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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41. Chemotherapy – round 8…..ho hum

Monday 4th November to Sunday 17th November

It’s all getting a bit boring really. A bit of chemo, a few days in bed. Nothing particularly interesting happened this fortnight…or maybe it did and I just can’t remember it. The chemo brain is quite bad now.

Chemo number 8 took place on the day before Melbourne Cup Day. Like many people, my haematologist had a day off so there was no pre-chemo appointment with him and no hard questions to be asked.

Jenni had to work that day so Joanne stepped in as my chemo buddy. She is definitely putting in the hard yards for that favourite sister status. The results of my blood test took ages to come through so there was quite a delay before chemo actually started. My neutrophil count was fine thanks to the G-CSF injection so there was no need to consult with any doctors before hooking me up. Once it started, it was pleasantly eventful. I was informed that renovations would be commencing in the chemo ward in a couple of weeks and go through until just before xmas. The area was quite cramped so anything that would give the staff more room to move without trolleys crashing would be good. If they finished the renovations on time, I would have the pleasure of receiving my last chemotherapy infusion in the newly refurbished ward.

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My chemo buddy for the day. I’m getting quite good at these selfies.

I started feeling tired while I was having chemotherapy and I may have even had a little nap. When I got home, I pretty much went straight to bed and again spent the next three days in bed. The chemo definitely seemed to be hitting me harder in terms of the fatigue but I had been told to expect that.

Apart from exhaustion and the feeling that I really couldn’t be bothered doing anything (which is probably exhaustion), there were no other significant ill effects. I didn’t have bone pain from the G-CSF this time which was good. The nausea seemed to be lasting a bit longer each time so I was popping the anti-emetic tablets more frequently. There was no vomiting; that pleasure was bestowed upon my daughter this time.

She came into my bed on Tuesday night and said she had a sore tummy. Shortly after she said she was going to be sick so I ran to get a bucket, hoping she’d hold it in until I got back. She didn’t hold it in but she got out of bed and took herself to the bathroom and vomited in the sink. I was so proud of her! I really expected vomit all over the bed. Perhaps I should have taken her to the bathroom myself and not worried about the bucket, but as I said, the brain isn’t working too well now. My mum was there and offered to take my daughter in to bed with her so I didn’t get sick too. I wasn’t trying to be a hero but I figured that I was going to feel like crap the next day anyway and I needed my mum healthy to look after the 20 month old ball of energy. If she got sick, I’d have to call in more back up. So I took my chances.

The vomiting continued all night, pretty much on the hour. Nine times in total but who was counting? At 7am I did a quick google search on zofran wafers and found out it’s OK to give them to kids, so I popped one on her tongue and there was no further vomiting. Wish I’d thought of that earlier! Zofran is a strong anti-emetic (anti-vomit) drug commonly used to treat nausea and vomiting after chemotherapy. The beauty of the wafers is that they just dissolve on your tongue so they work quickly and are perfect for kids. I am also happy to report that with frequent hand washing and extreme care, I actually managed to avoid getting gastro myself. Very surprised but very relieved.

I came out of the exhausted phase by Friday, and by that I mean I made it from the bed to the couch. The ‘good’ week was spent madly blogging, fundraising and recruiting new members to ‘The Good Tittie Team’. Jenni and I had a meeting with our uniform supplier to discuss what options were available. It was a long but productive meeting. Girls discussing colours is never going to be quick.

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The team uniform meeting. Yes, another selfie!

Since there is not much else to talk about, I will give you a quick update on the current status of ‘The Good Tittie Team’. The team was formed 6 weeks ago and started with two members. We now have 29 members and have raised almost $32,000. Eight members have raised over $2000 and have therefore officially qualified to walk. That leaves 21 members who are yet to qualify and it’s definitely not too late to donate!

Our fundraising efforts saw us race up to third top fundraising team, but we have now slipped down to fifth. We have three members in the top 100 fundraisers too. I did get up to 8th at one point but have now slipped out of the top 10, to 11th.

