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.

47. The real story

This is the real story; things I would have written in post number 45 if I was telling the truth, but I had to tone things down so as not to stress everybody out!

I suppose the first sign that things were not going to turn out as hoped was way back in September when I had the re-staging PET scan. You may recall that my haematologist said he expected that scan to be negative. It wasn’t negative. My haematologist was on holidays when I had that scan and the results were given to me by the caring, sympathetic, female haematologist who was covering for him. She told me the scan was almost negative and that it was a fantastic result. At the time I thought she was a bit overly positive and I was interested to know what my doctor thought about the results. I asked her if you could have a response like mine and then have progression of the disease at the end of treatment. I can still see the expression on her face. She looked at me as if to say ‘don’t be so pessimistic’ and her response was “Well yes, but it is very rare.”

When I next saw my haematologist, in his typical fashion of not letting much out, he said my PET scan results were “OK”. I left that appointment not knowing what he really thought so at my next appointment, I demanded answers. That is when he told me if that scan was negative he would have been super bolshy (confident) that all would be well at the end. Since it wasn’t negative, he was just bolshy as opposed to super bolshy. I was reassured by him but I did have some intermittent nagging thoughts that I wouldn’t be in remission at the end of chemo as I had read about people who had bulky disease (lymph node masses in their chests up to 20 cm across) who had negative PET scans after 4 rounds of chemo. I didn’t have bulky disease, yet my PET scan wasn’t negative.

I wasn’t troubled by these thoughts. I pushed on with treatment, counting down the chemo hits, counting down the number of crappy Wednesdays after chemo, hoping and planning for remission at the end.

As I approached round 12 of chemo, I just had a feeling that it wouldn’t be the end. I had no concrete evidence at that point, it was just a feeling. And that is very odd for me as I’m not the sort of person who has ‘feelings’ or makes predictions about things. If I had achieved remission, that feeling would have just been the normal doubts of a cancer patient. If I’d seen my haematologist before round 12, I would have told him that I just didn’t feel like it was the end. If me having a ‘feeling’ isn’t weird enough, this one is just outrageous. I actually felt like 6 months of chemo was too easy. Not that there was anything easy about chemo, I hated it, but for reasons I can’t explain, I just felt like it would be too easy to be rid of CANCER, that horrible disease that kills so many people, with just 6 months of chemo. Maybe that was because it did seem easy compared to what Lisey had been through; 10 months of treatment including three operations, chemotherapy and radiotherapy. I just had chemotherapy and one small operation. And I still had my boobs.

Now, in hindsight, I wonder if this feeling I had, that it wasn’t the end, is the reason I couldn’t be excited about the last hit of chemo; I said at the time I couldn’t be excited because I didn’t know if it really was the last one. I also played down any references to celebrating the end of the chemo. Several people wanted me to have a huge celebration for my birthday and the end of chemo, but I was hesitant and insisted it was just a mini celebration of my birthday and the fact I was guaranteed not to have any chemo in January.

There may have also been signs all the way through that I was misinterpreting. I had a couple of hospital admissions with fevers (which disappeared by the time I got to hospital). After those admissions, occasionally my temperature would go up a bit, but not high enough for me to call the hospital. I was focussed on neutropaenia and infection but maybe it was the proliferating (growing) lymphoma that was giving me these intermittent temperatures, because it can do that.

Being a doctor, I always had a look at the results of my blood tests before each round of chemo. I noticed my LDH and ESR were always a little bit elevated. I won’t bore you with the details of what these are; they are just two of the many tests that are done. I asked my haematologist about the LDH during one appointment and he said it was probably elevated due to cell breakdown (the chemotherapy killing cells) and it wasn’t concerning. I forgot to ask about the ESR.

I had felt a few lymph nodes in my neck but they didn’t seem to getting bigger, my haematologist wasn’t concerned about them and I wasn’t itchy.

Despite these feelings and possible signs that all was not well, I had no definite evidence that my cancer was still growing as I approached ‘the end’ of chemo and I chose to assume or hope that I would be in remission. I was happy for Lisey to throw streamers at me and blow party whistles as the last drop of chemo went in. I was happy for the chemo nurses to sing a song to me. I booked trips to New Zealand and Bali on the evening of my last chemo; I knew it was a bit risky, but I did it and convinced half of my family and a few friends to come to Bali with me. Hell, I had even signed up for a 60 km walk that I was telling everyone was 2 months after I finished chemo. Clearly at that point, I didn’t really think or know that I still had cancer.

That all changed a couple of weeks after finishing chemo. I can’t remember exactly when it was but I felt a very small lymph node on the right side of my neck. It was definitely new but it was seriously only about 1 mm  across. I wondered if that was the one the haematologist felt when he said “yeah that ones about 1 mm”. I kept an eye on that lymph node and over the next few days or weeks, I was pretty sure it was getting bigger. I was also having what felt like hot flushes and my temperature was going up a bit. I didn’t know if that was lymphoma or chemopause (chemotherapy induced menopause) but in combination with an enlarging lymph node it was somewhat  worrying.

I told a few people about my concerns, including Lisey. I didn’t tell anyone in my family as I knew that would completely stress them out and there was no point doing that because I could have been wrong. I wonder if the fact I told Lisey means I didn’t think she’d be stressed about the possibility of me still having cancer, or I didn’t care if she was stressed. I think I told her because I knew she understood cancerchondria, and I was hoping that was what I had. I probably also told a few people so that when the scan came back positive, I had proof that I really did think it would be positive and I wasn’t just being a smart arse saying “I knew that would happen”.

As the days went on and the PET scan approached, I was absolutely certain that lymph node in my neck was getting bigger so I was pretty sure the PET scan was going to be positive. I didn’t just tell my radiologist friend I was prepared for a positive result, I told him I was expecting a positive result.

