If you’re not living life on the edge, you’re taking up space

It’s been a crazy few weeks. Crazy enough to get me back to this blog after I don’t even know how long. I’ve posted updates on Facebook over the years, but I know this one is going to be waaaaay too long for Facebook.  Go and grab a cuppa if you plan to read on.

An (attempted) brief summary of the past few years:

  • July 2015 to July 2017 – On Pembrolizumab (immunotherapy) clinical trial. Always had a few small spots lighting up on scans but deemed to be in remission.
  • December 2018 – scan showed relapse. Confirmed on biopsy of lymph near hilum of kidney. Not straightforward surgery and complicated by a wound collection necessitating readmission to hospital and return to theatre for drainage. Wound took about a month to close up. That’s how I roll.
  • March 2018 to September 2018 – Started back on Pembro. Scan at 3 months showed a great response (not remission) but scan at 6 months showed progression.
  • September 2018 to May 2019 – Much arguing with haematologist about plan going forward. He wanted me to have radiation. I didn’t want to have it. I ended up agreeing to do it but he agreed to attempt stem cell collection first, to have my stem cells in storage as a back up plan if radiation didn’t work and chemotherapy subsequently did; he was prepared to try a second autologous stem cell transplant. There was growing evidence that people respond better to chemotherapy after having immunotherapy. Part of the stem cell mobilization process involved giving me a single dose of chemotherapy. A drug called cyclophosphamide. That landed me in hospital with febrile neutropenia and the stem cell collection was a failure. My bone marrow had been too battered by past treatments and just could not produce the stem cells. I was devastated. I had been banging on about a second auto for four years, and now that chance was gone. I asked for another PET scan before starting radiation just to make sure my lymphoma hadn’t progressed and the radiation was still going to cover everything. That PET scan, on a Friday, with radiation due to start on Monday, to everyone’s complete shock, showed a complete metabolic response. No evidence of lymphoma. For the first time in FIVE YEARS. So radiation was cancelled and I then had nine cycles of a drug called liposomal doxorubicin. It was considered to be safe and effective in heavily pre-treated patients like me. It did cross my mind at the time that maybe I should have had still had the radiation and cousin Sonya also asked a very sensible question, which she is very proud of; why wasn’t I continuing on with the same drug that got me into remission? There wasn’t really a good answer for that but I think it came down to there not being any evidence for it but there was some evidence for the liposomal doxorubicin. People didn’t understand why I was still having treatment if I didn’t have lymphoma anymore. I got screamed at for “beating cancer but pretending everything was still bad”. Of course I was elated to be in remission, but there were no huge celebrations. I understood perfectly well what was going on, and I was still having chemo, FFS! One clear scan in five years does not mean a cure. There was almost certainly some lymphoma still floating around, just not enough to show up on a scan. The hope was that the liposomal doxorubicin would mop up anything left. Two further scans in January and March 2019 showed that I was still in remission. Wow! I was referred to another haematologist to discuss a donor stem cell transplant, something I had zero interest in. I still didn’t have a match anywhere in the world so all of my siblings were re-tested to see if they were half matches. A half matched transplant (called a haplo) is possible but of course is riskier than a fully matched transplant. The haematologist thought I should do the transplant, but wanted to see that I was in a deep remission first so suggested that I stop chemo and if the next scan showed remission, then I should do the transplant. It’s a massive undertaking and even if it’s successful in curing the lymphoma, you live with effects such as graft versus host disease for the rest of your life, and this can be debilitating and ultimately fatal. I was not interested. I figured that the fact that I was in remission from one dose of cyclophosphamide, a drug that wasn’t even given to treat my lymphoma, was so god damn ridiculous, it was only a tiny bit more ridiculous to think I might be cured. Haematologists didn’t disagree with me.

I posted this analogy on Facebook to try to explain the decision I was faced with.

I saw another haematologist on Friday, at the request of #besthaematologistever, to get an opinion on the donor stem cell transplant I don’t want to have. In a nutshell, he thinks I should do it (no surprise) but not right now (big surprise!) He says I should stop chemo and see what happens. If I relapse quickly off treatment, the transplant is off the table because it simply won’t work. If I’m still in remission in around three months, he thinks I need to do it then. If I don’t, I might relapse later and never be able to get into remission again and I will have missed the window of opportunity. But I might never relapse and not actually need it! The expectation is that I will relapse, hence the advice to do the transplant. It’s no walk in the park. One in eight people die from complications within the first twelve months. It’s certainly not a smooth ride for those who make it through either and the chance of being cured is about 50%.

I’ll explain the decision I have to make using Geoffrey Nyssen’s skydiving analogy (with a few tweaks).

Imagine you’re on a plane, and you’ve been on this plane quite a few times before. It’s a shit plane. Every time you go on it, you get injured one way or another, so you’re that little bit weaker every time you get on. This time, you get on with 7 friends and you’ve all got parachutes with you. The pilot tells you the plane is heading towards a mountain and he thinks he’s going to crash, but he’s not sure. The plane might crash or it might miss the mountain and land safely and you’ll be absolutely fine. So you could jump, but the catch is that one of the parachutes doesn’t work! Someone is going to die. Even if you get a parachute that does work, they’re a bit dodgy and you’re still going to be injured. And there’s only a 50% chance that you’ll never have to get on the plane again and there may not be any parachutes next time. Would you stay on the plane or would you jump?

So tomorrow is my “last” chemo. For about the fifth time. Next week I am getting on a plane, but not that plane. There won’t be any parachutes. There won’t be any mountains to crash into (I hope). The plane will take me to Bali because I believe there is no better place to put your head in the sand.

In other news, all three siblings are half matches and therefore potential donors. It’s game on to see who is the winner for the transplant we don’t want. And I got called a bitch on the tram on the way to the appointment. 🤷‍♀️

P.S. There are two correct answers to the question above. Bali and pink champagne.

Bali was awesome, by the way. What was supposed to be a 7 night girls trip turned into 11 nights thanks to not one, but two cancelled flights.

So that brings us up to the present. My last chemo was on 7th May and my haematologist wanted to wait two months before scanning. That was around the time I’d be heading off to Bali, yet again, but with the kids this time. 9th July was scan day. In the week before the scan, I ran over my son’s bike in the garage, that he’d pretty much left under the passenger side wheel ($250 to fix that) and my 17 year old dog had 28 teeth removed ($1000 for that) and survived!

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My little, old dog recovering from his procedure. Such a trooper!

The notion that bad things happen in threes didn’t occur to me at the time. I’d been feeling good, going to gym,  working, running around after kids. I had no reason to suspect I might have relapsed, other than the knowledge that cancer is a sneaky Mofo and you take nothing for granted. So when fave cousin and fave sis asked me how I was feeling about the scan, I said “my gut says clear, my head says not clear”. In hindsight, it was probably actually the other way around. It was my head saying “you have no reason to suspect relapse” and my gut saying “don’t be so sure”.

So the consultation to get the results of the scan done that morning went something like this:

Doc: How are you?

Me: Good. How are you?

Doc: Not good.

Me: Oh. Why?

Doc: Your scan.

He then proceeded to read out the summary of the report which said multiple retroperitoneal lymph nodes (that’s in my abdomen) and one hilar lymph node (that’s in my chest). Deauville score 5 (that’s the highest score you can get and pretty much means “this is cancer!”).

I wasn’t gobsmacked by this news, annoyed and deflated,  yes, but gobsmacked, no. The old gut was right again. He talked about possible treatment options,  but because I’m impatient and insist on getting my scan results the same day, he hadn’t had time to think about it or discuss it with colleagues. He then asked me to look at the computer screen, at results of my blood tests. My haemoglobin was low (anaemia), my albumin was low (that’s a protein in your blood and it’s kind of a marker of just not being well if it’s low) and the anaemia was macrocytic. I won’t bore you with the details of what that means, but it’s basically a description of the type of anaemia and leads to a long list of possible causes. I brushed it off and said “I’ve been macrocytic forever”. He showed me that I had been macrocytic, then I was normocytic for a while and then I became macrocytic again. He said the picture raised a suspicion of myelodysplasia but it could just be my bone marrow recovering from chemo. He said he needed to rule out myelodysplasia as that would impact my treatment options. I knew exactly what that meant. A bloody bone marrow biopsy. Myelodysplasia is hard to explain. I think in the simplest terms, it means your bone marrow isn’t working very well. Down the track, it turns into acute leukaemia. Nobody wants myelodysplasia, least of all someone with stubborn lymphoma. It is a well recognised complication of a crap load of chemotherapy, and a crap load of chemotherapy I have had. It’s pretty bloody rare but it happens. My haematologist just shook his head and said “you don’t want myelodysplasia”. That much, I knew. He told me I looked good and asked if I’d lost weight. I said I had – immediate look of concern and raised eyebrows – but that it was absolutely, definitely intentional. Loss of weight, fevers and drenching night sweats are B symptoms in someone with lymphoma and indicate that your disease is behaving more aggressively. I’ve never had them, but that doesn’t mean I won’t ever get them, so anything that might be a B symptom is always met with concern.

So the bone marrow biopsy. I was leaving for Bali in two days and I needed to have it done before I went as there were certain tests that would take a few weeks for results to come back. He didn’t want any further delays once I retuned from Bali. So he picked up his phone and tried to arrange one for the next day. I’d have to be admitted as an inpatient to have it done. Ridiculous! He asked if anyone could be bumped from tomorrow’s outpatient list and then asked me to wait in the waiting room and he’d get back to me.  He said to the person on the other end of the phone that it was a pretty soft indication (meaning he didn’t really think I had myelodysplasia but he was being thorough). That was comforting. I knew there and then, that all roads were leading to the donor stem cell transplant. I could not see any way of avoiding it now, as long as I could get back into remission, which of course was going to take some work. This was just SHIT!

I went to the waiting room and about five minutes later, he called out to me, with his mobile in his hand. The conversation went like this:

Doc: Can you come in on Thursday for the bone marrow biopsy?

Me: I’m going to Bali on Thursday!

Doc: What time?

Me: Flight leaves at 5:45 pm. 

Doc: Well, you can have it first thing in the morning. If you have it without sedation, you can leave earlier.

Me: Ohhhhhh no. I’m not doing it without sedation (memories of my first bone marrow biopsy done by a nervous registrar who needed three attempts to get a successful biopsy come flooding back).

Doc: Look. I’m doing everything I can here. You’re going to have to compromise! You sort it out!

And with that, he shoves his mobile in my hand and returns to the patient in his office who he has left to come out and talk to me. I actually had a little chuckle. Our relationship is such that he can talk to me like that. Had an earlier haematologist spoken to me like that, I probably would have punched him in the throat.

So I chatted to the registrar and we agreed that I would have the biopsy on Thursday morning and we’d decide on the day if I was going to do it with sedation (I’d have to wait around for two hours afterwards) or without sedation (I could leave after an hour). The hospital is about an hour from home and half an hour from the airport. If I had sedation I’d probably have to take the kids with me, which would mean getting them up at 6 am, dragging them into hospital, then going to the airport, flying to Bali on a flight arriving at about midnight Melbourne time, and then getting to our hotel at around 2 am. No. Thank. You. I was going to have to do it without sedation.

Fave sis picked me up at stupid o’clock and off we went for bone marrow biopsy number 4. As it turns out, it wasn’t an all or nothing thing. There was the option of sedation or “the green whistle” (penthrox). I’d never had the green whistle before and the registrar assured me that some people prefer it to sedation as it really sends them off with the fairies. Whilst I do love a bit of sedation, I went for the green whistle and it was fine. It really comes down to a competent and confident registrar doing the biopsy and thankfully I scored one of those. I was wheeled out of the procedure room at 9:40 am, was putting my shoes on at 10:35 am and at 10:40 am, I was out of there! We raced home, threw the last few things into the suitcase, apologised to my lovely friend, Kate, who was looking after the house and the old dog, that I didn’t have time to change the sheets on the bed, quickly showed her where a few things were and charged out the door to get on the bus to the airport. We made it! Exhale.

It had been such a whirlwind since getting the news of the relapse, with packing for Bali and a bone marrow biopsy thrown in for good measure, that I hadn’t really had time to think about it too much. Once I sat down on the bus, I had time. But I had to keep my shit together because I was in a public space with my kids! Some of the thoughts that went through my mind were ‘Well, this is it. I’m gonna die. Better make this a good last holiday with the kids. We’ll do everything and no expense will be spared. Geez, I hope I don’t have myelodysplasia. That would be really, really shit! Of all the things you could possibly think of when you think you’re going to die, these are the two random things that dominated my thoughts:

  1. Who is going to braid my daughter’s hair for cheer comps?
  2. The thought of a Vale in the Royal College of Pathologists monthly newsletter.

Rrrrrrrrrandom!!

With regard to number 1, look, I’m a pretty mean braider, if I do say so myself, but seriously??? I think there will be bigger issues than who is going to braid my daughter’s hair. Anyway, fave sis, that will be your job. And number 2? I got nothin’.

So anyway, we eventually arrived in Bali and got whisked off to our resort where we were very pleased to be informed that we had been given a complimentary upgrade to a private villa with our own personal butler. Whaaaaaaat? Well after the day I’d had, I felt like I deserved it!

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Off we go, to our private villa.

 

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Private pool in private villa. Nice!

As soon as we walked into the villa, I started searching for the remote to turn the air conditioner off and I said, “Geez, it’s freezing in here”. My daughter looked at me like I was insane, a look I am quite used to, and said, “ummm, no, it’s not!” Oh crap! I knew straight away that I wasn’t shivering because it was cold, I had a fever. I rummaged through my suitcase to find a thermometer and sure enough my temperature was over 38. Most people wouldn’t have even checked their temperature, but with my history, a fever can be a big deal. It was late, so I took some panadol and went to sleep. I’d worry about that fever in the morning.

I woke up with a bit of a wet singlet. I’d been a bit sweaty overnight but it wasn’t a drenching sweat. Nevertheless, alarm bells started ringing. Was my lymphoma suddenly running rampant and I was having B symptoms, for the first time in six years, which just happened to start the moment I arrived in Bali? I’d lost weight intentionally before coming to Bali but it had come off pretty easily so maybe it was actually the lymphoma and not what I was (or wasn’t putting in my mouth). I also had been getting a bit sweaty at night for a while but it was so cold in Melbourne that I had an electric blanket and I’d been falling asleep with it on. That’s a good enough explanation. Isn’t it?  Shit! Stay calm, Melissa. It could just be a simple virus. I started to get the sniffles and a bit of a cough over the course of the day, so I was leaning towards a virus. I’d be fine. My temperature stayed down for most of the day but by around 4 pm, I started getting the shivers again, felt like crap, and up it went. I mustered up the energy to head out with the kids for dinner and to watch the football, but I felt really ordinary. I took some panadol and once that kicked in and my temperature came down, I felt better. We had some dinner, watched Collingwood beat the Eagles by a point, and went back to our villa to bed.