Our newest recruit is Bonnie. She has now taken the title of the youngest member of our team and will only be eligible to walk (by age) a couple of weeks before the event. Bonnie is my niece and daughter of Amanda (also on the team and a breast cancer arse kicker). She was my flower girl, shares the same middle name as my daughter and is a real sweetheart – being born on Valentine’s Day, she doesn’t have much choice. She has already kicked off her fundraising efforts with a massive $500 donation! Welcome to the team Bonnie!

If you would like to donate to ‘The Good Tittie Team’, simply click here.  This will take you to our team page.  Simply scroll down to see the members of the team and click on whoever you would like to donate to, preferably somebody who hasn’t reached $2000 yet (or me).  When you are on the page for that person, click on the big green ‘DONATE ONLINE NOW’ button.  It’s that easy.  If you’d like to make it a bit more difficult, go to http://www.endcancer.org.au and then you can search for our team (The Good Tittie Team, in case you’ve forgotten) or search for an individual by name. Any person or organisation donating $500 or more will be rewarded with their name on our team T-shirts. We are the second biggest team in the walk so we will stand out. Pretty good advertising.

This is also a final shout out to anyone who would like to join ‘The Good Tittie Team’ for something that is going to be so much more than raising money for a good cause. It is going to be a huge reunion of family and friends showing their support for two girls who had a pretty shitty 2013. Above all, it will be fun.  We will be ordering uniforms very soon so we need to finalise team numbers. If you would like to join, click on that ‘here’ button above, scroll down and click on ‘Join Team’. Let me know if you’re joining and I’ll give you the password. Go on, do it!

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40. Chemotherapy – round 7……and an ode to Ev

Monday 21st October to Sunday 3rd November, 2013

I turned up to my routine pre-chemo appointment with my haematologist with a bit of attitude this time. I walked in, sat down in the chair and said “I need answers. I need to know what the future holds for me.” I left the last appointment with him a fortnight earlier really having no idea if he thought my PET scan results were good, or if he actually thought they were bad because I didn’t have bulky disease and the scan wasn’t negative.

I think he was a little surprised by my assertiveness. He turned and faced me and looked me in the eye. I asked him a lot of questions about whether he thought the PET scan at the end of treatment would be negative, what would happen if it wasn’t, what my chance of relapse was and what sort of treatment would be involved if I relapsed.

He said if the PET scan after 4 rounds of chemo had been completely negative he would be “super bolshy” (I think that means arrogantly confident or something like that) about the PET scan at the end being negative. Since that PET scan wasn’t negative, he said he was “bolshy” rather than “super bolshy” about a negative PET scan at the end. If the PET scan is not negative, I will probably have radiotherapy to any spots still showing activity, as long as they are not widespread.

If the PET scan at the end is negative, does that mean I am cured? He said he hoped so, but of course there are no guarantees.  I will continue to see him every three months initially to see how I’m travelling. I had asked him at one of the very first appointments about how we would know if I relapsed. I assumed I’d be having fairly regular PET scans but he told that wouldn’t be the case. Apparently they do that in America, but not here. Obviously it comes down to money. If I relapse with lymph nodes involved in my neck, armpits or groin, I can feel them, but if it’s in my chest or abdomen, I can’t feel those lymph nodes, so the lymphoma could just march along with me completely unaware….unless I get itchy again. I didn’t really go into it too much at this appointment, but diagnosing a relapse is definitely something I’ll go into in great detail if I am given the all clear after the next PET scan.

If I am given the all clear, there is about a 10% chance of relapse in the first two years. After two years, the risk of developing other cancers is actually higher than having a relapse of lymphoma. The risk of other cancers is higher than the general population because of the chemotherapy I have received! Good chemo for the good cancer. It might cure the lymphoma but then give you another cancer. Awesome! If I do relapse, the treatment is likely to be a stem cell transplant. He was a bit hesitant to go into too much detail or commit to what sort of treatment I would have, as any treatment for a relapse is likely to be performed in Melbourne under the care of a different doctor.

I left the appointment feeling a little clearer about his thoughts on my prognosis. He doesn’t have a crystal ball so I guess I couldn’t ask too much. It seemed to me that a negative PET scan at the end of treatment was the most likely outcome but the possibility of a relapse and how that might be detected was a concern.