So, on 28th January, I headed off for my third PET scan (and CT scan), the one that was supposed to tell me I was in remission. I had an early appointment so I was seen promptly. No need to bore you with the details because I’ve been through it all before and there was nothing special about the procedures. When I was having the CT scan, one of the radiographers said he recognised my name and asked if I worked locally. I said I didn’t but that I recognised his face. We worked out we went to the same high school.

After the CT scan, I texted my radiologist friend and told him I was all done and asked him how long it would take him to have a look. He must have called very soon after but for some reason my phone went straight to message bank. I listened to the message, just him asking me to call him but I could tell in his voice that the news was not good. Surely if it was negative he would have left a joyous message telling me so.

I had to wait to be given a copy of my CT scan films. Once I was given them, I got changed back into my clothes, went to the toilet and headed outside to my car to make the phone call. There was pain in my friends voice as he told me the scan was positive. I can’t remember the exact details and I don’t think he went into a lot of detail. It didn’t matter really, it wasn’t negative. I wasn’t in remission. I just remember him saying there was quite a bit of activity in my chest and some low down on the right side of my neck but nothing in my abdomen or anywhere else. He was very apologetic but it wasn’t his fault. He certainly did not enjoy delivering that news to me but I was very grateful he did. I wasn’t going to wait a week.

Although I was very prepared for that news and I was expecting it, it was still shit news and very unpleasant having it confirmed. I really had hoped I was the world’s biggest cancerchondriac. My immediate reaction was that I wanted to call my haematologist and change my appointment to that day so I could find out what was next. I spent the next hour or so sitting in my car sending texts and ignoring phone calls, although I did answer the phone to Lisey. I hope she feels special.

Word spread quite quickly. Jenni was gutted and promptly posted “FUCK YOU CANCER” on Facebook. That wasn’t just for me, by the way, it was also for her dear mother-in-law who was in hospital with advanced ovarian cancer. Cousin Sonya headed over to my house to be with my mum, and as she does, she brought food (lunch) and went through my fridge and pantry and made a meal with whatever ingredients she could find. She has earnt herself the nickname, Sonya ‘Ready Steady Cook’ Tomlinson, although she prefers to be known as Sonya ‘Fav Cuz’ Tomlinson.

As I drove away from the radiology place, I realised I’d left my CT scans in the toilet so I stopped and called them and yes, they found them in the toilet. They told me to come back later to get them as they were waiting for the PET scan films to be printed.

When I arrived home, Sonya and my mum greeted me in the garage as I drove in, and they shut the roller door of the garage. Then they just stood there and watched me as I gathered my things. I’m still not sure what that was all about. Perhaps Sonya will explain.

I went inside and got my daughter alone so I could tell her the results of my scan. I had told her that I was having a “big X-ray” that day which would hopefully show that all the cancer was gone. When I told her the results, her response was “I know”. To which my response, in my head, was “WTF??” My mum and Sonya hadn’t told her the results. I didn’t think she was psychic but it was just a bit weird! Then she said, “I knew that you didn’t have cancer anymore”. She had misheard me. I explained that I did still have cancer. She had a bit of a confused look on her face and said “I don’t want you to have cancer anymore”, and then she moved on to something else and was laughing. And that was it. Much like the very first time I told her I had cancer. It’s good that she’s too young to fully comprehend it.

As the day went on, I decided I wasn’t going to change my appointment with the haematologist. I knew that whatever was next for me, which I thought was most likely a stem cell transplant based on a previous discussion I’d had with my haematologist, was not going to be pleasant, so I really was in no hurry to find out. I also figured that this bastard had been happily growing away through chemotherapy for the last few months, so another week wasn’t going to make any difference.

I forgot to take my daughter to her swimming lesson that afternoon too. I guess I had other things on my mind.

I must say, one thing that I was quite pleased about, was that pretty much everyone told me that it was just plain shit that my PET scan wasn’t negative. Nobody tried to find a positive, except me (jokingly) and that was good. Clearly you’ve all been paying attention and my blog has served its purpose! Also, before the PET scan, nobody told me that they “just knew” it was going to be negative, which is good, because I find that quite annoying. Nobody knows what the result is going to be and you look a bit silly when it’s not negative and you apparently just knew it would be. I knew everybody was hoping and probably expecting it to be negative, but sadly it wasn’t.

I didn’t wallow in self pity over the next week, I just felt really pissed off. Pissed off I’d had six months of shitty chemo for no apparent reason other than to endure the side effects. Pissed off that Jenni had wasted so much time coming to nearly all of my chemo sessions with me. Pissed off that my mum had done so much to help me through treatment that didn’t work. Pissed off that I wasn’t going to be able to repay all the school mums for the help they’d given me and I’d be asking them for even more help this  year (I know they don’t for one second expect me to repay them, but I’d like to). Pissed off the re-staging PET scan was almost negative giving us all the impression the chemo was working.  It would have been better if that scan showed no response so we could have moved onto a different treatment that may have worked, rather than push on with 8 more rounds of the stuff. I could go on with my reasons for being pissed off but even I’m getting bored.

So, what to do now? I think this is all I can do to get through the next stage of my adventure.

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36. Chemotherapy – round 5

Monday 23rd September, 2013

It was the school holidays and Jenni (fav sis) wasn’t able to accompany me to chemo that day. She usually works on Tuesdays but had to work on Monday instead that week. My friend Simone knew someone who had Hodgkin’s lymphoma about 10 years ago and she had told Simone that she wished she’d taken different people to chemo with her, rather than the same person every time, so more people could see what it’s actually like to be given chemotherapy. (I actually thought it might be nice to take a different person to chemo each time so they could have the chemotherapy instead of me! But my PET scan results probably wouldn’t have been so good if I did that).

Simone was the first person I thought of when Jenni wasn’t able to be my chemo friend that day and after confirming her mum could look after her two children for the day, she accepted the job. Poor Simone definitely drew the short straw, however. It was a long day!