Again, I woke up sweaty. B symptoms? Myelodysplasia that had already transformed into acute leukemia? Why was this happening in Bali?? I might have to abandon the holiday and go home! Do I just jump on a plane to Darwin and get checked out and then come back? Or do I go back to Melbourne?  Do I take the kids with me? Or do I ask their father if he can come over and finish the holiday with them? All of these thoughts were running through my mind. I even considered writing one of those “if you find this letter, I’m dead” letters with all my passwords and things  my family would need to know if I died. How bloody ridiculous is that? It was probably because I was reading a book at the time that started like that. Anyway, the voice of reason stepped in soon enough and it occurred to me that this is the difference between people who have anxiety and those who don’t. People with anxiety don’t have  voice of reason. By this stage I had developed a bit of a productive cough so I probably just had a chest infection. I’d get some antibiotics and everything would be fine.

We moved hotels that day, which was Saturday. We stopped at a pharmacy on the way; fortunately you don’t need prescriptions in Bali and fortunately I had a clue about what the best antibiotic would be to cover a chest infection. I was sorted. By the time we arrived at our home for the next two weeks, I had the shivers again and the first thing I did when I got to the room was to find my cardigan. I was freezing! In Bali! Ridiculous! I felt so crap that night that the kids had burger rings for dinner. I couldn’t even be bothered getting room service. Mother of the year!

It was around this time that it crossed my mind that I possibly had an infection called Pneumocystis jirovecii pnemonia (PJP). This is a nasty little fungus that only affects really immunocompromised people, like HIV positive people, or people on chemo. I’d had it twice before. The first time was in 2014 and I was in hospital for a month. It was touch and go there for a while. I was delirious for most of the admission. I had chest surgery with tubes hanging out of my chest afterwards, fluid drained from around my lung, fluid drained from around my heart and spent a night in ICU. My family got the “we don’t think she’s going to make it” talk, which I had absolutely  no idea about at the time. I really didn’t know how sick I was until a few months later when my family filled me in and my haematologist (the one who was trying to kill me, not the current one) said, “you nearly died!” I never got around to blogging about that experience. I probably wouldn’t have had much to say since I was so off with the fairies. Ha! Who am I kidding? I would have found a few thousand word. Fave sis even started writing a celebrity guest blog post. She should probably finish that and post it one day. The second time I had PJP, I was nowhere near as sick. I stayed out of hospital and it cleared up with a course of Bactrim (bloody huge tablets that are hard to swallow). While I was having my most recent course of chemotherapy, I was taking prophylactic Bactrim – that means taking a low dose to prevent getting Pneumocystis or other opportunistic infections, rather than taking a high dose to treat it. I had stopped taking it about a month ago as I had a blood test that showed the level of a certain type of white cell was high enough so I shouldn’t be at risk of getting it. So therefore I shouldn’t have it, but the symptoms I was experiencing were eerily similar to the first time I had it.

I felt like I was getting better on the Bali antibiotics but I decided I needed some Bactrim in case they didn’t do the trick and I really did have pneumocystis. I casually messaged Kate, who was staying at my house, and told her where she could find my stash of Bactrim, and messaged nurse Lozza, who was coming to Bali on Monday, to ask if she could pick them up, and a few other things I’d forgotten, and bring them over. I didn’t mention anything about what was going on to anyone in my family as I knew they would completely freak out and insist I come home.

I had exchanged  a few emails with my haematologist (I’ll just refer to him as #bhe -best haematologist ever from now on, it’s easier to type) as he was keeping me in the loop with his communications with overseas experts regarding what the best treatment plan for me would be. In an email on Monday, I mentioned that I’d been having fevers but that I’d started on antibiotics and I felt like I was getting better. In one of his emails on the Tuesday, he asked what I thought about going back on the immunotherapy drug I’d been on previously, in combination with the chemotherapy drug that had got me into remission last year after a single dose (cyclophosphamide) and attached a few papers suggesting there was synergism when the drugs were given together. I said I guess that made sense since it got me into remission when nothing else had but was he sure my bone marrow could handle the cyclophosphamide? He said yes, at low doses and also gave me the wonderful news that my bone marrow biopsy was looking good. There were still a few tests to be done but there was a low index of suspicion for myelodysplasia. “Thank fuck for that”, is what I said in my head but “thank goodness for that”, is what I wrote back. That was a huge load off my shoulders. Even though the results were only preliminary, I was VERY relieved. I shared the good news with a few people back home but still didn’t mention my fevers. Also, fave cuz felt EXTREMELY intelligent for asking that question months ago about why I didn’t continue on the cyclophosphamide after it had gotten me into remission. Savour the moment, cuz.

So by now, nurse Lozza had arrived in Bali with my drugs and we’d made vague plans to catch up that day. We were staying at different hotels, about half an hour apart. By this stage, I knew the Bali antibiotics weren’t working and I really needed that Bactrim! Did I go and get them that day? Nope! I couldn’t be bothered. Instead, I booked a quad bike tour for the next day, because that’s what you do when you feel like crap. I’d promised the kids we’d do it so I needed to get it out of the way in case I had to end the holiday early and go home. The fevers continued and I woke up the next morning with a really, really wet singlet, you know, like a drenching kind of night sweat. But my temperature had been up to 39 and I was in Bali without an air conditioner on so I had a reasonable explanation for it, didn’t I?

We did the quad bike tour the next morning, and it was heaps of fun! Riding through rice fields and caves. We had a ball. I slept pretty much all the way there and all the way back with the shivers setting in on the trip back. I took some panadol and asked the driver to drop us at Nurse Lozza’s hotel rather than ours, so I could get that Bactrim into me.

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The daughter riding an ATV for the second time in her life (living on the edge!)

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Through caves.

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That’s just me, on an ATV, with a temp of 38.3*~            *possibly not my actual temperature                                   ~never let the truth get in the way of a good story/rhyme

I was feeling very, very average by the time we arrived at Nurse Lozza’s hotel and I knew then that if the Bactrim didn’t turn things around, I’d be heading home. I mused with Lozza how ridiculous it was that I would be seeking medical attention if I was at home and would possibly be admitted to hospital, but here I was, in Bali, just casually waiting for antibiotics to come from Australia with fevers that had been going on for a week now. Back in the 90’s, a motto that my friend, Jacki, and I lived by, was “if you’re not living life on the edge, you’re taking up space”. I think it was a couple of crazy Irish lads (yes, they were the crazy ones, not us) who introduced us to it. I really felt like I was living up to that motto right about then, even though I was supposedly a much more mature woman.

I got the Bactrim in as quickly as I could, and a few hours later, I commented to Nurse Lozza that I thought I was already starting to feel better. It seemed it bit crazy that it would make a difference so quickly but I really didn’t feel like I was imagining it. No fevers and no nightsweats that night. I figured I might be cured! I emailed #bhe and asked him if he had a problem with me taking two Bactrim a day while I was in Bali (I think the actual dose for treatment of PJP is four a day but I only had 19 tablets so I needed to stretch it out). I told him I’d still been having fevers after I told him I thought I was getting better on the Bali antibiotics and that I’d had a drenching night sweat the night before. The response was swift and matter of fact, with every man and his dog copied in. “It will be your Hodgkin”. He then asked when I was returning and told the other recipients of the email that I needed to start treatment promptly upon my return so could this please be organised. He then sent an email just to me saying “are you sure you don’t want to return earlier given your symptoms???” This is just a very experienced professor of haematology who I happen to think is the best in Australia, but did I take his advice? Nope. My response was something along the lines of “I’ll give it a few more days. I’ve got definite infective symptoms and I feel like the Bactrim is working. This might be the last holiday I go on for a while. Don’t worry, I won’t be a hero/moron if I go downhill”. I’m sure there was a big shake of a professorial head back in Australia.

The next day, my temperature got to a high of 37.9. I was so excited that I didn’t crack 38. I got better each day and eventually stopped checking my temperature as I knew it was OK. There were no more night sweats. I gave it a few days and then politely let #bhe know that I was right and he was wrong. I wasn’t having B symptoms. Nurse Lozza joined me at my resort for the last week and we went on a few adventures, but mostly relaxed, had massages and really didn’t do much. One of our adventures was a lazy 23 km bike ride. We posted that on Facebook but just left out the bit about it being all down hill except for a few small hills which actually nearly killed me. I was huffing and puffing after them, I can tell you. I also noticed that I was getting a bit short of breath after walking up only one flight of stairs at the resort but I didn’t think too much of it.  My haemoglobin had probably dropped a bit more but I wasn’t acutely unwell. It’s actually easy to not realise you are sick in Bali because you really don’t have to do much other than walk down to the pool and relax on a pool lounge while your room is cleaned and food and drinks are brought to you.

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Nurse Lozza and I, on our mammoth 23 km bike ride.

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The crew. Two mums, five kids.

Since I was feeling better and I knew I was going to be OK, I decided I could let fave sis and fave cuz in on the excitement of the first week in Bali. They were not impressed, which is exactly why I didn’t say anything to them while it was happening. They told me I  was absolutely insane and my behaviour was dangerous. Probably true. They asked what would have happened if Nurse Lozza didn’t bring the Bactrim over. Well, worst case scenario is that I would have got sicker and died but I’m pretty sure I would have bailed and got back to Australia before that happened. They decided Nurse Lozza saved my life and she was happy to accept that glory.

I won’t bore you with any more Bali photos. Soon enough, the holiday came to an end but I was actually ready to go home, despite what I knew was awaiting me. A holiday on the back of school holidays with siblings who are fighters is not the best idea I’ve ever had. We had an overnight flight home on Saturday night and fortunately had the common sense to arrange a transport service to drive us home. No Skybus for this tired lot. I was naturally exhausted when I got home. I had a sleep while the kids stayed awake watching Netflix all day. They did go to sleep very early on Sunday night though.

I arrived home to my ducted not working and a flat car battery. Both were relatively easily fixed, fortunately. Again, that notion of bad things happening in threes didn’t cross my mind.

On Monday morning, I woke up and put my activewear on as I was planning to go to the gym. I dropped the kids at school and as time went on, I thought “I am kidding myself”. I felt like the warm up would be enough to make me vomit. I checked my heart rate and it was 112. I figured I really must be a bit more anaemic. I texted my awesome trainer, Emma, and apologised that I wouldn’t be coming to class. Last minute cancellers are the worst! She was, of course, very understanding. I saw my GP later that day and had some blood tests in preparation for an appointment with #bhe the following day. On Tuesday morning, before I got out of bed, I thought I might make it to gym that day. But once I got out of bed, it was apparent that wasn’t going to happen. I dropped the kids at school and went back to bed and slept for two hours. That is so not me!

That afternoon, I had an appointment with #bhe and a radiation oncologist. #bhe had worded me up in Bali that it was time to consider radiation. He wasn’t getting any arguments from me this time. I knew I didn’t have a choice and I was pretty sure I didn’t have a choice about the donor stem cell transplant, although I had a tiny glimmer of hope because in all of his emails to overseas experts, he was still saying I wasn’t keen on it. There wasn’t actually a clinic running that afternoon, like there is every Tuesday afternoon, for some unknown reason, but they’d pulled a few strings and arranged “special” appointments for me. I arrived and was first met by the lymphoma nurse. I told her I’d been feeling really tired and asked her what my haemoglobin was.  She checked and told me it was 89. That’s pretty low and I wasn’t surprised. No alarm bells were ringing. The transplant nurse then appeared and said, “let’s go”. The lymphoma nurse stood up to come with me and I said ‘Oh, are we all going?” thinking this was a bit of special treatment but I figured that since there was no official clinic on, they obviously weren’t busy and could both sit in on my appointment. Still no alarm bells. Hey, I was tired.

So I walked into the consulting room and sat on a chair that had been pushed several metres away from #bhe and he said “don’t come near me, I’m sick”. (Dude, you’re sick???). You’ve probably heard those stories where people say they haven’t heard anything in a consultation and it’s all been a blur. That’s never happened to me before, but it bloody well happened that day. I have no idea what #bhe said but the words that came out of my mouth, with a tone of absolute disbelief, were “I have myelodysplasia??” “Yes”, was the answer. Then it was something along the lines of it didn’t look like it under the microscope but it was confirmed on genetic testing. What. The. Fuck? I don’t know what came out of my mouth after that but it was something inappropriately polite.

In that moment, I felt like I had been walking along a path, minding my own business and someone came up behind me and smashed me over the head with a baseball bat. I was not expecting that, at all. There was then some discussion about treatment. I’d be having immunotherapy and radiation, the treatment that had been planned for me last year. Cyclophosphamide was off the table because you can’t give someone with myelodysplasia chemotherapy. I asked if he was sure he didn’t want to give me just a tiny bit. He was sure. The hope was that I would be in remission after radiation and immunotherapy and I would then go straight on to a donor stem cell transplant. He said if I didn’t have lymphoma, and just had myelodysplasia, he would be sending me to transplant. I don’t actually know a whole lot about myelodysplasia, but that much I knew. The transplant was now 100% unavoidable but I had to get the lymphoma into remission first.

#bhe sat back and asked if I had any questions. There was a stunned silence. I always have a million questions and I did have a million questions about treatment of my lymphoma in the absence of myelodysplasia. But since the baseball bat incident, I had nothing. My stunned silence was met with stunnedness (not a word, I know but it describes the situation) from #bhe. He couldn’t quite believe I wasn’t firing a million questions at him. As much as I know it’s gold standard practice to deliver bad news face to face, I really wished he’d let me know about this last week so I could gather my thoughts and come up with questions. I do have a million questions now, none of which I really want to know that answers too. I told him he’d I’d been tired and that I get symptomatic with anaemia and he said he wasn’t surprised because my haemoglobin had dropped quite quickly. He said they don’t usually give blood transfusions unless your haemaglobin is below 80

#bhe often says to me, “You’re a strong woman. You just take everything in your stride” I certainly wasn’t taking this news in my stride, so instead he said “do we need to offer you  some extra support given that we’ve just given you some pretty bad news?” Again, stunned since. The Lymphoma Nurse piped up and said “I’ll take her out and look after her”. #bhe then said “I’ll dictate  a letter to your GP. You don’t need to stay here and listen to this.” He usually dictates letters in front of me and sends me a copy. Somehow I don’t think I’ll be getting  copy of this one.

So I walked out and the tears flowed. I seriously could not believe it. I know shit happens but all I could think was “what the fuck have I done to deserve this?” “Why am I always on the shit end of the percentages?” Most people with HL are cured with first line treatment. If not, then most are cured with an autologous stem cell transplant. The risk of developing myelodysplasia after chemotherapy, even a lot of chemotherapy, is pretty bloody low. But here I was.

#LESSDRAMAMOREKARMA (PLEASE)

The Lymphoma Nurse and I chatted for a while about how utterly fucked up it was and how everyone had been pretty shocked and devastated when the news came through last week. She said they had discussed me in a meeting that morning, about how to proceed and that most people thought I would refuse the donor stem cell transplant because I have always been so against it. Apparently #bhe said “no, she’ll do it.” And of course he is right. I have absolutely no choice in the matter now, but there’s just that small issue of getting the lymphoma into remission first. No remission = no transplant. Given that I’ve had one remission in five years and I relapsed within two months of stopping treatment, another remission is by no means a given.

The radiation oncologist came in and complimented me on my hair. He said short hair suits me and asked when I’d cut it off. It fell out! This is growing back. Oh. Awkward. He went through his plan, potential side effects etc. I didn’t really need to listen as I’d heard it all before and it really didn’t matter. I had no choice. When I was going to have radiation last year, the planning was complicated as I’d lost some weight and didn’t have much fat around my organs. I’d lost more weight since then so it was going to complicate things a bit more. Of course. He said it would take two to three weeks to plan the radiation and it would go for four weeks, every day (Monday to Friday). He said he was confident I would be in remission after it. #bhe ever had said I should wait for the radiation to start and start immunotherapy at the same time. When I heard that wasn’t going to be for two to three weeks, I asked the Lymphoma Nurse if she go back to #bhe ever and ask if I could start the immunotherapy ASAP. I didn’t see the point in waiting. The radiation oncologist agreed that it wasn’t necessary to wait.

The Lymphoma Nurse and I chatted a bit more after he left and then I went off to have some more blood tests (including iron studies and it turns out my iron stores are really low too). So many reasons to be tired. I pulled myself together and headed home. I had to put on a brave face in front of the kids. I hadn’t even told them about the relapse and now I had quite a bit more I needed to tell them.

I saved that for Wednesday night. I just launched right into it. No way to sugar coat this! I said “You know how I had lymphoma?” Twelve year old daughter just rolls her eyes. “Well, it’s back”. Twelve year old daughter glares at me and says, “It never went away!” Wow. She gets something most adults struggle with. I told them I also now had another problem with my bone marrow that meant it wasn’t making enough blood and that made me very tired. I told them I had a lot of treatment coming up which meant I’d have to go to hospital every day for a while but that I’d try to make sure it was within school hours so I could still drop them off and pick them up. I told them that if this treatment worked and got rid of the lymphoma, I then had to do something else and that would mean I’d be in hospital for about a month. Not happy! I then had to talk about dying. Some may argue that was unnecessary but I felt like they needed to know. I told them everyone dies one day and there was a small chance I’d die soon but that I’d do my best not to and I had very clever doctors looking after me who would also do their best to make sure I didn’t die. Wide eyed glare from seven year old son. Tears and anger from seven year old daughter. Son then went back to watching Netflix and daughter asked a few pretty intelligent questions about the transplant. She asked why I didn’t have this transplant in the beginning and I said because it’s dangerous so I had to try everything else first and unfortunately nothing else has worked. She then said, “it’s just going to come back again”. Pessimistic or realistic? I’ll let you decide. I have a cancer that just has not gone away or has kept coming back for the past six years so you can’t really blame her for saying that. I then emailed the teachers to let them know about the bombshell I’d just dropped on the kids, so that they could keep an eye on them at school.

I softened the blow a bit by telling my daughter that I’d dry to take her to Paris (and my son somewhere of his choice) in the time between radiation finishing and the stem cell transplant. According to my calculations, that should conveniently fall in the school holidays. I had promised my daughter I would take her to Paris one day, so I figure I need to do it now as a bit of an insurance policy. I hope it can happen.

I’ve spent the past few days feeling really, really exhausted. My heart rate shoots up when I take a few steps and I just want to sleep. I was really hoping to get a blood transfusion this week but that would have involved spending a whole day in hospital to be reviewed, wait for a cross match, wait for the transfusion etc etc, and as stupid as it sounds, I was too bloody tired for that so I stayed home. I have to go in next week for radiation planning and to have immunotherapy so I’m hoping a blood transfusion can be arranged on one of those days and I hope it will give me a new lease on life.

I really cannot believe how quickly things have changed. I’ve gone from feeling normal, going to gym, working, and hoping to hear news that I was still in remission, and daring to believe I might be cured, to finding out that I have not one, but two cancers, feeling like crap and facing the fact that I’ll be having a very risky donor stem cell transplant within a few months (if all goes to plan!). My weight is now dropping quite quickly (nearly 2 kg in three days), I think partly because I don’t have much of an appetite and partly because there is so much inflammatory activity going on in my body that my metabolic rate is through the roof. Lymphoma does that. This is the first time that having cancer has actually made me sick. Previously it’s only been the treatment that has made me sick. I really don’t need to be losing weight heading into a transplant, so I had Macca’s for dinner tonight, but I probably should really see a dietician and take a more sensible approach.

I’ve given death a lot of thought over the past few days and all I can say is I’m not ready for it and I’m not interested in it. But I also know that no matter how strong the mind is, sometimes the body just can’t keep going. And my body is battered.

I’ll pick myself up and I’ll face this next challenge with a mixture of humour, anger, frustration, fear and swearing. I’ll have the support of family and friends and I’m going to need it. Again.

I was planning to wrap this post up with something witty but I’m too bloody tired and it’s way too bloody long. I do have this to say…………To the people who have kept in touch and continued to check in to see how things are going, no matter how infrequently, or even just thought about me, thank you. To the people who have rolled their eyes when I’ve posted or talked about cancer, and thought I was milking it, because I was in remission after all, and I looked so well, fuck you!! There’s that anger I was talking about.

And of course, I can’t do a post without giving a bit of advice……

  • Do not say it’s good that the decision about whether to do the transplant has been taken out of my hands, so I don’t have to agonise over it. That’s like saying I have the good cancer. Do not go there.
  • Do not tell me to stay positive. That hasn’t got me anywhere so far. And don’t say “you got this”. I just can’t stand that phrase.
  • If I die, do not even think about saying I lost the battle or I fought hard. Just don’t.

There should be more advice but I’ve cracked 8000 words and I need to go to sleep. I’ll save that for another post. And I apologise in advance for all the mistakes. I can’t be  bothered proof reading. Go to town, fave sis. Good night.

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That’s me, living right on the edge, not taking up any space.

 

 

 

 

Yes, I’m still alive

It’s been a really long time between blog posts. I’m over two years behind now. Some days I think I’ll get back into it and catch up, other days I think I can’t be bothered because I’m a bit bored with this cancer gig. I still don’t know if I’ll ever catch up but I thought I’d post a little update now, and there are a few reasons for that. One is that a few months ago, I randomly contacted an old friend of mine who I hadn’t spoken to for ages. He replied saying that he’d been checking my blog regularly and hadn’t seen any new posts so he thought the worst. So this post is basically a quick (my sort of quick) update for the people who aren’t on Facebook, like Sally and Ev, because I posted this on Facebook two days ago, on the anniversary of my admission to hospital for a stem cell transplant. It’s also for people like my friend, who’ve been checking in and wondering what’s happened to me, to let them know that I’m still alive!

I almost didn’t remember how to log in to this blog again, but when I did, I was reminded that I have a lot of blog posts that I’ve written a few points for, so I really should get back to them one day. Jenni (fave sis) also has a celebrity blog post that she started writing over two years ago, so I should give her her five minutes of fame. I also checked the stats page, expecting it to be blank, but even after writing nothing for over a year, this blog is still getting a few hits every day.

Below is a summary of the past two years, but there’s still a bit of information missing between the last blog post and the day I was admitted to hospital for the stem cell transplant. I will try to fill all that in one day….maybe.  When I talk about The Lymphoma Nurse Project below, if you haven’t heard about it, it’s just a little goal I’ve set myself to raise $100,000 this year to fund a full-time lymphoma nurse, based in Melbourne, in 2017. This is part of a bigger plan of Lymphoma Australia’s to have lymphoma nurses in every state in Australia. I am taking up the Melbourne challenge.

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Two years ago today, I arrived at hospital for a stem cell transplant. I was already weak and a shadow of my former self after nearly a year of chemotherapy and an infection that nearly killed me. I knew the stem cell transplant wasn’t going to work but I had been convinced it was my best option at the time.

I was in hospital for nearly a month. I missed my daughter’s birthday and my sister’s birthday (well, that one came to me) while I was given what is described as a lethal dose of chemotherapy – chemotherapy so strong that it would have killed me if I wasn’t “rescued” by getting my stem cells back. That in itself was horrendous enough, but it was made worse by sharing a bathroom with a man who urinated all over the toilet seat, (Every. Single. Time.) and left his clothes in the bathroom when he’d lost control of his bowels. I had food stolen from the fridge (not that I ate much), body wash stolen from the bathroom, a grad nurse whose idea of sterile technique was far from ideal (when I had a white cell count of zero). Horrendous doesn’t really cut it. When I finally got out of hospital, on the days I had the strength to shower, I would throw up because my heart rate would soar to about 160. It was brutal.

It was no surprise to me when I got the news that the stem cell transplant had failed. I had lymphoma in my neck, chest, lungs, bones. Everywhere. It was a massive FU from that cancer. What I didn’t tell people at the time was that according to published studies, people who relapsed within 60 days of a stem cell transplant lived on average for another 1.2 years. So according to the data, I should be well and truly dead by now. But according to the data, I also should have been cured by the first 6 months of chemotherapy. So I’ve always thought, fuck the data.

I then had to raise a lot of money to get a new drug on the Hodgkin’s lymphoma scene and I was absolutely blown away by the support from friends, family and strangers. Nobody knows that there was someone in my family who was just sitting back, watching, and was ready to jump in with whatever I needed to finish the course of treatment when all of the generous donations ran out. It never got to that because soon enough, that treatment stopped working.

I always asked a lot of questions and never understood why Australian’s couldn’t access drugs that were freely available overseas. My haematologist at the time mentioned a trial for a drug I was constantly asking him about. I didn’t need it at the time, but I got in touch with the head of haematology at the hospital where I was told the trial would be running. Best decision of my life!

When the previous drug stopped working, I went to see this haematologist for a second opinion because I wasn’t happy with the advice from another haematologist (not the one who told me about the trial; I have a lot of haematologists in my life). He quickly became MY haematologist and I haven’t looked back. I had to wait 6 months for the trial to start, just letting my lymphoma spread from my neck and chest to being all over my body again. But after just 4 cycles of this new trial drug, a drug that isn’t chemotherapy, I was either in remission or very close to it. A year later, I’m still in that situation with regard to the lymphoma, I’m back at work, I can look after my kids, my mum has moved out, I am no longer the skinny sister and I’m on the board of Lymphoma Australia trying to make a difference for all lymphoma patients; trying to prevent others from going through some of what I’ve been through (there were a few bad decisions along the way but I won’t go into them now).

Thanks to my new haematologist and Lymphoma Australia, I have been able to pass on information about trials and compassionate access programs to other people with Hodgkin’s lymphoma. Information their haematologists have scoffed at and told them they were wrong. But I insisted and they insisted and they got on the new treatment – people who had been told to go home and die, a boy whose mother thought she was going to see him die before her eyes on the very day he started the new treatment, a friend in his 20’s who was offered palliative chemotherapy. The stories are truly amazing.

This, my friends, is why I am so passionate about fundraising for a lymphoma nurse (who won’t be a grad nurse). Someone who is 100% dedicated to lymphoma patients and their families and can help them navigate the system and access THE BEST treatments, not just what is available in their hospital. My goal starts in Melbourne, but we need a nurse in every state and we will get there.

A few boring stats for you – lymphoma is the fifth most common cancer in Australia. Someone is diagnosed with it every TWO hours and someone dies every SIX hours. It claims as many lives in Australia as skin cancer, yet a lot of people have never heard of it and would have no idea what the symptoms are. Do you know?

I honestly believe that I would not be where I am today if the mistakes in my treatment were not made. I could have been cured a long time ago. But mistakes were made and I could have died, but I didn’t. I was “lucky” to be able to find out about and access the best available treatment. Not everyone can do that themselves. If you believe everything happens for a reason, then I guess I wasn’t cured with first line treatment so my eyes could be opened to this whole other world. It’s shit and it’s unfair and it’s heartbreaking at times but it’s so bloody inspiring and exciting too.

Please support me and my Lymphoma Nurse Project. https://www.facebook.com/melbournelymphomanurse/… Simply like the page (if you’re on Facebook). Please share it too and ask your friends to like it.

If you’re feeling really pumped, commit to raising just $100 for this project. Join ‘Team Baker’ here https://lymphomanurses.everydayhero.com/au/team-melissa Set up your own fundraising page and spread the word! $100 is easy – if I can motivate just 500 people to do that, then I will be half way to my target. Lymphoma nurses really will make a difference.

And this my friends, is why I haven’t touched that blog (remember that?) for two years. This was supposed to be a short post saying this day two years ago was shit, but I’ve rambled a bit. As I do.

‪#‎fuckyoucancer‬ ‪#‎fuckthedata‬ ‪#‎chemosucks‬ ‪#‎immunotherapyisthenewblack‬‪ #‎lymphomanurseswillchangelives‬ ‪#‎getonboard‬

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My mum, myself and Jenni on admission day. I have no idea why we are all smiling.

52. ‘The Weekend’

Wow! This weekend will be a year behind. Time to get moving.

Friday 28th February to Sunday 2nd March, 2014

‘The Weekend’ refers to ‘The Weekend to End Women’s Cancers’ benefiting Peter Mac, a 60km walk over two days. If you remember back to the days when I was blogging a bit more regularly, you will recall that my friend Lisey and I co-captained a team called ‘The Good Tittie Team’ (so named to tie in with both of our blogs). I don’t really need to say a lot about this weekend, but I’m sure I will. The achievements of ‘The Good Tittie Team’ have been all over Facebook (albeit nearly 12 months ago), and Lisey has written a more succinct summary which you can read here if you want to skip my ramblings.

In the weeks leading up to ‘The Weekend’, (apart from being broken by ridiculously intense chemotherapy) we were busy working as a team. We were sharing money around to make sure every member had raised over $2000 as that was a requirement to be eligible to walk and would also mean we would achieve trailblazer status. I’ll be honest and say we were all getting a bit frustrated by the constant phone calls “encouraging” us to continue fundraising, and we were not at all impressed by the fact that each individual had to raise a minimum of $2000 instead of a team total equating to at least $2000 per team member. For example, I had raised over $5000 but if someone else in my team raised any less than $2000, they would be told they were not allowed to walk. This led to a few heated phone conversations with organisers, and to my immediate family in particular, being politely described as “passionate”.

Achieving trailblazer status meant our team name would be inscribed on a plaque and displayed at the Peter MacCallum Cancer Centre, and we were all a little bit amused by the prospect of the word “tittie” appearing on a plaque. It also meant that Lisey and I, as team captains, would be invited to a post walk recognition event. I was particularly keen on attending that as I had a bit of a bone to pick with the CEO of Peter Mac (unrelated to the walk), who I assumed would be at this event.

On the Friday, our team uniforms had to be picked up and we had a team dinner as most team members had chosen to stay in a hotel that night given the walk started very early in the morning. We had an awesome uniform supplier but he had a bit of an issue with the printer and had to find a new printer who would do the job free of charge. This led to very last minute printing on Friday afternoon. We had a fantastic logo for the front of the T-shirts, designed by Papa Russ, and on the back, we had the names of all the team members as well as logos for businesses and names of people who had generously donated $500 or more.  The layout and digital designing of all of this was painstakingly (painstaking because he had to deal with the indecisiveness of Jenni and myself) put together by Shane from Analog Creative, a good friend of mine and husband of one of the three Lisa’s in ‘The Good Tittie Team’.