I met Simone about 15 years ago, maybe more, when we worked together at the good old Grand Hotel. We travelled overseas together for a few months in late 1999/early 2000 and got up to a bit of mischief. We spent New Year’s Eve on the streets of Edinburgh at “Hogmanay” which is one of the biggest New Year’s Eve events in the world and was a pretty awesome place to welcome the new millennium. We actually had more fun the next night at a little pub, chatting to some locals wearing kilts. And we found the answer to that question everyone asks – ‘do they wear underwear under their kilts?’ No, they don’t! Well at least the one we were talking to didn’t. I think I took a photo to prove it. Simone is a very caring, generous, sympathetic and empathetic person and has been a friend I have been very fortunate to have during this adventure. She put together a cancer show bag before I started chemotherapy, made me a bracelet with a ‘tree of life’ charm on it, has been to my house to cook me dinner (and drink wine), delivered many meals, and called/texted often. She was also the first one to start investigating hats and scarves.

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The bracelet Simone made for me.

Simone sells bracelets too by the way, so if you want to order one, let me know. And you can still order those stickers from http://www.myracecarsticker.com.au I am determined to get some orders for something!! I think I’m going to go for an FUC sticker, a little more subtle than F##K CANCER.

Back to the chemotherapy. Simone picked me up from home and we drove into the hospital. First stop was the chemo ward to have a blood test to see how those neutrophils were holding up. There was no visit to the haematologist prior to chemotherapy this time as my usual haematologist was still on holidays and I had seen the covering haematologist on Thursday for the results of that PET scan. Simone had been instructed by Jenni to make sure a hot lunch was ordered for me and she completed that task with stealthy efficiency.

That day was a very special day as it was Karine’s (my chemo buddy) last chemotherapy. I was definitely jealous, but very happy for her. I wasn’t seated next to Karine and that was not going to be acceptable for her last session.

That day was also the day I had a PICC line inserted so after the blood test, the next stop was the radiology department next door. I have mentioned in a previous post that PICC stands for Peripherally Inserted Central Catheter so it is basically a catheter that is inserted into a peripheral  blood vessel (i.e. a blood vessel in a limb) and fed up to a central vessel (i.e. a large vessel near the heart). The advantage of a PICC line is that it can be left in for several months. It can be used to deliver things (i.e. chemotherapy) and also to take blood for blood tests, therefore preventing the need for multiple stabs. Also, the delivery of chemotherapy to a large, central vein would save my poor peripheral veins from further trauma and sclerosis.

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This illustrates where a PICC line is inserted and the tip in a large vessel near the heart.

I first met the nurse who would be assisting the radiologist who would be inserting the PICC line. She was lovely. Simone told her I was doing a blog and I wanted some photos of the PICC line going in but she was a little uneasy about that. I also thought it probably wasn’t wise to have someone photographing the procedure. We didn’t want to make him nervous and have him pierce a big central vessel or my heart! So we settled for a few photos of me lying on the table ready for the PICC line to go in. The nurse asked me which arm I’d like it in and I chose my left arm since that was the arm that already had all the stuffed veins. Might as well keep the right arm good.

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Ready for the PICC line.

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The radiologist came in and introduced himself. Also lovely. He was the husband of a work colleague so we chatted about my work and also about my radiologist friend, who I assume had lined him up to perform this procedure. He explained what the procedure would involve; injection of local anaesthetic which would be the worst part, a small incision, insertion of the catheter, threading it up to a large vessel near the heart and confirming its position radiographically. The local anaesthetic was inserted and all of a sudden I felt a hand rubbing my right shoulder. It was the nurse. Although it wasn’t really necessary, I did think it was such a nice thing to do. The local anaesthetic did sting but it was nothing compared to a bone marrow biopsy!

The radiologist made the incision and inserted the catheter. He made a comment about me having royal blood because it was very blue. Perhaps I really am a princess! The catheter was threaded up the vein and the correct position of the tip was confirmed. A dressing was applied and that was it. It was all over with pretty quickly.

I returned to the chemo ward ready for the chemo to be delivered through my new PICC line. I was happy to find that I had been moved and was now next to Karine, so we could chat all day during her last chemo session.

My blood test results were back and I was informed that my neutrophils were 0.3. Wow! That was an all time low. Still, I wasn’t concerned because I was ‘well’ so I would be having my chemotherapy. The nurse who was looking after me said she’d have to check with the haematologist before hooking me up to chemo. I understood that but I was a little nervous as my haematologist was still on leave. I knew he would not bat an eyelid and tell them to give me the chemo but the woman who was covering him (you know the one who looked me in the eye and asked “how are you?” and who was so very positive about my PET scan results) was nice! I was just hoping she was only nice to people and not to cancer and would tell the nurses to give me my chemotherapy!

The head nurse came over and told me I wouldn’t be having chemotherapy with neutrophils of 0.3. I told her I’d had chemo with neutrophils of 0.5 and 0.3 wasn’t that much lower than 0.5. She said 0.3 was very low and my chemo would be delayed for a week at that level. No chance! I had the rest of the year mapped out in terms of bad weeks (chemo weeks) and good weeks (non-chemo weeks) so throwing that out by a week would mean I would be having chemotherapy on the Monday before xmas and xmas day, being a Wednesday, would be a write off. It would also mean that the treatment for this cancer would extend into 2014. That was not going to happen. 2014 was going to be a good year.

The nurse who was looking after me came back and told me they were still waiting for the covering haematologist to call back. I was happy to wait. About 10 minutes later, the nurse said the haematologist hadn’t called back so they had spoken to another doctor who sometimes covers my doctor when he he’s away, and he said I should have an injection of neulasta (a drug that makes the bone marrow produce more neutrophils) and come back on Wednesday for another blood test to see if my neutrophil level had improved. I wasn’t happy with that so I told the nurse I wanted to wait for the female haematologist to call back to see what she said.

My haematologist would be back at work the next morning at 8 am so I had already decided I would be calling him at 8:01 am to get him to instruct the nurses to give me chemotherapy on Tuesday if it wasn’t going ahead today. Fortunately the female haematologist called back and told the nurses to give me chemotherapy. She also explained to them the importance of not having delays in chemotherapy in the treatment of Hodgkin’s lymphoma. I would also be earning an injection of bone pain causing Neulasta this time. The nurses apologised but I was not angry with them. I understood their concern about giving me chemotherapy with such a low neutrophil count, but I also knew I should be having chemotherapy that day.