Jenni, being the self-appointed uniform co-ordinator, was in charge of picking up the uniforms. Off she went in the early afternoon, for what she thought would be a quick trip to our supplier. The tops were there when she got there but there was a slight problem. The printers had taken it upon themselves to make an executive decision not to print the back of the tops because there were seams on them which they thought made the printing look imperfect. Yes, it did look slightly imperfect, but this was a fundraising walk, not the Olympic games (although you could be excused for thinking that’s how we were treating it). We wanted the names of the team members on those tops and we wanted to recognise our major sponsors. When Jenni told me about this issue, it took her quite a while to convince me she was telling the truth. I really thought she was pulling my leg.

So, Jenni and the supplier drove back to the printers to get the backs printed and of course that took a lot longer than anticipated. Jenni then took everything back to her house to sort out (two tops of correct size and a hat for each walker) and cousin Sonya delivered them to the restaurant we were all dining at, at approximately 10pm! We were all very impressed with the end result.

How good was our uniform?

How good was our uniform?

There had been much discussion and even a poll amongst the team, regarding what colour hats we should wear; black or purple. I can’t even remember what colour won the poll (possibly green) but I was firm in my opinion that they should be purple. And when you’re a captain of a team, with cancer, undergoing chemotherapy, not many people argue with you. As you will see from the photos below, purple was a good choice. In a sea of 1401 walkers, the purple hats stood out and it was easy to find fellow members of our team.

After a decent sleep, the day of the walk finally arrived. I woke up and got out of bed at stupid o’clock, which in itself was an achievement for me since I’d spent much of the past three weeks not really getting out of bed. I didn’t really have a plan regarding how much walking I was going to do, I just knew that I was going to cross the finish line with my team. I also knew I wasn’t going to be able to walk 30km each day, so a wheelchair had been hired so I could still rest if I needed to (and make someone push me!)

So in the early hours (it was still dark) of Saturday 1st March, all of the members of ‘The Good Tittie Team’ (and a couple of thousand other people) converged on the park where the walk was to begin. Surprisingly we all found each other. There was a buzz of excitement. Those who hadn’t been at dinner the night before were given their uniforms, trailblazer ribbons were attached, we ate breakfast and before we knew it, the opening ceremony was underway.

Lisey and I had been invited to be part of a survivors circle in the opening and closing ceremonies. This involved six cancer survivors holding hands to form a circle, and walking up on to the stage. There was a rehearsal on the Friday afternoon which I couldn’t attend but the organisers had said that Lisey could tell me what to do and I could decide on the day if I wanted to be involved. Everything happened so quickly that morning that I completely forgot about the survivors circle so I didn’t take part in it. When they first asked me to do it, I told Lisey I didn’t really feel like a cancer survivor given that I still had cancer and was still having treatment. I felt like I was surviving but was not yet a survivor. Lisey took part in the opening ceremony and they managed well enough with five people in the circle.

There was a mass aerobics session to warm everyone up and then it was underway. We got a photo of our team together and off we they went. You see, I really hadn’t planned this well so the wheelchair was in the car. We didn’t think it was a good idea for me to take off walking in case I didn’t make it very far. Cousin Sonya and I decided we’d go back to the car and drive to the first pit stop and meet the team there, where I could join them with the wheelchair.

Cousin Sonya had originally signed up to do the walk but pulled out as she thought she would be of much better use being a general team helper, being there if I needed anything and looking after my daughter who wanted to be involved in the weekend but obviously wouldn’t have been able to walk 60km. I gave Sonya a bit of hard time when she first pulled out of walking but it turns out she was right about being better used as a helper. Sonya was there if anyone needed anything, she followed us around tooting and screaming ‘Go Good Titties’, she met us at pit stops with my daughter and she could go to the shop if someone needed something.  It was a very wise decision by Sonya, probably the only wise decision she has ever made in her life.

It was at the first pit stop that I experienced one of the MANY highlights of the weekend. A few weeks before the walk (in fact, while I was in hospital having chemo), I received a donation from a stranger. The name sounded familiar and I soon realised it was from the captain of the ‘Walkie Talkies’. The ‘Walkie Talkies’ were the biggest and highest fundraising team across all the walks in Australia. We had them in our sights at one point, thinking we could raise more money than them, but that was a tad ambitious given their team was at least twice the size of ours. Us, ambitious? Never! Danni, the captain, left a lovely message with her donation and said that she’d stumbled across our team page on the walk website and was so touched by the story that she felt compelled to donate.  We exchanged several emails and it turned out she lived not far from me and my chemo buddy, Karine, and one of her friends, Georgie, who Jenni and I had met at my very first chemo session, were also members of the ‘Walkie Talkies’. Small world.

So Sonya, my daughter and I arrived at the first pit stop and I questioned everyone who walked past me wearing a ‘Walkie Talkies’ t-shirt. “Where’s Danni?”, “Where’s your captain?” The support (not just the donation but moreso the emails and messages of support) from a complete stranger was so touching, so I was determined to meet her. Finally, she was pointed out to me. She had also spotted me, on the side of the footpath, wearing a ‘Good Tittie Team’ t-shirt, bald head partly obscured by a purple cap and a wheelchair beside me. “Are you Melissa?” she asked. I nodded. We hugged, laughed and chatted. I introduced her to my cousin but before I even had time to tell her my cousin’s name, she asked “Are you cousin Sonya?” She’d been reading my blog and knew all about favourite cousin Sonya, who at that point was feeling a little bit famous.

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Danni and I at the first pit stop.

 

Then we were on our way again. I walked and someone got left pushing the empty wheelchair. If I looked even the slightest bit tired or short of breath, I was ordered to sit down in that wheelchair and have a rest! I walked a fair bit on that first day, much to the amazement of everybody including myself, but if you ask anybody who pushed me in the wheelchair, I spent quite a bit of time sitting in it too.

My brother pushed me.

My brother pushed me.

My co-captain pushed me.

My co-captain pushed me.

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My cousins pushed me……

.....a lot!

…..a lot!

 

 

 

 

Kate pushed me, and cancer got the bird!

Kate pushed me, and cancer got the bird!

And Daisy pushed me too.

And Daisy pushed me too.

That first day saw us walking through the streets of Melbourne, past the hospital I’d spent a week at recently and would be back at for more treatment in the next week, through beautiful parks and gardens, past lane ways, past Federation Square and the MCG. We also walked right past Peter Mac, the hospital we were fundraising for, where staff cheered us on, high fived us and had photos with us. The pit stops were amazing; all run by enthusiastic volunteers. Some families even made their own pit stops out the front of their houses, serving cold drinks to weary and sore walkers. All of these (except for passing the hospital I was being treated at) were highlights.

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The captains at a pit stop.

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I had to get my photo taken with this lady at one of the pit stops.

 

 

 

 

 

 

 

 

 

 

My daughter happy to see me.

My daughter happy to see me.

And catching up with the G-town girls at a pit stop in a park.

And catching up with the G-town girls at a pit stop in a park.

 

 

 

 

 

 

 

 

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This family had set up their own pit stop out the front of their house. The support and encouragement was truly amazing!

Passing the MCG. Yep, that's a cousin still pushing me while I post some photos on Facebook. Not too taxing at all, this walk.

Passing the MCG. Yep, that’s a cousin still pushing me while I post some photos on Facebook. Not too taxing at all, this walk.

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‘The Good Tittie Team’ posing for an official photograph on the Princes Bridge, approaching Federation Square.

Outside Peter Mac.

Outside Peter Mac.

With my favourite brother and 'fave sis' outside Peter Mac.

With my favourite brother and ‘fave sis’ outside Peter Mac.

The captains outside Peter Mac.

The captains outside Peter Mac.

 

 

 

 

 

 

 

 

 

 

We mostly walked in small groups on the first day, caught up with each other at pit stops and then the composition of the groups would change. It was an opportunity to really catch up with people have a good chat. There was a lot of reminiscing and new friendships were made as not all the team members knew each other prior to the walk.

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Old friendships: Six members of ‘The Good Tittie Team’ who all went to high school together. There were also another five members in the team who went to the same high school but were in different year levels.

New friendships. Lee (primary school friend), Kristy and Naomi (Lisey's friends from Bendigo) and Lisa (a high school and very good friend).

New friendships: Lee (primary school friend), Kristy and Naomi (Lisey’s friends) and Lisa (a high school and very good friend).

It’s kind of funny going through these photos now. It looks like the only place I stood up was at pit stops! I promise, I did do some walking.

See, the wheelchair is empty! I must be in that group somewhere, walking.

See, the wheelchair is empty! I must be in that group somewhere, walking.

After many hours, the end of the first day approached. I think the last 3km went for 10km because for quite a while there, it seemed that no matter how far we walked, we still had 3km to go every time we asked! Finally we could see the end. Team members who had gone ahead waited near the finish line so we could cross together, as a team. We came in to a heroes reception with family members meeting us to cross the line with us and others forming a very loud cheer squad. Yes, that’s you President.

Crossing the finish line on day 1.

Crossing the finish line on day 1. Look, I’m walking!

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Still crossing the line.

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More titties crossing the line.

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And more titties.

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Aand that’s just about all of them.

 

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Best cheer squad ever! The President in the middle with her daughter, Karlene, on the right holding up that awesome banner she made! Papa Russ And Auntie Kaz from WA weren’t officially in the cheer squad as they walked, but they got back early and were there to cheer us over the line.

When we got back to ‘camp’ there were massages (not long enough), foot soaks, facials, dinner, limping, talking and even some dancing. Some people spent the night in tents at the campsite but the more sensible ones, like me, slept in a proper bed in a hotel room.

Tent city (photo credit to Lisey)

Tent city (photo credit to Lisey). You’d have to be nuts to sleep in one of those after walking 30km and facing another 30km the next day.

Foot soaks at camp. Even for those who hadn't walked too far.

Foot soaks at camp. Even for those who hadn’t walked too far.

And the wheelchair came in handy at camp too.

And the wheelchair came in handy at camp too.

 

 

 

 

 

 

 

 

 

 

I was keen to walk again (some of the way) on Sunday but I was mindful of my weary team who would probably find it painful enough just walking themselves without having to push me in the wheelchair too if I needed a rest. There was no shortage of volunteers to push me, but I have to say, some team members set a cracking pace (I’m looking at you Lisa N, and cousins Chris and Cheyne) to make sure they were nowhere that bloody wheelchair and couldn’t be roped into pushing. My daughter had had a big day and a late night, so I thought she could do with a sleep in too. I decided it would be fairest on everybody, including myself, if I just joined the team for the last few kilometres and crossed the finish line with them. So whilst the rest of the team set off at about 7 am, cousin Sonya, my daughter and I took our time, checked out of the hotel and met the team for lunch at one of the pit stops. Just before this pit stop, we were joined by one of our old high school teachers who most of us hadn’t seen for about 20 years! That was a beautiful surprise.

An old high school teacher joins two of her old students on the walk.

An old high school teacher joins two of her old students on the walk.

The team took off again and I got in the car with Sonya and my daughter. We met up with them again at a pit stop that was maybe 6km from the finish line.   I decided I would stay with the team from this point so the wheelchair came out of the car. I was feeling surprisingly good so when people kept insisting I have a rest, I just kept walking. Not wanting to let the wheelchair go to waste, others took the opportunity to have a rest.

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Fave sis having a rest.

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Daisy’s turn for a rest.

 

 

 

 

 

 

 

 

 

Which reminds me, we also lent the wheelchair to another walker, not from our team, who was struggling on the Saturday, and one of ‘The Good Tittie Team’ members (yep, a cousin) even pushed her. That wheelchair certainly came in handy.

Sunday was also a birthday for one of our team members. Unfortunately that occasion went by very under recognised as we were all a little bit pre-occupied with getting to that finish line. Thanks for giving up your birthday to walk with ‘The Good Tittie Team’ Waughbag.

Happy Birthday mole!

Happy Birthday mole!

There were a few casualties on day 2. Besides the blisters and sore muscles, there were lost toenails, a case of concussion from head butting a low hanging tree branch and a couple of knee injuries that meant one or two team members had to get on a bus and miss a lot of the walk. I won’t name them because I know they were disappointed that they couldn’t complete the entire walk.

Finally, a group of us arrived at the last pit stop. Those who had powered on ahead were waiting near the finish line so we could all cross together (they had been given strict instructions that we’d be crossing as a team), and those who were straggling behind were called and encouraged to get a move on so we didn’t miss the closing ceremony. At the last pit stop, which was about 4 km from the finish line, we were joined by a old primary school friend (who had gone to primary school with Lisey and I) who we probably hadn’t seen in about 25 years. There were five girls in our grade (in grades 5 and 6) at that primary school and we had four of them together at that moment.

We made our way along that hilly last 3 km, joined by kids and friends.

An old primary school friend joins us for the last 3 km.

An old primary school friend joins us for the last 4km.

And the kids make use of the wheelchair.

The kids make use of the wheelchair.

 

 

 

 

 

 

 

 

 

And the rest of the team sit and wait for us so we can cross the line together.

And the rest of the team sit and wait for us so we can cross the line together.

The WA uncles had already crossed the line. But they came back to cross it again.

The WA uncles had already crossed the line. But they came back to cross it again.

 

 

 

 

 

 

 

There were frantic texts from the cheer squad – “how far away are you? We’ve been waiting for hours!” Finally at about 2:30 pm, the sea of purple hats approached and finally crossed the finish line.

Here come 'The Good Tittie Team'.......at last!

Here come ‘The Good Tittie Team’…….at last!

And then we crossed!

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The captains leading ‘The Good Tittie Team’ over the finish line, joined by lots of supportive family members.

 

More of the family crossing the line; from left to right Uncle Max, cousin Cheyne, cousin Sonya's daughter (support crew), my mum, cousin Chris and Uncle Russ. Max and Russ had come all the way from Perth to be part of this team.

More of the family crossing the line; from left to right Uncle Max, cousin Cheyne, cousin Sonya’s daughter (support crew), my mum, cousin Chris and Uncle Russ. Max and Russ had come all the way from Perth to be part of this team. The birthday  girl is in the front right of this photo with her lovely kids crossing the line with her.

Someone very special also crossed the finish line with us, although I wasn’t aware of it at the time. One of our youngest team members, Daisy, who is Jenni’s (fave sis) niece by marriage, was walking for her Grandma and Jenni’s mother-in-law, Barb. We were all walking for Barb. Since it’s been a long time between blog posts, I may need to remind you that Barb was diagnosed with ovarian cancer around the time we signed up for the walk, so from the outset, she was one of the people we were walking for (since this walk was ‘The Weekend to End Women’s Cancers’). Daisy’s name on our T-shirts was Daisy ‘Walking for Grandma’ Johnson. Barb and her husband Len had donated money to our team. Sadly, Barb passed away just two weeks before the walk. Len met up with us both days, and walked some of the way with us. On day 2, he walked the last 4 km with us and just before we crossed the finish line, Daisy was given an urn containing Barb’s ashes to carry across the finish line with our team.

Daisy on the far right with her trusty GoPro in her left hand and Barb's ashes in her right hand. Next to her is her brother Charlie, then Len and Jenni with Jenni's son in the foreground and more of 'The Good Tittie Team' behind them.

Daisy on the far right with her trusty GoPro in her left hand and Barb’s ashes in her right hand. Next to her is her brother Charlie, then Len and Jenni with Jenni’s son in the foreground and more of ‘The Good Tittie Team’ behind them.

Len and Daisy.

Len and Daisy at camp.

So for a team that officially had 29 people walking on the day, we had at least double that crossing the finish line as we were joined by so many supportive and proud family members. Unfortunately we didn’t have enough ‘Good Tittie’ T-shirts for everyone. You can watch a video of us crossing the finish line here, compliments of Shane, our T-shirt designer (I hope it works!)

Once we crossed the line, there was lots of hugging, tears, fist pumping and posing for photos. The cheer squad had grown from day 1 as I think the President may have put word out that all family members must be present!

The proud captains of the awesome and amazing 'Good Tittie Team'.

The proud captains of the awesome and amazing ‘Good Tittie Team’.

The fave sis and I, and a bit of fist pumping.

The fave sis and I, and a bit of fist pumping.

 

 

 

 

 

 

With the fave sis and my fave daughter.

With the fave sis and my fave daughter.

The birthday girl with a sign made by her children. Thank goodness they made a bit of a fuss about her birthday!

The birthday girl with a sign made by her children. Thank goodness they made a bit of a fuss about her birthday!

 

 

 

 

 

 

 

 

 

 

Primary school friends; Lee, Lisey, Jen and myself.

Primary school friends; Lee, Lisey, Jen and myself.

The cousins. Thumbs up because they escaped the wheelchair on day 2.

The cousins. Thumbs up because they escaped the wheelchair on day 2.

 

 

 

 

 

 

 

 

Some of the cheer squad - Supportive uncles in the background, including Uncle Noof (the one who chose bowling over walking with his niece with cancer) and my dad in the gree

Some of the cheer squad – Supportive uncles in the background, including Uncle Noof (the one who chose bowling over walking with his niece with cancer) and my dad in the green top.

Unfortunately there wasn’t a lot of time for hugging, crying and photos with our cheer squad as the closing ceremony was about to get underway. Everyone who had walked was given a blue t-shirt to wear, except for the cancer survivors, who were given a pink T-shirt. Lisey, my sister-in-law (a breast cancer survivor in case you’ve forgotten) stood at the back of all the survivors and when we were asked to pair off and make our way to the stage, we rebelled and walked hand in hand as a group of three. We ended up coming to a stop right near the rest of ‘The Good Tittie Team’, still easily identified in their purple hats.

As we listened to speakers during the closing ceremony we noticed four survivors (in pink T-shirts) holding hands to form a circle and walking awkwardly towards the stage. I say awkwardly because they really could have done with another one or two people in that circle to make it bigger and easier for them to hold hands and walk. Yep, that was the survivors circle that Lisey was absolutely supposed to be a part of, and I should have been a part of. Oops!

You can see the awkward survivors circle up on the big screen.

You can see the awkward survivors circle, or maybe square, up on the big screen.

When the ceremony was over, we had one last team photo and then we all made our way home. Tired. Sore. Proud. Very, very proud.

'The Good Tittie Team' with a lot of our proud supporters.

‘The Good Tittie Team’ with a lot of our proud supporters.

As you’ve probably realised, if you’ve read this far, there were just so many highlights that weekend. I haven’t even described all of them! I left out the bit about cousin Sonya running over my daughter’s plates and being so upset I thought she must have run over my daughter! Perspective cuz, perspective. What started as a team of two (Jenni and I) called ‘The Good Team’ in about September 2013, quickly grew to 30. I don’t know what I was expecting when I started the team, but it wasn’t that. Lisey joined us and ‘The Good Tittie Team’ was born. There were eleven members of my family in the team including Uncle Max and Uncle Russ who had flown over from Perth to walk! Auntie Kaz from WA also walked with us on day 1 (and sensibly went shopping on day 2). There were primary school friends, high school friends, work colleagues/friends, three of whom had travelled from Geelong and there were friends who didn’t fit into any particular category other than being great friends! There were Lisey’s friends and my sister-in-law, Amanda’s cousin joined to walk with her too. We peaked at thirty, lost one to pregnancy, one to work commitments and one (cousin Sonya) to other duties. My brother, Mark, stepped in to replace one of the casualties and someone else joined us just days before the walk, so in the end we had 29 walkers/wheelchair pushers and a team of supporters just as big.

Thank you to each and every member of the amazing ‘Good Tittie Team’. Thank you to our amazing supporters. Thank you to our amazing uniform supplier and to Shane (our graphic designer) and to the printers who stressed us out. We had the best team uniforms without doubt! Thank you to every single person and company who donated to us. We were all blown away by the generosity of our donors. Thank you to my old high school and my daughter’s primary school who both held free dress days and raised over $1500 for us. Thank you to the team members who had garage sales and sold their belongings on eBay to ensure they raised $2000 and qualified to walk. Thank you to the team members who shared excess money they had raised amongst those who were struggling. That is team work.

We were part of something big that weekend. 1401 walkers raised $3.6 million for cancer research and we, ‘The Good Tittie Team’ contributed over $70,000!

Daisy had her GoPro there all weekend to capture the memories and she put together a short video which you can watch below. Just awesome!

Here is the proof of our trailblazer status.

And there it is. The word 'Tittie' on a plaque at Peter Mac. We did it!

And there it is. The word ‘Tittie’ on a plaque at Peter Mac. We did it!

So, a year later, as I finally got around to writing this post, I watched the video and looked at a lot of photos. I was reminded of what we achieved and how much fun it was. I contacted ‘The Good Tittie Team’ yesterday and said I thought it was time we got together again and did something good. Nearly everyone replied with “I’m in!” Rest assured, I’ll be chasing up those who haven’t replied! There might be more than one ‘good thing’ that we do, but at the moment we have our sights on a walk in Melbourne for Lymphoma Australia; ‘Legs Out for Lymphoma’ on August 22nd. Details haven’t been finalised yet but I can guarantee it will not be a 60km walk and it will only be a one day event.  So please, if you’re in Melbourne, keep 22nd August free to join ‘The Good Tittie Team’ and get all your friends on board. Being a walk for lymphoma, I’m thinking a team name change might be in order. ‘The Shitty Lymph Node Team’; that should raise as many eyebrows as ‘The Good Tittie Team’. But somehow I don’t think people will be yelling out “Show us your shitty lymph nodes” like they did with the good titties.

So there it is, a short 5000 word summary of a fantastic weekend. That was indeed a highlight of 2014. It was all pretty much downhill, sometimes very steeply, from there.

 

51. The preface to the catch up

Apparently I am writing a blog about my ‘adventure’ with the ‘good cancer’.

Apparently one of the reasons I started writing this blog was to keep my family and friends up to date, so they didn’t have to keep hassling me to see how things were going.

EPIC FAIL!

In fact, a lot of things about this adventure have been an epic fail! The fact that this adventure is still going is testament to that.

I haven’t written for a long time, with fairly good reason. I was sitting on the couch the other night, thinking to myself, “I really need to get back to that blog one day and catch up. I’m six months behind!” Then I did some calculations and realised I wasn’t six months behind, I was in fact eight and a half months behind! That’s longer than this whole adventure was supposed to be; remember, I was going to be cured after six months of chemotherapy. This is going to be some task, to catch up.

To say a lot has happened in the past eight and a half months is an oversimplification of monumental proportions. It has been pretty horrendous to say the least. But amid all the horror, I continue to be showered with acts of generosity, kindness and unwavering support. And I think I’ve managed to retain my sense of humour. But it hasn’t all been about me; mostly about me of course, but not entirely. In that time, in fact it’s only been in the last three months, no less than four people close to me have been diagnosed with cancer and started on their own adventure, or journey. I’ve connected with two local people, both young and both battling different forms of blood cancer and I’ve also become aware of and connected with an ex-work colleague who has been fighting the very same cancer I am fighting, only he’s been at it for ONE YEAR longer than me.

Several people have said that I should just quickly summarise the past eight months and then keep writing and stay up to date. Sorry, but I can’t give you a blow by blow account of the first six months which, as it turns out, was a walk in the park compared to what I have endured this year, and then skim over all the gory details of 2014. Don’t get me wrong, I still hated every minute of that ABVD treatment and I will still sympathise and empathise with anyone who has to go through it, but compared to a couple of rounds of IVAC and an autologous stem cell transplant, with a couple of complications thrown in for good measure, I would choose ABVD any day.

The good thing about being so far behind (I have some notes, but not many) is that I probably won’t remember too much detail, so my posts should be shorter. Although once I start writing, I’m sure irrelevant details I will feel compelled to share with you will come flooding back. You could say this post is entirely irrelevant. Why don’t I just start writing and get on with catching up? I don’t know.

The bad thing about being so far behind, is that some of the detail I am bound to forget to mention is the amazing things the amazing people I have been surrounded by have done. That doesn’t mean I have forgotten, and I am not grateful, I am just sure I will forget to mention it at the appropriate time.

So if you don’t get a mention (because apparently everybody wants a blog mention), please don’t hold it against me. I truly appreciate everything everyone has done for me and my family during this never ending adventure. There have been so many meals cooked, (although cousin Sonya hasn’t brought any food with her for about the last  five visits and it’s getting kind of embarrassing), play dates, dropping my daughter to school, picking her up, taking her to after school activities, taking her trick or treating, celebrating children’s birthdays while I’m in hospital, transporting me all over town because I’m too weak to drive, working bees, photo shoots, gifts, coffee/breakfast/lunch catch ups, donations, extreme fundraising efforts and much, much more. Thank you, thank you, thank you. If cancer could be cured by love and generosity, I wouldn’t be writing this blog now.

When I last wrote, back in June, I was writing about being slammed with the first round of IVAC in February. That was just before ‘The Walk’, the weekend to end women’s cancers, that I had ambitiously signed up for as it was going to be two months after I finished chemo. Yeah, right!

So the next post will be about ‘The Walk’, followed by the second slam with IVAC and all the joys that followed. Hopefully, some time soon I will catch up with reality. In the meantime……….

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50. Broken

Tuesday 18th to Friday 28th February, 2014

This is the bit where you find out how I was slammed by IVAC. Things went downhill pretty quickly after I got home from hospital. I was so looking forward to a good nights sleep in my own bed. I thought that would make the world of difference after a week of very little sleep, and I thought I would wake up feeling a bit more energetic. Not so.

I think I slept pretty well on the Monday night but on Tuesday I woke up feeling utterly exhausted. I was worn out and short of breath just getting up to go to the toilet (about 3 metres away from my bed) and having a shower felt like running a marathon (not that I ever have or will run a marathon, but I’m sure that’s how it feels). I was barely eating or drinking, although my mum always made sure there was a drink beside me and did her best to force me to drink it. I weighed myself and I’d lost 5 kg in about 10 days. Bloody effective weight loss program but I wouldn’t recommend it. The rash I had developed in hospital was getting worse and was starting to get a bit itchy.

On Wednesday, I felt even worse. If I had to describe how I felt, the word that came to mind was ‘broken’. I have never felt so completely drained and exhausted. If I could have stayed in bed all day, I would have, but I had to get up and leave the house to go into hospital for a blood test. All I can say, is thank God I didn’t have to go to the city and could go to the local private hospital which was 10 minutes away. I really don’t know if I could have made it into the city.

I was so sure I would need a blood transfusion that day and I was looking forward to it as I thought it might make me feel better. My mum and dad drove me in and I staggered around to the day infusion ward, the place I had received 6 months of chemotherapy that didn’t work. The nurses noticed immediately that I looked like crap and put me straight into a chair. They took some obs and other than a ridiculously elevated heart rate of 140 beats per minute, they were fine. Blood was taken from my Hickman line and sent off to pathology. The nurse who took it was pretty sure I’d need a blood transfusion too. She decided to give me a litre of intravenous fluid while we were waiting for the results because she thought I looked very dehydrated.

While I was there, my old haematologist (the unsympathetic one) came down to the day infusion ward to see his patients who were there. He asked if I was having fun. Ummm, no! I took the opportunity to show him my rash and asked him if he thought it was due to the cytarabine, as that can cause a rash. His response; “Yeah, but it’s pretty mild”. Such a hard arse.

The results came back and my Haemoglobin was 93 (normal for a female is 115 to 116). 93 is low but not low enough to require a blood transfusion. When the nurse told me the result I just said, “I don’t believe it, it must be wrong”. How the hell could I feel so completely drained, exhausted, short of breath and have a heart rate of 140 if I didn’t need a blood transfusion? I thought she either hadn’t drawn enough blood out of my Hickman line to discard before taking the blood for the blood test or I was so dehydrated that my haemoglobin was artificially elevated due to haemoconcentration. I will attempt to explain that for the non-medical readers. Imagine a glass of cordial. The cordial is the haemoglobin and the water is the rest of the fluid in the blood stream. If there’s not much water in the glass (dehydrated), the concentration of the cordial will be strong (high haemoglobin). If you add water, that will dilute the cordial so the concentration will be lower (low haemoglobin). So I figured if they gave me some intravenous fluid, which I needed because I was dehydrated, that would dilute or lower the haemoglobin to a more realistic value.

I can’t remember my platelet count but it was low, maybe in the 20’s. Normal is 150-400 so mine was pretty low but not low enough to need a transfusion. I was also neutropaenic so I scored an injection of G-CSF, my old friend. When the intravenous fluid finished, the nurse offered to repeat the blood test to see what my haemoglobin was but I felt a bit better and couldn’t be bothered waiting around any longer. I just wanted to go home and go to bed. She did my obs again and my heart rate was up to 140 again so she called the doctor but she didn’t appear to be concerned. It was pretty apparent that I wasn’t going to be going to any conference in the city on Friday so my follow-up appointment in the city hospital was cancelled and changed to the local hospital I was currently at. Then, I was on my way home and back to bed.

On Thursday, I felt much the same – drained and short of breath going to the toilet, so it was another day in bed. My good friend and ex-work colleague, Moggy, who now lives about 4 hours away, came to stay for a few days to help out with entertaining the children and driving me around. I think she was pretty shocked by how crap I looked and how hard this chemo had hit me. In happier days, we’d been on a couple of holidays to Bali together. They were the good old days, pre-cancer. When she fell pregnant with her first child about seven weeks after I fell pregnant with my second, I joked that she was copying me and wanted to be me. Well, I’m pretty sure she doesn’t want to be me now.

The one disappointing thing about Moggy’s visit was that we missed out on a photo opportunity so she could appear pictorially in the blog! Next time. There have been a lot of missed opportunities on this adventure so I just have to fill in the spaces with words.

Moggy drove me to my appointment for blood tests etc on Friday and spent the day with me while I received two units of blood and a unit of platelets. I think my haemoglobin was in the low 80’s and my platelet count was 7. I’m pretty sure my neutrophil count was zero too. I remember scratching myself the night before, as my rash was quite itchy, and I started bleeding, just in one tiny spot, but it would not stop bleeding. So I was not at all surprised by the need for a platelet transfusion. The pathology conference I had registered for went from Friday to Sunday. Even if I’d felt up to going on Friday, the transfusions I needed would have made that impossible as they took most of the day. I still thought I might go on Saturday if I woke up feeling better after the transfusions.