When re-telling this story to an old colleague recently, we laughed that I was possibly becoming a drug addict. Nothing was getting in the way of me having my drugs that day. It’s a little odd, because these drugs make me feel like crap and I wish I didn’t have to have them but I do not want to prolong this adventure by a single day.

So, I was hooked up to chemo through my new PICC line and despite a very late start, it all went smoothly.  Jenni came to visit on her way to work to wish Karine well on her last chemotherapy, (and to check that Simone had ordered my hot lunch). I am so glad I met Karine, although in a way I wish I’d never met her as both of us having cancer is the reason we met. The chemotherapy sessions were almost fun with Karine there. She was a breath of fresh air and made Jenni and myself laugh often with her honesty and sense of humour. We met her mum, her friends and her husband, as she had a different ‘chemo friend’ each time, and we learnt a lot about her through the stories she told us. Karine is also participating in the weekend to end women’s cancers but unfortunately she is not a member of ‘The Good Tittie Team’. I guess we’re all on the same team really, raising money for the same cause.  I wish Karine all the very best in her life after cancer. It won’t be the same but she’s a strong, happy person and she will be fine. We’re Facebook friends now and I think we can call ourselves real friends too. I am sure we will keep in touch.

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Karine and I in our gold class chairs, in the naughty corner, hooked up to chemo, for the very last time for Karine.

Simone and I didn’t leave until nearly 5 pm which is the latest finish I have had. It was a long day but it was another chemo down. Seven to go.

 

34. The second PET scan

Thursday 19th September, 2013

The day had finally arrived when I would find out if the chemotherapy was having any effect on my cancer. It was the day of the follow-up PET scan. If you need to refresh your memory on what a PET scan is, click here to read about my first PET scan. It was only a few days before this second PET scan that I started writing this blog, so many people were aware I had strong opinions on inappropriate things to say with someone with cancer. As a result, I don’t think  anybody really knew what to say as they were worried about saying something inappropriate. That actually suited me fine. I was happy for people to say nothing. What can you say? Good luck – not really appropriate because luck has nothing to do with it and it’s not an exam or a job interview. It is something you have no control over. Some people just said they were thinking of me and hoped the results were good. That was appropriate. I don’t recall if anybody even said this but I would suggest you don’t say “I just know the results will be good” because actually, you don’t know and then what are you going to say if they’re not good? And don’t ask “Are you nervous?”

I dropped my daughter at school and headed straight to the radiology centre for my 9:15 am appointment. I was feeling a bit emotional that day. At the time, I didn’t think it had anything to do with cancer and the anticipation of finding out what the scan showed. It was about other things going on in my life at the time, but looking back maybe the cancer stuff was a factor. I went up to the desk and was told to take a seat, and I waited and waited and waited. I think I waited close to an hour which I know is not long if you’re in the public health system, but in the private system with probably the first appointment of the day it was a long time and it pissed me off a bit. The scanning was going to take a couple of hours as it was.

Finally my name was called and I was escorted into a small room where I was given some oral contrast to drink (for the CT scan) and two radiographers fussed around, neither of them wanting to be the one to have to put an intravenous cannula in a doctor! I gave the lucky candidate the good arm and she went for a nice juicy vein in my cubital fossa (front of the elbow) and much to her relief, the first attempt was successful. She was however, a bit embarrassed about all the blood that spilled all over the floor.

I was then taken into the room with the iron walls where I was expecting to see the ancient looking, big metal machine in the corner, which I was planning to take a photo of, but it wasn’t there. Had I imagined it last time? The radioactive glucose was simply injected from a small syringe and I was left to radioactivate. The radiographer said she would be back in 50 minutes. There was no radio with fuzzy reception this time. Just me and silence. I don’t know how long I was left there for but when the radiographer returned, she apologised for leaving me so long.

I was taken into the PET scanning room. I didn’t have to get changed into a gown this time. I was just asked to remove my bra and when I was lying on the thin table I was covered with a blanket and pulled my pants down to around my knees. The scan was much the same as last time. I had to lie very still with my arms by my side and I was very, very slowly passed through the donut. When that was done, I was expecting another scan with my arms above my head but I was told I was done and could get off the table. I asked about the second scan and they said it wasn’t needed and they only usually do that with the first staging PET scan. Were they telling the truth? Or did they not need to do it because this PET scan still showed cancer everywhere so it wasn’t really important exactly where it was? Or was it showing no cancer so they knew the scan with my ams above my head would be pointless? I was thinking too much.

I was then asked to drink another cup of oral contrast prior to the CT scan. Since there was no ancient looking metal machine in the room with the iron walls, or anything else remotely interesting enough to take a photo of for my blog, I took a photo of the cup of oral contrast. Very interesting! And Lisey, the private oral contrast doesn’t taste like aniseed. I’m not entirely sure what flavour it was, but it wasn’t aniseed.

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The cup of oral contrast.

The CT scan was quite uneventful. This time I did have to put my arms above my head, so I had two injections of intravenous contrast (and hence felt like I wet myself twice), one for the scan with my arms by my side, and one for the scan with my arms above my head. The CT scans are much quicker than the PET scan so that part was over with quite quickly.

The radiographer told me to go to the front desk to sort out payment and then to wait and he would give me a copy of the CT scan films to take. I told him I didn’t need the films. I actually didn’t want the films because I didn’t want to be tempted to look at them and misinterpret them. He told me my haematologist always wants his own hard copy of the films. I thought that was odd because I hadn’t taken a hard copy after my first CT scan back in July, but then it occurred to me that that CT scan had been requested by my GP, not my haematologist.

So, I took the films and headed out to the car. I tried not to look but I couldn’t stop myself. I pulled out one of the several sheets in the envelope and it just happened to be scans of my neck, where most of my enlarged lymph nodes were in the beginning. It looked to me like there were a lot of prominent lymph nodes which had taken up contrast. Shit! I told myself not to be stupid, and to wait, and I didn’t look at any more films. It was only a matter of hours until I would see the haematologist.

7. Second date with the haematologist

Tuesday 16th July, 2013

I was pretty calm over the weekend, although my phone was running hot as I had allowed people to spread the word now that the diagnosis was confirmed, albeit unofficially.  I was laughing at little things, like when on Friday after receiving the phone call to confirm that I had Hodgkin’s lymphoma, I went to the supermarket and the check-out boy asked me how my day was.  I was so tempted to tell him the truth but I just smiled and said it was good.

The inappropriate comments were coming in thick and fast, but Lisey had warned me that would happen, so I mostly laughed at them and we compared notes.  They were mostly comments from people trying to say something positive, and the ‘good cancer’ comment was by far the most popular.  I think I’ve already made it clear that these comments aren’t helpful so I won’t go on.  I suggested to Lisey that we should write a book called ‘Things not to say to someone who has cancer’ but she told me it had already been done (check it out here).  I still think we could do it better.

My appointment with Dr Matter of Fact was at 4 pm on Tuesday 16th July.  I dropped my son at my mum’s house and arranged for one of the school mums to pick my daughter up from school as I really didn’t want to take children to the appointment with me.  I entered my doctor’s room and sat down.  He didn’t even tell me I had nodular sclerosing Hodgkin’s lymphoma.  Clearly he knew that the pathologist who had organised her own lymph node biopsy already had the results. He just said something along the lines of there being no surprises and that he knew that’s what it would be so who needs pathologists?  It wasn’t inappropriate, it was humorous.

Now that we knew for sure we were dealing with Hodgkin’s lymphoma, there were a few extra tests that needed to be done to complete the staging.  This refers to tests that are done to determine how advanced, or what stage my lymphoma was; 1, 2, 3 or 4. I’d had a CT scan which suggested I was stage 2, but I needed a PET scan and a bone marrow biopsy (damn!) to see if there was any lymphoma lurking in places that hadn’t shown up on the CT scan.  A PET scan is similar to a CT scan but a lot more sensitive.  You are injected with radioactive glucose which is taken up by metabolically active cells (cancer cells!) and these light up when you are scanned (I’ll explain this more in a later post).  A bone marrow biopsy is basically where you have a bit of bone drilled out of your hip to see if the lymphoma is in your bone marrow.  He said you could argue whether the bone marrow biopsy was really necessary but that we should do it.  As a doctor, I understood it was needed for staging but as a patient I did not want it.  He told me it wouldn’t be that bad so I asked him if he’d ever had one.  He said that he had, several in fact.  OK, then he was allowed to tell me it wouldn’t be that bad.

We then discussed the treatment which would involve 6 cycles of fortnightly chemotherapy.  The regime is called ABVD; one letter for each of the drugs I would be given – Adriamycin, Bleomycin, Vinblastine, Dacarbazine.  He talked about a different regime, BEACOPP, which the German’s like but that doesn’t seem to get much of a guernsey as first line treatment in Australia.  I think he said it has a higher success rate but more long term complications.  So back to my chemotherapy, 6 cycles of ABVD.  You would be forgiven for thinking that 6 cycles of chemotherapy means 6 sessions of chemotherapy.  Not so.  For Hodgkin’s lymphoma, 1 cycle of chemotherapy is 28 days long and involves two infusions of exactly the same drugs given two weeks apart, on day 1 and day 15.  So, I was having 12 sessions of chemotherapy.  He didn’t try to sugar coat it, being Dr Matter of Fact.  He just said 6 cycles of chemotherapy which for you means 12 treatments.  6 months of chemotherapy.  Why not call it what it is?  12 stinking cycles of chemotherapy (can you tell I’ve written this post after I’ve already had some chemo?). Clearly it’s psychological.  6 cycles of chemotherapy sounds a hell of a lot better than 12.

He discussed some of the side effects.  I would lose my hair, I’d have a weakened immune system, my periods might stop, I might have a bit of fatigue but nausea wouldn’t be too much of a problem.  It was sounding like a bit of a walk in the park.  I asked him about going back to work and his response was “suck it and see”.  Honestly, that is what he said.  He said some people curl up in a ball and can’t cope with anything else and other people go back to work and work twice the hours they were working before they started chemotherapy.  I thought I’d be somewhere in the middle.  He said I should try to keep life as normal as possible, so it would be good to go to work, perhaps part-time, so I wasn’t sitting at home twiddling my thumbs thinking about all the long term complications.  Yep.  Two young children.  So much thumb twiddling time available!  Surely only a man would say that.  And speaking of the long term complications of the good cancer, there are many.  There is a risk of secondary malignancies (cancers) like leukaemia, heart damage, lung damage.  The list goes on.  Radiotherapy adds further risks but I probably wouldn’t be having that.

He was very positive in a matter of fact kind of way.  There was no sympathy whatsoever.  He was telling me how it was.  I liked him.  He told me that based on the findings of the CT scan which indicated I was stage 2 and had small volume disease (as opposed to bulky disease where there are lymph node masses greater than 10 cm in diameter), I was young (apparently) and fit and had no other adverse features (these are things like anaemia, low albumin and other things found on blood tests), I had a 95% chance of being cured.  Thinking back, he probably didn’t say cured because that is not a word that is thrown around freely in the cancer world.  He probably said there was a 95% chance of treatment being successful.  That means no signs of cancer, or remission, at the end of treatment. Then there is the risk of the lymphoma coming back.  The risk of that is highest in the first two years.  He told me I would have another PET scan after 2 cycles (4 sessions) of chemotherapy to assess the response and then another PET scan at the end of treatment.