By that Friday my rash had got much worse. It was dark red and becoming quite confluent. The nurses were quite shocked by it as they’d never seen anything like it. If only my old haematologist had popped down that day. I might have even got some sympathy.

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I don’t think the rash is funny. I think I was laughing because I’m flashing half of my boob. And yes, that’s my Hickman line hanging out in the middle.

The blood transfusions didn’t give me the energy boost I was hoping for. When I woke up on Saturday the thought of even packing a suitcase (I had a hotel booked in the city) to go to the conference seemed too much so attending the conference was out of the question. My hair started falling out in big clumps that day. I had been pulling at it every day, wondering when it was going to start falling out. Only the day before it seemed to be firmly attached. My hair was about the same length as my dog’s hair and was making a real mess so as soon it started falling out, I asked Jenni to come over and shave it off. My daughter even got involved with the shaving this time.

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Good bye for the second time, hair. Even the dog got in on the action.

I’d been feeling the lymph nodes in my neck just about every day since I started IVAC, waiting hopefully for them to melt away. They didn’t change while I was in hospital and they probably weren’t expected to, but I was put on that medication, allopurinol, which I’d been put on when I first started ABVD. It is given to prevent tumour lysis syndrome which can occur when there is death of a large number of cancer cells, usually at the commencement of chemotherapy. Again, I’d been told I had small volume disease but again I’d been put on this medication. So I figured maybe the lymph nodes should disappear pretty quickly if the treatment was working. I didn’t ask the Professor that question when I was in hospital, just in case the answer was yes. I kept feeling my lymph nodes when I got home from hospital, and initially they actually got bigger! I didn’t panic though, as some other lymph nodes in my neck that I knew didn’t have lymphoma in them also got bigger. Maybe it was just inflammation from those cancer cells having their butts whipped; that’s what I hoped anyway. A few days later, I can’t remember exactly when, the lymphomatous lymph nodes did start to melt away. I think they were almost gone, or maybe even completely gone, by the time I was ready to be slammed with IVAC again. I was very grateful for that. I couldn’t imagine suffering through that chemotherapy and it not working. But that does happen to some people. Soul destroying.

The next thing on the agenda was Barb’s funeral on Monday 24th February. I was really hoping I would be well enough to attend but the way I felt over the weekend, I really wasn’t sure if I would make it. It would have been easy to spend the day in bed but I did feel marginally better so I rested in the morning and cousin Sonya picked me up in the early afternoon.  A few days earlier I had been given a beautiful gift that elicited tears when it was given to me.

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A treasured gift.

I wore the necklace with pride to Barb’s funeral. It really meant a lot to me that her family had chosen to give it to me. The service was very sad, but beautiful, and was attended by an enormous number of people wishing to pay their respects to such a lovely lady, and to show their  support to her family. Barb’s granddaughter, Daisy, showed amazing strength, getting up to sing ‘In the arms of an angel’ without faltering. Jenni read a letter she had written to Barb several weeks before she died and her son, Brendan, delivered a heartfelt eulogy. Another granddaughter, Ruby, also did a touching reading. There wasn’t a dry eye in the house during all of this. It was a fitting farewell to a beautiful person loved by so many.

During the service, seeing the heartbreak around the room, especially amongst those closest to Barb, I couldn’t help wondering if it would be my funeral next, and my devastated family and friends looking up at my coffin, asking why I’d been taken so young. I had to push those thoughts aside though, as the day wasn’t about me (although I did get a mention in Brendan’s eulogy). My daughter, who is 6, had met Barb a few times and asked me if she could come to the funeral. I don’t think she really understood death and what a funeral was and I didn’t really think it was appropriate for her to go. The thought did cross my mind however, that maybe I should let her go so that my funeral wouldn’t be the first one she attended.

After the service, a lady came and spoke to me about my cancer. When I told her I had Hodgkin’s lymphoma, she told me I was “lucky” I had a curable cancer. I could feel my friends who were beside me, go tense and hold their breath, wondering how I was going to respond. I bit my tongue and said nothing. A funeral was certainly not the place to let rip with all the reasons I didn’t feel lucky.

I just need to add one more thing about Barb. In my last post, I mentioned how Jenni and Brendan had tried to get her to say “Fuck you cancer”, but being the lady that she is, she refused. I also mentioned that although her death was supposedly expected, it was expected in a timeframe of weeks or months. In the end she went very suddenly and unexpectedly. I think that was her way of saying “Fuck you cancer”. She went on her terms, with dignity and didn’t allow cancer to call the shots.

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I clearly don’t have a problem saying it!

When I woke up on Tuesday, it was like somebody had flicked a switch and I almost felt normal. Well, it was probably far from normal, but I felt comparatively great. I even put some makeup on for my trip into hospital for blood tests and the nurses commented that I had colour and looked so much healthier than I had on previous visits. Blood was taken from my Hickman line and I was again given a top up of a litre of fluid while waiting for the results.

I had some very special visitors that day. Yeliena, a fellow forensic pathologist and member of ‘The Good Tittie Team’, and Eve. Eve is the Events and Sponsorship Manager of the Royal College of Pathologists of Australasia (RCPA); the college I am a fellow of. Among many many other things, Eve organises the annual Pathology Update Conference; the conference I had been planning to attend on the weekend. I had met Eve, or at least had spoken to her, at this conference in previous years. I’m sure she didn’t remember me but I knew who she was. I can’t recall exactly when I became aware, maybe late last year or early this year, that Eve had also had an adventure with Hodgkin’s lymphoma. When she found out I had it, she commented on my blog, called, texted and emailed.  She wasn’t stalking me, she was just desperate to get in touch with me to lend her support, as she knew exactly what I was going through.  As she said, there is a special bond between people with or who have had cancer, especially between those with the same cancer.

I’d had a lot of contact with Eve leading up to the hospital visit, as we had hoped to catch up with each other at the conference (she is from Sydney so was in Melbourne for a few days only). I think I provided her with daily updates of my condition and my hopes to be able to attend, but by Saturday it was clear that it wasn’t going to happen. She said she would sort something out and come to see me and Tuesday was the day. She lined up Yeliena to be her chauffeur and they made the trip to see me, probably about an hour away. Both her and Yeliena were surprised at how well I looked. I was surprised at how well I felt; like I said, it was like someone had flicked a switch.

Eve is a very unique kind of person. Very funny and straight to the point. She doesn’t take any crap from anyone and if she wants something or if you want something done and she can help, she’s on to it immediately. No mucking around. She’s quite crazy really, in a good kind of way. I don’t think she’ll mind me calling her crazy and if she does mind, she will let me know! When Eve arrived she said hello and quickly got updated on my situation and then she was off to get some food as she didn’t want me starving. She wanted to know how she could join the club of calling each other by surnames, as that’s what a lot of us do at work; I don’t actually know how or why that started, but we do. So she became a member of that club immediately and we now pretty much only call each other our surnames. If she calls me Melissa, I know it’s serious.

Like me, Eve likes to joke about being the centre of attention so she made sure she’d get a mention in my blog when I got back to writing. We decided we had better take a photo to put in the blog so we asked a nurse to take a photo of us all.

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This is Eve, touching up her make up before having her photo taken for this blog. I thought that was hilarious so I took a photo of it.

 

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Clowns to the left of me (Eve), jokers to the right (Yeliena), here I am…… (That’s left and right of me, not left and right in the photo). You can see the chips and drinks provided by Eve on the table in front of me, along with the food provided by the hospital. I wasn’t going hungry that day.

So to Eve, I say thank you. Not just for visiting me that day, but for everything. She has constantly kept in contact, mostly to ask when I am going to blog about her – no that’s a joke, although she has asked a few times. She has been an overwhelmingly wonderful support and has also been very useful with her contacts! Many of you may have read the article about me in ePathWay, the online magazine for the Royal College of Pathologists of Australasia (RCPA). That was of course, facilitated by Eve. If you haven’t read the article, you can read it here. You’ll just have to scroll down to the fourth story.

There will be many more mentions of Eve in the posts ahead (but no accompanying photos) but I hope this blog debut has been worth the wait for her. Eve recently marked 4 years of kicking Hodgkin’s butt (or was she just “lucky” and got the good version of the good cancer?). Either way, she endured some tough treatment; she achieved remission, and has stayed there, after first line treatment with some ABVD and BEACOPP (maybe I should have tried that). It was a tough gig but she got through it and now she’s giving something back. She’s on the board of the Prince of Wales Hospital Foundation, she’s a volunteer for Lymphoma Australia AND she’s a consumer representative on the Quality and Clinical Effectiveness Advisory Committee for the Cancer Institute of NSW. And then there’s that full-time job with the RCPA I mentioned. You’d have to be a little bit crazy to fit all that in your life! She’s a pretty special kind of person. Given my competitive nature, I’m now going to have to try to get on more boards and be a volunteer for more organisations than Eve! But first, there are bigger fish for me to fry.

Oh, I forgot to mention the results of the blood tests. I can’t remember numbers but they were all fine (for someone with cancer) – no need for blood and platelet transfusions and my neutrophils were back over 0.5. My haematologist came to see me and she said that my blood counts had started to recover, I would be back in hospital next week for the next cycle of chemotherapy. The results of blood tests on Friday would determine if that would be earlier or later in the week.

Over the next few days, I felt a little bit better each day, which was very fortunate, as ‘The Weekend to End Women’s Cancers’ was that weekend. It had been looking like I wouldn’t even be well enough to turn up to the event, but when I started feeling better, I knew I’d be there, I just wouldn’t be walking 60 km. The next few days were spent making sure every member of our team raised the $2000 required to allow them to walk. We all got there in the end and we were the highest fundraising team to have all their members qualify. Most people in our team chose to stay in the provided tents on the Saturday night. I hadn’t been too keen on that idea. My camping days ended after spending 46 days in a tent around Europe on a Contiki tour in 1997. Still having cancer was my green light to book a hotel. I booked it for the Friday night too as there was a very early start on Saturday and a team dinner in the city on the Friday night. I also had to go to hospital on Friday for more blood tests. Again I can’t remember the results but my counts were stable so I didn’t need any transfusions. A few people had expressed concern about me going to ‘The Weekend’ as it was going to be a very crowded place and perhaps not ideal for someone with a compromised immune system. I was quite confident my neutrophil count would be OK as I’d had some pretty decent bone pain from the G-CSF injection. My neutrophil count was 16.1 (that’s high), so I had enough neutrophils to share around with a few others. That provided some relief to worried family and friends. After the hospital visit, I went home to pack while Jenni collected (that’s putting it nicely) our team uniforms.

It was a phenomenal weekend, but that’s for another post.

49. IVAC – Slam 1

Monday 10th to Monday 17th February, 2014

Just in case you’ve forgotten, IVAC is the ‘salvage chemotherapy’ I would be receiving. I’ve called this slam 1, as opposed to round 1, the term I used for the rounds of ABVD, for very good reason.

In the lead up to my admission to hospital I received a phone call from a haematology registrar on the Friday prior, to inform me that a bed had been booked for me to be admitted on Monday 10th February. At that point I had no idea how long I’d be in hospital for so I thought I’d take the opportunity to try to get some information from her. It quickly became apparent that she really did not have much of an idea of what was going on and I was not impressed. She used terms like induction chemotherapy and told me I’d need a bone marrow biopsy to assess my response to the chemo. A bone marrow biopsy? WTF? I asked her why I would be having a bone marrow biopsy when I didn’t have cancer in my bone marrow. How can you assess how cancer is responding to treatment by doing a biopsy in a place where there is no cancer? She explained that she was new to this hospital and different hospitals have different protocols. I also asked about the Hickman line being put in and it seemed that hadn’t been booked.

I got off the phone and left a message for my haematologist to call me back. She called me soon after and I asked her about the bone marrow biopsy – no, I wouldn’t be having one. I also asked her about the Hickman line as that was the first thing that needed to happen when I got to hospital. She said the registrar must have misunderstood the instructions and that she would call me back. The registrar called me again and told me I was on the list for insertion of a Hickman line on Monday morning and I would need to be admitted at 7 am. I asked what time the procedure would be and explained that I lived about an hour away so I didn’t want to come that early if I didn’t need to. She said the procedure would take place before lunch but I needed to be there at 7 am. Why? To get the ball rolling.

I wasn’t intentionally being difficult but I know how public hospitals work. I knew if I got there at 7 am there would be a very good chance I would sit around for a few hours before I had the Hickman line inserted. To get in at 7 am would involve getting someone to look after my kids and take them to school and childcare, and also getting someone to look after Jenni’s kids and taking them to school, as she was going to drive me into hospital. If I had to be there at 7 am, so be it, but I didn’t want to get in there that early for no good reason.

Another phone call to my consultant followed by another phone call from the registrar and I was told the Hickman line would be put in at about 11 am so I needed to be there by 10 am. That was much better as it meant Jenni and I could drop our kids at school in the morning and then go straight into the hospital. I think I had already become a typical doctor making a bad patient and I hadn’t even been admitted to hospital. I also sensed that the registrar and I were not going to get along. I had ascertained that I would be given chemotherapy over 5 days so if I was admitted on Monday, I expected to be in hospital until Friday.

I went to a trivia night organised by members of ‘The Good Tittie Team’ that night. It was a great night and from memory around $4000 was raised for our team. On Sunday, I had morning tea with friends at my house and I got to eat some red velvet star cheesecake, the dessert I had missed out on at a Christmas get together last year, after throwing up in my friends back yard and going home early. Thanks Lisa.

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The famous red velvet star cheesecake. Yum!

Soon enough it was Monday morning. Jenni and I dropped our kids at school and headed into hospital. The admission process took a while. I was admitted as a private patient and was told that I would not be guaranteed a single room (as would be the case if I was admitted to a private hospital) but that if a single room was available I would be given it upon request. I eventually got to the ward and very quickly realised that I was a stuck up private patient. I went to a public high school and when I started my medical degree, I was in the minority, as most people came from private schools. I thought they were all a bit stuck up. Now I was one of them.

The room was a double room and it was not nice at all. It was tiny, dated and just did not seem like a nice place to endure five days of chemotherapy. I immediately wanted to go back to my local private hospital. Jenni said she would fix it for me by telling the nurses I was a private patient and asking if I could be transferred to a private room. She was told I had no chance. There weren’t many private rooms on the ward and they were used for patients who needed to be isolated. It was going to be a long week.

Not at all surprisingly, my Hickman line that was supposed to go in at 11 am went in at about 2 pm, by which time I was starving as I had been told to fast. The procedure took place in the radiology department and I was apparently sedated with fentanyl. I called it a public hospital dose of fantanyl as I didn’t feel at all sedated and didn’t find the experience particularly pleasant. The line was inserted in my right upper chest and then tunnelled under my skin to my neck, right under by perfect scar from the lymph node biopsy last year. That bit was particularly painful as the radiologist had to get it through the underlying scar tissue. In approximately that area, a small incision was made and the line was inserted into a vein in my neck and fed down towards my heart.

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This is not me, but this is what a Hickman line looks like.