I had mentioned at our first meeting that I had a conference in Queensland in August and a family holiday booked to Bali in September.  He said Queensland would probably be OK but he would advise that I didn’t go to Bali as it is not the sort of place I would want to be with a weakened immune system.  Chemotherapy wipes out your white blood cells which are cells that fight infection.  So I would be at risk of getting sick and if I got sick he didn’t think Bali hospitals would be a good place to go.  I wasn’t convinced it was so risky and at that stage still thought I’d be going to Bali, maybe for one week instead of two.  With regard to the weakened immune system, he said I would be having a blood test before each chemotherapy session to check, among other things, my white cell count (mostly interested in the neutrophils which are one type of white cell).  Sometimes chemotherapy is delayed if the neutrophil count is too low but he said with Hodgkin’s they usually push on with treatment regardless of the neutrophil count, as long as the patient is ‘well’ and this pushing on is apparently one of the reasons the treatment is so successful.  He also said because the success rate is so good, the focus is on doing as little treatment as possible to reduce the long term side effects.  No point ‘curing’ 100% of patients and then have them dropping dead from leukaemia a few years later.

The bone marrow biopsy would be done on Wednesday of the following week, 24th July.  I asked if he’d be doing it but he said he’d done his 2000 so someone else would be doing it.  His initial plan was for me to start chemotherapy straight after the bone marrow biopsy.  Although I was keen to get treatment underway, I asked if I could have chemotherapy on Mondays instead and he said that was fine, so Monday 29th July it was.  As it turns out, that was a very wise request by me.

That was pretty much all there was to it.  Once again, he managed to make me feel like I just had a cold.  I know we’d just talked about cancer and 6 months of chemotherapy and having bone drilled out of my hip and long term complications and recurrence, but I wasn’t feeling like a cancer patient.  I went out to the reception desk and they informed me I would get a phone call with an appointment time for the PET scan.  I headed out to text the many people who were waiting to hear what happened.  His receptionist then called out for me to come back and my haematologist gave me a prescription for allopurinol and told me I also needed to take Ural and gave me instructions on when to start.  He didn’t tell me what it was for but I knew.  It was to prevent what is known as ‘tumour lysis syndrome’.  This is a syndrome you can get when you start chemotherapy and is due to the breakdown of large numbers of cancer cells.  It usually occurs when there is a big tumour load or a lot of cancer.  I apparently had small volume disease and now he’s giving me drugs to prevent tumour lysis syndrome.  Is there something he’s not telling me?  I decided not to dwell on it.  He wasn’t really one to hide anything.

I headed outside and sent the following group text.  “Hello well wishers. Have seen haematologist who is a lot like me and not overly sympathetic.  I am strangely very calm.  The plan is PET scan and bone marrow biopsy (ouch!) next week then start chemo for 6 months (every fortnight) on Monday 29th July.  Will have another PET scan after a few months to assess response.  He says I have a 95% chance of being cured.  Doesn’t mean I won’t be in the 5% but the odds are good.”  I then got a flurry of texts back and I appreciated every one of them.

I picked up my son from my mum’s house and my daughter from her friend’s house where I was presented with lasagna for dinner.  Thanks Andy!  I then drove home, quite pleased that there was a clear plan of action in place.

Oh, I almost forgot my haematologists parting words.  “It could be worse.”  I agreed with that.  It wasn’t good but I was well aware it could be worse.  My lymphoma could have been more advanced, it could have been a different, widely disseminated cancer with no hope of a cure.  I could have died in a terrible accident so nobody even had any warning that I was going to die.  Yes, it could have been a lot worse.  But it could have been a lot better too.  It could have been nits!

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Thank you Jenni (fav sis as she calls herself) for supplying this very fitting quote.

5. Diagnosis confirmed

On Friday 12th July, I got the unofficial confirmation of the diagnosis.  A fairly rapid turn around having first presented to my GP only four days earlier.  The report hadn’t been typed but Saurabh had spoken to the pathologist who was reporting it.  Saurabh called me and told me I had nodular sclerosing Hodgkin’s lymphoma.  It was probably a harder phone call for him than it was for me.  It can’t be nice telling a friend they have cancer but it was exactly what I was expecting so there was no feeling of shock that came with this news.  It was more a feeling of ‘right, now we can get on with things’.  There are several types of Hodgkin’s lymphoma.  I won’t bore you with the details but basically the type depends on what it looks like under the microscope.  Nodular sclerosing is the most common type and I was actually relieved I had that.  I’d been having these irrational thoughts that cancer patients have.  Hodgkin’s lymphoma is a pretty rare cancer.  According to the Cancer Council Australia website, about 1 in 500 people will be diagnosed with it by the age of 85.  Compare that to breast cancer, 1 in 8, or bowel cancer, 1 in 10 for men and 1 in 15 for women and you get the idea.  I decided that since I had a rare profession (there’s only about 40 forensic pathologists in Australia) and a rare cancer, I would get the rare subtype with the rare outcome……death.  I was therefore happy (well as happy as you can be with a cancer diagnosis) with the most common type.  I sent a few texts to people letting them know that the diagnosis was confirmed.  Next week, I would find out what joys were in store for me in the months ahead.  I had an appointment with the haematologist on Tuesday 16th July.  I knew a bone marrow biopsy was a distinct possibility for staging but I really hoped that wouldn’t be necessary.

For anyone who’s interested, which is probably a grand total of none of you, this is what nodular sclerosing Hodgkin’s lymphoma looks like under the microscope.

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And this is what a normal lymph node should look like.

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I know what you’re all thinking (except for the pathologists)……..they look the same!  Well, just goes to show you how clever pathologists are doesn’t it?

2. I hope it’s lymphoma

Monday 8th July, 2013 (Sorry, this one is long).

Just a couple of things before I start.  Firstly, did you notice how I wrote FaceBook with a capital B in book in the previous post?  Clearly I have no idea!  I now know it’s Facebook, but I still haven’t joined.  The pressure is mounting!  Secondly, thank you Lisa for hacking into my blog (well it’s not really hacking if I gave her my password and asked her to do it) to fix up a few settings to make it easier for everyone to sign up.  And thirdly, thank you everyone for your comments and support.  Quite tear jerking!

OK, onto I hope it’s lymphoma……..

It’s certainly not something you ever think you’ll hope for but it’s what I was hoping for, as I knew the alternative was worse.  The signs of cancer started about two months earlier; only I didn’t recognize them then.  It started as an intensely itchy scalp.  I remember saying to my daughter one night, “Have you got nits? My head is so itchy!”  She told me her head wasn’t itchy and I didn’t think much of it.  Then, a few nights later, while drying her hair after a bath, I saw some nits!  A late night visit to the chemist for nit treatment products followed by treating her and then myself.  It’s not easy to treat yourself for nits and I probably did a really crappy job.  But it didn’t matter, because I didn’t have nits.  For days after the treatment my scalp remained itchy and I was becoming a bit self-conscious about how much I was scratching it.  I considered re-treating myself but multiple people checked my head and reassured me that I didn’t have nits.  Why was I so itchy then?  The itch then moved down around my neck and upper chest, at the level of the end of my hair.  Maybe I was still itchy because I was having an allergic reaction to the nit treatment products.  That seemed plausible to me but Dr Google didn’t agree.  I couldn’t find any reports of that.  Then the itch became a bit more generalised.  Was it a reaction to new washing liquid?  I’d been using Dynamo and had recently bought Cold Power.  That made sense too so I put all the Cold Power away in a cupboard and went back to the Dynamo.  Still itchy.  My husband suggested that maybe it was fiberglass fragments from his clothes, which would have been deposited there at work and perhaps got onto my clothes in the washing machine.  So many any plausible explanations but they were all wrong.  The itch improved a bit.  It was still there but it wasn’t too annoying so I just ignored it hoping it would go away, but it didn’t.

On Saturday night, 6th July, my husband had taken our daughter to the MCG to watch a Geelong game.  While they were living it up in the MCC, I was sitting on the couch at home watching the game on TV.  I scratched my itchy neck and that’s when I discovered it.  I felt some lumps in my neck and above my right collarbone.  I knew they were lymph nodes and I knew they were enlarged.  The biggest one was on the right side of my neck just past the midline.  It didn’t move when I swallowed so I knew it wasn’t my thyroid gland.  That was a consideration, as I knew I had a nodule in the right lobe of my thyroid.  It had been identified on a CT scan in 2008 when I was admitted to hospital with pneumonia after an exam.  I hadn’t done anything about that nodule.  Was it actually cancer and had now spread to all the lymph nodes in my neck?  Interestingly, this largest node seemed to be in exactly the same place where I’d felt something about 10 years earlier, when as an oncology resident, I thought I had lymphoma.  My registrar reassured me that I didn’t.

I had always had slightly enlarged lymph nodes in my neck, probably about the size of a pea.  Now I could feel bigger lymph nodes.  You can get enlarged lymph node in your neck for all sorts of reasons, most commonly an infection, but I knew the lymph nodes above my collarbone were not a good sign. I can’t remember now if I extracted the information from some deep recess in my memory or if it was Dr Google, but I became aware of the association of itchiness and lymphadenopathy (that’s doctor speak for enlarged lymph nodes) in lymphoma, most commonly Hodgkin’s lymphoma.  I felt under my arms and in my groin – no lymph nodes there.   I was pretty certain it was lymphoma but at that point decided I would keep it to myself.  No need to worry anybody else.  I’d just observe the lymph nodes for a while and see if they changed.  That lasted just over one day.

On Monday morning, I woke up early and showered with the intention of going to work.  Whilst in the shower, I decided that was ridiculous and I needed to find out if I had cancer or not.  I got back into bed and told my husband about the lumps I’d felt.  I asked him a question, which I’m sure he thought was very odd.   “Do they feel like hard concrete or firm rubber?”  He thought about it for a while and said, “firm rubber”.  When I felt them, which I had multiple times, sometimes I thought firm rubber and other times hard concrete.  I was glad he thought firm rubber because that meant lymphoma as opposed to a solid cancer (like metastatic thyroid cancer or breast cancer or melanoma).  Lymphoma was the better alternative, but not a good cancer!!.  I sent a text message to the nurses at work letting them know I wouldn’t be in that day as I just had a few lumps in my neck I needed to get checked out.  They said they were sure it would be nothing.  I was sure it would be something but I didn’t tell them that.

I rang My GP’s surgery to make an appointment to see him.  I was given an appointment for 3 pm that afternoon but asked them to ring me if they had any cancellations and I would come in earlier. Not long after I received a call to let me know there had been a cancellation at 9:30 am so off I went to see him.  I really like my GP.  I think good GP’s are hard to find so I was very happy when I found this one, almost by default, as did my sister, but that’s another story.  When I entered the room I was clearly stressed and thinking the worst (well, thinking what turned out to be reality).  I am sure my GP thought I was a typical over-reacting, self-diagnosing doctor at first but once I told him about my lymph nodes and the itch and he felt my neck, it was obvious he agreed with me.  He said it definitely warranted investigation with blood tests and a CT scan and if we were entertaining a diagnosis of lymphoma we might as well do a CT scan of the chest at the same time.  Usually a patient would be given a request for a CT scan and would ring up themselves to make an appointment but my GP made the phone call and asked for an “urgent” CT scan.  They told him I should come in straight away.  He gave me the request slip and I noticed that he had requested a CT scan of the neck, chest, abdomen and pelvis (not just neck and chest as he had said to me). He also gave me a certificate for a week off work.  Clearly, he thought it was lymphoma.  It is hard for a doctor to hide what they are thinking from another doctor.