 

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And this picture shows where it tunnels under the skin and enters a vein in the neck

 

 

 

 

 

 

 

 

 

By the time I got back to the ward, the nurses had decided it was too late to start chemo that day so I would be starting tomorrow, so my Friday discharge was now pushed out to Saturday. I decided to escape from hospital that night and go out for dinner with friends. I didn’t technically escape, I just liked to use that term as I felt like I was going to be ‘locked up’ for the next week. I got permission to leave and I returned at the requested time so I could start pre hydration for the chemotherapy – that basically refers to giving me a lot of intravenous fluid to protect my kidneys from the chemotherapy drugs. I also met the registrar that day and she was actually lovely. We were going to get along OK after all, I just wasn’t going to ask her or the resident any questions about my treatment. I would direct all my questions to the consultant.

I had very little sleep that first night due to my room being close to automatic doors that constantly opened and closed, rather loud nurses (just doing their job), overnight observations, constant announcements over the hospital loud speaker system, constant beeping of intravenous infusion pumps and a room mate who snored, talked in her sleep and grabbed hold of my bed and gave it a good shake every time she got up to go the toilet. Have I said it was going to be a long week?

On Tuesday morning the chemotherapy started. I kept asking the nurses what side effects I should expect as I was expecting it to be pretty horrendous spending much of the time throwing up. They told me I shouldn’t really experience any major side effects while I was in hospital and that any nausea or vomiting could be controlled with a cocktail of drugs.

I was given some education about the drugs I would be receiving and the side effects each one would cause. As I’ve said the regimen I was being given was called IVAC  and consisted of 3 chemotherapy drugs:

  • I for Ifosfamide
  • V for Etopside. Hang on, Etoposide doesn’t start with V but it’s also called VP-16
  • AC for Ara-C or Cytarabine

The side effects are pretty similar for all of the drugs and include hair loss, nausea and vomiting, diarrhoea, loss of appetite, drop in blood counts and more! The loss of appetite was pretty quick to hit, partly due to the chemotherapy and partly due to the disgraceful stuff served up that was supposed to be food. It all smelt the same and was truly horrendous. I promise I am not exaggerating. For the first few days I was offered tea and coffee for morning and afternoon tea. I don’t drink coffee and I was told to avoid hot drinks to reduce the risk of developing mouth ulcers. My room mate however, was being delivered Big M’s, muesli bars, cheese and biscuits etc. I asked one day if I could have something other than tea or coffee. Apparently I had to see a dietician first. So after several days of basically not eating, I was finally referred to a dietician. My diet was changed to ‘high energy, high protein’ and I too could order Big M’s and all sorts of other things for morning and afternoon tea. I was also provided with a supplemental menu items list so I could order things that weren’t on the standard menu; different meals, soft drink, hot food for breakfast for example. It would have been nice to know about that a bit earlier!

I would also be given a continuous infusion of a drug called Mesna to protect my bladder from haemorrhagic cystitis (bleeding into the bladder) which is caused by the Ifosfamide. Oh, and then there was the steroid eyedrops that I had to put in my eyes EVERY two hours to prevent eye problems caused by cytarabine. I was lucky enough to have that frequency reduced to every four hours overnight.

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The very appropriately named eye drops. In case you don’t know, FML = Fuck My Life.

I didn’t have every drug, every day but to be honest, I can’t remember what I had. I think the Etoposide and Ifosfamide might have been every day but the cytarabine was only given on 2 days so I could stop the lovely eyedrops 48 hours after that finished. Once the chemotherapy started, extra infusion pumps and bags of fluid kept getting added to my IV pole, the IV pole that I was permanently attached to for the next few days, until it looked like this:

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I was weighed every day and if my weight went up by more than 1 kg I had to have frusemide, which is a diuretic to make me pee. As if I wasn’t peeing enough with all the fluid they were pumping into me! After a dose of frusemide I would seriously go to the toilet and pass very large volumes of urine every 10-15 minutes. Quite inconvenient when you’re feeling like crap and just want to stay in bed. At some point I was informed that the Mesna would need to run for 24 hours after the chemotherapy finished so my Friday discharge that became Saturday was now Sunday! I hoped it didn’t get extended again.

I met my room mate but we didn’t talk too much as she was going through a very difficult time. I think she was in her 50’s and she had leukaemia. She had a stem cell transplant last year (from a donor) and had just found out that her leukaemia was back and she was out of options. She was going to die in a few months. There were apparently a couple of clinical trials she could take part in but she was told they would probably do more harm than good and she needed to think about the quality of her life. She chose to not try any further treatment. Because the rooms are so small, I overheard every conversation she had telling people she was dying. That was obviously nowhere near as hard for me as it was for her, but it was not nice to listen to. At one point, when I was in the midst of chemo, in bed and feeling particularly crappy, a social worker asked me to leave the room so they could have a private family meeting. I thought that was rather inappropriate.

Her sister came in to visit her one day and told her she had to “keep fighting” and she couldn’t “give up”. I felt like slapping her. My room mate had accepted she had done all she could to try to overcome the cancer. I’m sure she’d been to hell and back with the treatment she had endured and she didn’t want to endure anymore if the chances of success were minimal. Understandable. So did she “give up”? I don’t think so. I think she accepted her situation.

I’ve always hated the language used around cancer, even before I was diagnosed. If someone dies, they “lost their battle”. Did they not fight hard enough? No, they just didn’t stand a chance against this bastard of a disease. I’ve just never liked the connotation of ‘losing’, but maybe that’s my competitive streak. Whilst a positive attitude and determination are probably good qualities to have, clearly they are not enough or death rates from cancer would be pretty low. Take Jim Stynes for example. He had a huge number of operations and I think he tried every type of treatment known to man kind, including some very alternative ones. He died. Why? Not because he didn’t fight hard enough, because he had metastatic melanoma and he didn’t stand a chance from the moment he was diagnosed.

If I die, it won’t be because I didn’t “fight” hard enough, it will because the treatment I endured didn’t work like we were hoping. If I go into remission or I’m cured, everyone will tell me how I kicked cancer’s butt, and how strong and determined I was. I will accept those comments and I’ll probably like hearing them but they won’t really be true. It will be the chemotherapy that whipped the cancer’s arse, along with mine along the way. I suppose you have to be pretty strong to endure chemotherapy but strength alone will not cure cancer.

I could go on but I won’t. Instead I will refer you to a very eloquently written post in my friend Lisey’s blog, about the language used around cancer. I loved it when she wrote it, before I knew I had cancer, and I still love it now. You can read it here.

Well, I’ve digressed again. How did the chemo affect me? I have to say that overall, it was not as bad as I thought it would be. I think the unknown is always worse than reality. I had some nausea but got straight onto that with drugs the moment it appeared. I think I only threw up once or twice. After having no sleep the first night in hospital due to noise, I sourced some ear plugs but then the next night, or maybe it was the one after, I was awake most of the night with cramps in my thighs. My magnesium had been low and that was replaced during the day. Low magnesium can cause cramps so they decided to give me a bit more overnight. When that hadn’t caused any relief after two hours, I looked at the pump and realised it wasn’t even running. I then resorted to endone which did the trick and I got some sleep. At one point during the night I was standing up beside my bed as that was the most comfortable position to be in. A nurse came in asked why I was standing up and when I told him, his response was “whatever works”. Overwhelmed by the sympathy!

In general, I found the nurses to be friendly, efficient, caring and very knowledgable. I also noticed there were a lot of accents amongst them; American, English, Scottish, Irish. I mentioned this observation to a male nurse with an English accent and asked him if they all lived here or they were on working holidays. His response, “I’m from Brisbane”. OK, picked a good nurse to ask that question. One of my visitors did agree with me though; he definitely sounded like he had an English accent.

I started spiking fevers on about day 3 of chemo, which could have been due to the cytarabine (a known side effect) or an infection. Since an infection was the most concerning possibility, I had to have a number of tests to exclude that and I was started on broad spectrum antibiotics which in turn caused diarrhoea and a generalised rash. Oh the joys.

I had quite a few visitors, which was nice, including some work colleagues, one of whom walked in and exclaimed, “You look like shit!” I was actually quite happy with that observation as I’d been telling people for months that I do look like shit sometimes. Most people only ever saw me when I was out and about after recovering from chemo and were always surprised at how well I looked. Another work colleague, Natalie, made a number of visits, bringing me in lollies and lemonade (before I got changed to the special diet) as that was about all I could manage to eat and drink. She also bought in a box full of cards, notes, gifts, DVD’s and more lollies which she had collected from the generous souls at my workplace. I also had a visit from cousin Sonya who brought my daughter in to see me. She gave me a flower for Valentine’s Day and had drawn me a picture (my daughter, not Sonya, that would be weird if Sonya drew a picture for me), with a gorgeous note on the back, to brighten up my room. We decided it probably wasn’t wise to bring the nearly two year old son in given the size of the rooms and the lines going in to me that I’m sure he would have loved to have pulled out, or tripped over.

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I think the most  unusual visit I had was from Jenni and her husband, Brendan, after they’d been out for dinner in the city. It was 1 am! I was awake so they didn’t wake me but I did it suggest it probably wasn’t an entirely appropriate time to visit. “It’s OK”, said Jenni, “I already checked with nurses and there are no set visiting hours on this ward”. Never mind my room mate in our very intimate room. I think she was a heavy sleeper so I don’t think they woke her and it was a nice surprise visit.

The next morning, Sunday 16th February, I remember all too well, unfortunately. I had a shower and in the process of doing so, managed to make a mess of the dressing on my Hickman line such that it would need to be replaced. I got back into bed and there was a text message on my phone. It was from Jenni, telling me her mother-in-law, Barb, had died. My male nurse walked into the room soon after and I was crying. I told him why I was crying and also showed him the dressing over my Hickman line to let him know he’d need to redress it. Because I was quite shaken, I’m pretty sure I exposed my entire right breast to him when I was showing him the dressing.

I’ve talked about Barb before in this blog. She was diagnosed with advanced ovarian cancer a couple of months after I was diagnosed with cancer and she was one of the people we were doing the walk for. After initially responding well to treatment, her cancer recurred early this year and she and her family were told there was nothing more that could be done. She accepted the news with dignity. She constantly told me that I deserved to get better more than she did, but I did not agree with her.

Barb is one of the most beautiful people I have ever met, probably the most beautiful. She never had a bad word to say about anybody and she never swore. Even when she knew she was dying of cancer, Brendan and Jenni tried to make her say “Fuck you cancer”. It had always been a challenge to make her swear and nobody ever succeeded. She still wouldn’t say it and the best they got was “Damn you, cancer”. When Barb had initially been admitted to hospital, her beloved and devoted husband, Len, who is just as beautiful as her, was also in hospital undergoing major heart surgery. Not only was it an extremely traumatic time for her children, having both of their parents very unwell in two different hospitals, there was a real concern that Len and Barb may never see each other again. Fortunately Len bounced back from surgery extremely well and Barb’s condition improved so they were able to spend some time together before she died.

When Jenni and Brendan came to visit me at 1 am the night before, which was actually only a few hours earlier, they told me they had been to see Barb that evening before they went out for tea, and she was doing well. Although her death was supposedly expected, in the end it was very quick and completely unexpected. Fortunately, Len was by her side.

Jenni and I visiting Barb in hospital

Jenni and I visiting Barb in hospital. She told me I looked better without a scarf on.

During my admission, I had several visits from the consultant on ward service. I was very pleased he was a Professor. I like Professors. In general, they’ve been around for a while and they know their stuff. I had saved all my questions for him. Obviously now I can’t remember all the questions I asked him but I know he ran through what my planned treatment would involve. He talked about the fact I’d be having an autologous stem cell transplant (if the lymphoma responded to the ‘salvage chemotherapy’ of course) and also asked if I had any siblings so they could be tested to see if they were a match for me and could donate their stem cells to me. I asked why he was doing that if I was having a transplant with my own stem cells. He said he wanted all available information and made it clear that whilst there was a plan at the moment, that plan could change along the way. Never a truer word spoken.

During the first visit, he told me that it is very uncommon to die from Hodgkin’s lymphoma and he told me I had more than a 50% chance of being cured by the treatment I was about to receive. I liked hearing that word cure as the haematologist I’d seen the week before seemed very determined not to use it; she would only talk about a durable remission. During the next visit, I pointed that out to him and said I was a bit confused by the terminology. Was the goal really to cure me? He was adamant he was aiming for cure and I was happy to hear that, of course. He even said the other haematologist was a wuss.

I remember asking why IVAC had been chosen as the ‘salvage chemotherapy’ regime as I was aware, (although certainly didn’t know the details of), that were a large number of regimens available. He reeled of the names of a number of other regimens and said he had used them but he always tended to end up with IVAC, so he was just cutting to the chase. I liked that answer. When I saw him on Friday, I asked if I would be able to go home on Sunday as that is when the Mesna would be finished. He said it would depend how I was but that he’d prefer I went home on Monday as he would like to see me before I went. Another night in hospital.

I had a visit from the transplant nurse to get the details of my siblings so they could be sent information about being tested to see if they matched me. She asked if I thought they’d be willing to do it. Of course they would! It would be a competition and if anybody matched they would claim that as a victory for sure. I asked her how the stem cells would be collected as I had assumed it would be from a bloody big needle in the hip, like a bone marrow biopsy, and therefore rather painful. This was not the case however. Injections would be given to mobilise bone marrow stem cells and send them out into the peripheral blood. They would then be collected in a manner similar to donating blood, so it would be relatively painless. I did tell Jenni that I was a little disappointed that if she did ever have to donate her stem cells to me, she wouldn’t have to experience much pain in doing so.

I think the Mesna finished pretty late on Sunday so I probably needed to stay until Monday anyway. The registrar and resident came around early in the morning and then I had to wait for them to come back with the consultant. I was dressed, packed and ready to go. When he came around he made sure all my follow up appointments had been organised.  I would go to my local private hospital for a blood test and transfusion if I needed it on Wednesday and then on Friday I would come back to this hospital, as I was planning to be in the city for a conference. I asked him how I should expect to feel in the next few days and he said I’d probably feel a bit washed out but that’s about it. That didn’t sound too bad to me. I had registered to go to a pathology conference that coming weekend so I asked him if it would be OK to go to that given that my immune system would probably be non-existent by then. He said if I felt OK, I could go and also told me that I was more likely to develop an infection from the bugs that lived on and in me, than I was to get sick from a bunch of pathologists coughing over me.

I was given the OK to go home and soon after got kicked out of my bed as it was needed for another patient. Joanne (the other favourite sister) came to pick me up. We had to wait a while for my drug supply from pharmacy but eventually we were on our way. So, whilst that 8 days in hospital wasn’t the most fun I have ever had, and it was a long time to be away from my kids, it wasn’t as bad as I had thought it would be. So, why did I call it slam 1? Well, things got a bit worse after I got home.

I did have a nice welcome home however, finding this message pinned to the door.

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Well there’s a lazy 4700 words; now three and half months behind.

48. The new plan

Tuesday 4th February, 2014

On 25th January, when I finally got up to date with this blog, I wrote “So, the blog posts will be up to date and live from now on”. I then posted on 28th January, with shitty news (about the positive PET scan), and on 6th February, with some truthful news (knowing the PET scan would be positive). Then, as you know, nothing. So I now find myself four months behind on writing about my adventure. I will now try to catch up as quickly as I can, which will be difficult given how much has happened and how much I write. As you read the posts that follow, I am sure you will understand why I haven’t written for a while.