I had the blood tests and then headed straight to the imaging place for the CT scan.  I quickly checked the names of the reporting radiologists for the day and texted a colleague and friend of mine who works in both clinical and post mortem radiology, to ask him if these radiologists were any good and could be trusted reporting my CT scan!  He said they were.  My friend is an excellent and well-respected radiologist (just ask him! kidding, kidding) so I value his opinion.  The CT scan involved drinking some oral contrast, getting changed into a gown that doesn’t cover much, having an intravenous cannula inserted for injection of intravenous contrast and lying on a table to be passed through a donut with arms up, arms down, holding my breath, breathing out etc.  I had not one, but two injections of intravenous contrast so I got to experience that warm feeling of wetting myself twice, which anyone who has a CT scan with intravenous contrast would know well.  By the way, for those who haven’t had such a scan, I did not wet myself; the contrast just makes you feel like you have.  There was a screen in the room which had a CT image on it.  Of course I looked and I reckon I saw a few golf balls in my neck.   After the scan, the cannula was removed and I got changed back into my clothes.  I felt something wet running down my arm and onto the gown….blood.  Hmmm, had the lymphoma infiltrated my bone marrow so I had no platelets and my blood wasn’t clotting? Probably not, but the thought crossed my mind.

Some time after I got home, my radiologist friend texted me with the phone number of the radiologist who would be reporting my scan and told me to call him.  I felt a bit uneasy about that as I didn’t think he would want to give me what was probably bad news but I was told he was expecting my call so I called him.  He said he hadn’t looked at my scan yet and asked if I wanted to come in and look at it with him.  It reminded me of when my obstetrician asked me if I wanted him to get a mirror after he’d put a few stitches in after childbirth.  No thanks!  Would anybody say yes to that?  I told the radiologist I didn’t want to come in but he could just call me back after he’d had a look.  He didn’t call me back but I did get a call shortly after from the receptionist at my GP surgery asking me to come in as soon as possible.  We are taught in medical school to deliver bad news face to face so I knew what it meant.  I wouldn’t have minded if my GP told me over the phone, as it didn’t really seem like it would be a delivery of devastatingly unexpected bad news to me.  It was just confirming what I already knew.  I was pretty certain it was lymphoma but while I was in the waiting room the thought did cross my mind that it could be another cancer and I could be riddled with it and find out I had months to live.  My GP called me in and told me the radiologist had called him with the results and didn’t feel comfortable calling me back to tell me.  I understood and respected that.  The CT scan showed enlarged lymph nodes in my neck and mediastinum (that’s the central part of the chest) and the findings were highly suspicious of lymphoma.  I was OK with that and commented that it was better than the alternative (but not good!).  I do recall however, being a bit surprised by the lymph nodes in the chest.  You can’t feel them so I guess I just hadn’t considered they could be involved too.  The CT scan didn’t show any enlarged lymph nodes below the diaphragm, which is important in the staging of lymphoma.  More about that later.

The next step was to confirm the diagnosis, which is where pathologists come in.  A tissue sample needs to be sent to a pathologist to look at under a microscope so they can diagnose the disease.  The radiologist had told my GP that the lymph nodes in my neck would be amenable to core biopsy.  This involves sticking a fairly large needle into a lymph node to get a core of tissue, which is then sent to a pathologist.  I politely told my GP that would be a waste of time as to diagnose lymphoma, you really need to remove a whole lymph node.  I wasn’t being a smart arse, I know that because I’m a pathologist.  We then decided that the best course of action would be to refer me to a haematologist who could then decide how to proceed with confirming my diagnosis.  Again, my GP made the call for me and told the receptionist he needed an “urgent” appointment for me.   The appointment was made for 3 pm the next day.

I went home and went to bed.  I didn’t want to talk to anyone.  I just needed to get my head around the fact that I had cancer (although not confirmed) at 38 years of age (which I would later hear was a good age to get cancer!).  I let work know I wouldn’t be in for the rest of the week and I sent an email to my dear friend Lisa, just to make sure she went through the same stage!  From what I had seen she had handled her diagnosis and treatment with unbelievable strength and courage – just read her blog!  You can do that here, if you haven’t already.  I left it to my husband to tell my family that I probably had cancer.  That can’t have been fun for anyone but I certainly didn’t want to do it.  I told him to make it clear that I didn’t want any visitors, phone calls or text messages and they respected that.  I think I sent them a few texts later in the evening to reassure them that I was OK.  I quickly learnt that reassuring other people is a big part of a cancer diagnosis.  My mother in law had our kids for the day as it was school holidays and my husband and I were both supposedly going to work that day.  We had dropped them to her place the night before for a sleep over and she dropped them back late that afternoon.  I didn’t talk to her either.  I was hiding from the world.

An interesting aside in this whole thing is the fact that I organized life insurance just five days earlier.  Life insurance is something I knew I should have but just had not got around to organizing.  I often joked with my husband was that my life insurance was not having life insurance as if I had it, he might knock me off to claim the payout!  About a week or two earlier I had been sent information about a life insurance policy.  It had been sitting on the desk at home next to the computer so I could sign up when I got around to it.  On Wednesday 3rd July, my one year old son was in the playroom with his eight year old cousin.  I was in the kitchen helping my daughter with something.  I heard a noise, which I thought was cutlery from the toy kitchen dropping on the floor as my son is always playing with it.  Then I heard him scream.  I ran in to the playroom to find him lying on his back with his head through a smashed window and great big shards of glass pointing at his face and neck.  I had to maneuver him out so he didn’t get slashed on the glass.  He came out of it with a few little scratched but that little incident made me realize how easily accidents can happen.  As soon as he went to sleep I arranged life insurance.  There was an option for serious illness cover so you can get a payout if you are diagnosed with a serious illness, like cancer.  I didn’t think I needed that.  I was just getting cover so my family could be looked after if I died in a car accident or something.  Don’t I wish I’d got that serious illness cover now?   I am strangely comforted by the fact I have organized life insurance.  It probably means I (or my family) won’t use it.  You only need insurance when you don’t have it.  Or was it a sign from above?  My son’s head went through that window for a reason; to make me organise life insurance and ensure my family would be looked after financially when I died.  Since I don’t believe in that crap, I’m going with the former.

My son's head was through that hole in the window.

My son’s head was through the hole in that window.
A sign from above or just an accident?