I last wrote about receiving the news that my PET scan following 6 months of chemotherapy didn’t show the result we had all been hoping for, and I still had cancer. At that point, I didn’t know exactly what that meant in terms of further treatment required, as I didn’t see my haematologist until a week later.

 

My appointment with my haematologist was on Tuesday 4th February, one week after the PET scan. You may recall that the last time I went to see a haematologist after a PET scan, someone in the car park gave me their parking ticket which still had time left on it and that was one of three good things that happened that day. Well on this day, I was again given a parking ticket with time left on it, but this time I knew it wasn’t going to be one of three good things to happen as I was not going inside to get good news. Unless of course my radiologist friend had looked at the wrong PET scan and I really was in remission. Now that would have been good news.

My appointment with my haematologist was actually pretty brief. I had spent the whole week thinking of questions I wanted to ask him but I didn’t write them down. My main goal had been to see if I could get any sympathy from him, because he’s a bit of a hard arse. I was going to ask for it, but I forgot. When he called me in, I quickly reassured him that I already knew the results of the PET scan so he didn’t have to break shocking news to me, not that I think it would have been difficult for him.  Cancer doctors are pretty used to it I think. He said “that’s a bit of a bummer isn’t it?” which I thought was putting it nicely.  Jenni had asked me if I thought he would be shocked. I said I thought he’d be surprised but not shocked. So I asked him if he was surprised and his response was that “we are always surprised when patients don’t behave in Hodgkin’s disease”. Well I think I behaved, it was the stupid cancer that didn’t.

He went on to say that looking back, the one thing that was not “super dooper” was that the re-staging PET scan after 4 hits of chemo, although showing “improvement plus plus”, wasn’t negative. You might recall I asked him about this after the scan because he told me from the outset he expected that scan to be negative. He said that while it was never going to influence anything he did at the time, it always remained a question mark for him. He didn’t tell me that when I asked him at the time. He was very non-committal, as he is. I wonder if he had have told me about this question mark for him, would I have pushed him to change my chemo regime? Even if he did change it, who knows if it would have changed the outcome. I might have just had the pleasure of more extreme side effects and still had cancer at the end of it.

He explained the most recent PET scan showed low bulk disease, all above the diaphragm but in multiple sites so it was not amenable to treatment with radiotherapy, which is sometimes considered if there is just one troublesome spot.

“So, you get to score yourself some stronger therapy”, he said. I asked what that meant. Was he talking about BEACOPP (the one the German’s tend to use instead of ABVD) or a stem cell transplant? He said the first step would be some ‘salvage chemotherapy’  which would be upper grade in intensity  compared to the ABVD I had just had. He had constantly told me how well tolerated ABVD is and it constantly annoyed me because I hated it, although in hindsight I probably did tolerate it well. “The next step is definitely tougher” he said. Coming from him it must be bloody tough. He explained that following the salvage chemotherapy, the response to it would be assessed and then it would be followed by an autologous stem cell transplant.

I wanted a name for this chemo I would be having but he couldn’t tell me because, as he informed me at that point, he wouldn’t be delivering it. He had referred me to the doctor I had seen to get the results of my re-staging PET scan (when he was on holidays), the one who I thought I had been overly positive, as she also worked at a larger hospital in the city where this further treatment would take place. He asked if I was happy to be referred there. I said I didn’t really have a preference but I just wanted to know that no matter where I was referred, the same treatment would be recommended. He said everyone would recommend salvage chemotherapy followed by an autologous stem cell transplant, but the salvage chemotherapy regimes might differ slightly.

I didn’t know a lot about stem cell transplants at that stage; I just knew there were two types – autologous (using your own stem cells) and allogeneic (using stem cells from a donor).

I asked him what the success rate of treatment was now given that I hadn’t responded to the initial chemotherapy. He said we were still looking at curative treatment, which was nice to hear, “we had just hoped it would be a bit easier”. Aint that the truth.

I left that appointment still feeling OK about things, probably because the word cure had been used. It’s a nice word to hear. I then sat in the waiting room, sent a few texts to people to let them know I’d have to see another doctor to find out what was going to happen next, and waited to see this doctor, who I had previously thought was too positive. That was about to change. As I waited and saw her come out of her room to call in other patients, I noticed that she was pregnant. I joked with cousin Sonya that I thought that was a bit inconsiderate of her as it wouldn’t do much for the continuity of my care!

I was called into her room and the conversation started with her saying my PET scan didn’t look as good as the last one. “That’s a bit shit!” she said. Talking my language. She explained that I would require “salvage chemotherapy”, followed by stem cell collection, followed by an autologous stem cell transplant (using my own stem cells) and that they could only proceed with the transplant if I responded to the salvage chemotherapy (50% improvement or better on PET scan). She further explained that the stem cell transplant is a BIG dose of chemotherapy which wipes out my bone marrow and would take me months and months to recover from. Hence, my stem cells would be collected prior to the big dose of chemotherapy and then put back in after the chemotherapy so my bone marrow could regrow and I could recover from the huge dose of chemotherapy in weeks as opposed to months.

Take home message number 1: An autologous stem cell transplant is actually a MASSIVE dose of chemotherapy! The stem cell transplant bit is just managing a side effect of that massive dose of chemo (wiping out the bone marrow).

She said I would need to be in hospital for a few weeks to manage side effects of the big dose of chemotherapy. I asked at that point why a bone marrow transplant isn’t done as first line treatment. I would find out the answer to that question myself in a few months! Her answer was that it is very intense and that most people with my type of lymphoma respond well to the initial chemotherapy that I had (ABVD) and go into remission and stay in remission. Not me.

She said that when I was initially diagnosed, I had a 60-70% chance of going into remission with ABVD (I’d been given better odds than that but that’s irrelevant). She said ABVD is tough because it takes 6 months but that it is more manageable than high dose chemo. She explained that Hodgkin’s lymphoma is usually very chemosensitive and even with very advanced and bulky disease, remission can be achieved in most people with ABVD, so that’s why they don’t use high dose chemotherapy upfront, because most people don’t need it. I didn’t have expected outcome with ABVD so I needed ‘salvage chemotherapy’. This would involve giving me a combination of drugs I hadn’t already been exposed to, the aim of which was to shrink down what was there prior to transplant. The less disease you have on board at the time of transplant, the better the outcome.

She went on to explain that ‘salvage chemotherapy’ is done to debulk and demonstrate that even more intensive chemotherapy (the stem cell transplant bit) is going to be worthwhile. If the cancer is completely resistant to the ‘salvage chemotherapy’ there is no point doing the transplant as it would just cause side effects with only a small chance of benefit. She said I would need to demonstrate a response to the salvage chemo in order to go on to have the transplant, but that I didn’t need to be in complete remission. She also explained that I was unlikely to be cured with ‘salvage chemotherapy’ alone but that after a transplant, remission was much more likely to be long term. I asked what would happen if the ‘salvage chemotherapy’ didn’t work and she said we could try a different type of ‘salvage chemotherapy’ and then go on to transplant but the chances of having a long term benefit from transplant go down if the lymphoma doesn’t respond initially.

I was told the chance of success with ‘salvage chemotherapy’ and stem cell transplant was in the order of 50-75%; success being defined as the likelihood of getting into a “good durable remission”. Hmmm, not using the word cure. I then asked if it was the case that because I hadn’t responded to the initial chemotherapy (the ABVD), if I did then achieve remission following the transplant, was the lymphoma more likely to come back in a few years. “Yep!” She said that if you need additional chemotherapy at this stage, there is a higher long term risk of relapse than if you just go into remission with standard chemotherapy.

She then injected some positivity into the conversation and said that my lymphoma was likely to be chemoresponsive and I was likely to go into remission. “You’re not stuffed”, she said. I was told that there are other types of lymphoma where I would be stuffed if I was in this situation I found myself in now; not responding to initial standard chemotherapy.

The salvage chemotherapy was then explained in more detail. I would have two cycles and would be in hospital for about a week each time as the chemotherapy would be given over a few days. My blood counts would drop after I was discharged and I would need transfusions. The next cycle of chemotherapy would start when my blood counts recovered, which would probably be about two to three weeks after I was discharged from hospital. There was no set schedule like there had been with ABVD (given fortnightly); it would depend how long my blood counts took to recover. The ‘salvage chemotherapy’ part of the treatment would take about 2 months, then I’d have another PET scan to assess response, then stem cell collection and transplant if the PET scan looked at least 50% better.

Take home message number 2: There are no set dates for this type of treatment, making it very difficult to plan anything and to know whether I would be in or out of hospital at any given time.

I asked when this treatment would start. She said there would be a bone marrow transplant meeting the next day at the hospital in the city, where my case would be discussed to make sure everyone agreed on the planned treatment. I could then be admitted later that week or early next week but I could delay it for a week or two if I had something special on. I mentioned the walk (The Weekend to End Women’s Cancers) I had signed up for along with a team of 29 other people, including two uncles who were flying over from Perth. That was about a month away and she advised me that it would not be wise to wait that long. I don’t think I was really considering waiting until after the walk but the prospect of not being able to walk with my team was not a pleasant one. She said the longer we waited, the more progression there would be and the more work the chemotherapy would have to do. “We are hoping for a very good result so it’s best to just get on with it!” I decided I would prefer to start treatment next week as that way I knew I had the next few days and the weekend clear and I could attend a trivia night on Friday night that had been organised by members of ‘The Good Tittie Team’.

I asked what drugs I would be having and she said the protocol was called IVAC. Low blood counts were the main side effect, along with the usual hair loss, mouth ulcers, diarrhoea etc. I would also need a Hickman line inserted which is a means of having permanent intravascular access, similar to a PICC line but  there is less risk of infection with a Hickman line and it can stay in for longer. I would need regular blood tests and transfusions after being discharged from hospital following chemotherapy and the dressing on the Hickman line would also need to be changed weekly. My neutrophil count would be zero for a while after the chemotherapy and if I got sick or had a fever I would have to go back to the hospital in the city, quickly, but fortunately the blood tests, transfusions and dressings could be done at the private hospital close to home where I had had all my previous treatment.

It was made clear to me that this treatment would completely take over my life and be a priority. “It is shit and has to be dealt with” she said. I then mentioned the trips to Bali and New Zealand that I booked on the day of my supposed last chemo infusion on 30th December last year. She said she didn’t know if I would make it and that trips in May/June might be pushing it. She said that I might be finished treatment and be out of hospital but I might not feel up to an overseas trip.

I then asked the hard question. “Will I die from Hodgkin’s?” She told me I had more than a 50% chance of going into remission with this treatment, so I should be OK in short term. She went on to explain that people often go into remission after a transplant and stay in remission for many years but there was probably a 50% chance of long term relapse, as opposed to 20% if remission had been achieved after ABVD. If I was to relapse down the track, there would a good chance of getting into remission again but not as good as now. With each relapse, the likelihood of achieving remission worsens. It wasn’t sounding great to me but as my haematologist told me on day 1 of chemo last year, “statistics are for statisticians”.

I also asked if it would have made a difference if we’d realised ABVD wasn’t working earlier and changed the chemotherapy regime to BEACOPP. She said it is possible I would have benefited from changing to BEACOPP but nobody would have done it based on my PET scan. I wonder if the German’s would have. Having very chemoresistant disease is not as good in the long term so it wouldn’t have been better if the early PET scan didn’t show such a good response and fool everyone into thinking the chemotherapy was going to work.

So was all that chemotherapy I had last year a waste of time? She said the goal was to get me in to remission and it didn’t achieve that but she didn’t want to tell me “6 months of shit chemotherapy” was a waste of time. She said that if I hadn’t had that chemotherapy I’d probably be dead by now. I’m not sure if that’s true but it’s one way of making it feel like it wasn’t a complete waste of time.

She then asked about what support I had. I would be in hospital for large blocks of time and if I got a fever or felt unwell when I was out of hospital, I would have to go straight back to the hospital in the city, even if that was in the middle of the night, so I would need someone to look after my kids at the drop of a hat, and someone to take me to hospital or call an ambulance. I think anybody reading this blog knows that I have a fairly good support network. Understatement of the century!

I asked about work and she told me I wouldn’t be able to work during this treatment. I would need at least anther 4-5 months off. She said people need at least 8 weeks off after a stem cell transplant and then usually go back to work part time initially.

The hospital I would be admitted to in the city is a public hospital. I could be admitted as a private patient but she told me that wouldn’t make any difference to my day to day care. I would be seen daily by the registrar and resident and reviewed several times a week by which ever consultant happened to be on ward service that month. I would have preferred daily review by the same consultant (of my choice) but there wasn’t much I could do about it in a public hospital.

She then felt the lymph nodes in my neck and commented that they were “piddly little things”. If only they’d caused a piddly little problem.

The consultation ended with her saying, “You’re still in with a chance so we’ll just proceed with the expectation that you’ll get into remission”. She reiterated that I needed to have things sorted out at home and needed people to be able to help in the middle of the night, at short notice, if I became unwell.

Take home message number 3: I would need A LOT of support and would be relying on people for A LOT of help during this treatment.

I know you’re wondering how on earth I remembered these consultations in such detail if they occurred 4 months ago. I’d like to say it’s because I’m brilliant but I recorded them. It’s interesting listening to them again to write this post. I walked out of the second consultation thinking that this haematologist who I had previously thought was overly positive, was not positive at all. She would not use the word cure and would only talk about achieving a “durable remission”. In hindsight, I don’t think she was being negative, she was just telling me how it is, and that’s how I like it. At the time though, I left with the feeling that if this salvage chemotherapy and stem cell transplant didn’t work, I was stuffed and I was going to die. I didn’t remember the bit about there being a 50-75% chance it would work and there being further treatment options down the line. I told a few people of my opinion about my future (that I was stuffed it this didn’t work), but nobody in the family of course. And again, I’m glad I protected them from that because I’m certain it would have sent them into a state of panic and I now know that it is not necessarily true.

After the appointments, I picked up my daughter from school and took her to her swimming lesson. On the way to swimming, she asked me how people get to heaven – gotta love the timing of that question! I can’t remember what I told her but I asked her why she had asked that question, wondering if she thought I was going to die. The reason she gave for asking is actually pretty funny. She told me that she went to the toilet at school that day and that reminded her of when she went to the toilet at home and there was a dead moth on the floor. That it turn reminded her of the dead lizard her papa had found when he and her cousins were at our place and I think they had had a conversation about heaven then. Love the way kids minds work.

I knew I had a tough few months ahead of me, but I had no idea how tough they would be. It was all a bit of a shock really and I felt like I’d gone from having a cancer that really wasn’t a huge deal (although not good) and I’d be cured with a bit of chemotherapy, to things suddenly becoming very, very serious. This so called ‘good cancer’ had turned to shit overnight. I think Lisey told me I had the fucked up version of the good cancer and that sounded about right to me. Maybe I need to change the title of this blog.

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3700 words and I’m still 4 months behind. Better keep writing.