I went downstairs to be hooked up to chemo and was back in the naughty corner again. Getting number 7 under my belt was a bit of a milestone as it would mark the first time I had less chemo ahead of me than behind me. The nurses informed me that my neutrophils were 0.6. I was neutropaenic again having not G-CSF after the previous round of chemo. I wasn’t even the slightest bit concerned that I wouldn’t be having chemotherapy that day but the nurses told me they’d have to run the results past my haematologist to make sure he was happy to proceed. I was OK with that. They were just following protocol.

Of course, my haematologist was happy to proceed but he also told the nurses that I would now be having G-CSF after every round of chemotherapy. I guess I had earned it now, being persistently neutropaenic. My lazy bone marrow hadn’t realised that it needed to work a bit harder so it would be getting some help. My chemotherapy infusion was otherwise very uneventful. Given my episode of vomiting after the last round, which I forgot to mention to the haematologist, I made sure I was sent home with some extra anti-emetic drugs.

The fortnight after chemotherapy was fairly uneventful too in terms of the effects on me. I spent Tuesday, Wednesday and Thursday in bed feeling completely drained, but there was no vomiting which was very fortunate. I hadn’t spent three days in bed after previous rounds of chemo. I had been told the tiredness would be cumulative and it felt like that was exactly the case.

It was in this fortnight that I started the dodgy hodgy chemo cuts reveal challenge and formed ‘The Good Team’, which was soon after re-named ‘The Good Tittie Team’. So it was quite fortunate there were no particularly nasty after effects as I was very busy fundraising and blogging.

I had to go back to the hospital on Monday 28th October for a routine flush and change of dressing on my PICC line. I was fortunate to have an earlier than usual appointment that day which meant I could get out in time to pick up my daughter and her friend from school and take them to gymnastics. This has always been left to the parents of my daughter’s friend, which they have been very happy to do and for which I am extremely grateful. They also usually take my daughter back to their place for tea and then deliver her home, fed and happy. Thank you Tash and Richard! The support from the school community really has been amazing. Although taking my daughter and her friend to gymnastics is really no great feat, it is important to me that I do simple things like that in the ‘good’ weeks as I know my daughter hates the ‘bad weeks’ when I spend a lot of time in bed and everyone else runs her around to school and other activities.

On that Monday, I developed quite severe bone pain, due to the good old G-CSF. It was a strange, throbbing pain around my hips and sacrum. It was constant but made much worse with any change in posture or position, like moving from standing to sitting or vice versa. I also had a band of throbbing pain around my chest when I moved. It was quite a bizarre kind of pain but fortunately it settled considerably after that day. I didn’t take anything for it. As I later told a nurse, I just sucked it up.

This fortnight was also the first time I was asked what once would have been a very confronting question by a complete stranger. I was in Adairs, doing a spot of Christmas shopping (taking advantage of the good week and getting organised early) when a man who looked like he was in his 70’s came up to me and said “Excuse me, have you got cancer?” I thought it was really quite odd to ask that question to a stranger and I did wonder about the state of his frontal lobe (for the non-doctors reading, people with frontal lobe problems are disinhibited and often socially inappropriate) but I wasn’t upset or offended. I actually thought it was pretty funny that he’d just blurted it out so I smiled and said, “yes, I have cancer”. He then told me that his wife had died of cancer about a year ago. I think my behaviour then was even more inappropriate than his! As I was in full-on fundraising mode, I thought “Hmmmm, I could get a donation out of this”. I asked him what sort of cancer his wife had and he said “ovarian”. Bingo! A women’s cancer. So, I told him about the walk to end women’s cancers that I had signed up for but he just said “Oh, good luck with everything” and walked off.

I mentioned in the previous post that my hair loss had not been quite as advanced as I had expected it to be. I think every chemotherapy regime is different and every person is different in their response to it. My hair had thinned considerably, so there was no question it had to be shaved off,  but I had very thick hair to start with so I was far from completely bald. The hair that was there was even starting to grow so I really was starting to look quite a sight with very thin hair exposing much of my scalp. I thought I was looking like a balding old man. In fact, I thought this hair style was quite similar to that of my good friend Ev! I promised Ev that if he joined ‘The Good Tittie Team’ or made a sizeable donation, I would dedicate a blog post to him. Everyone loves a blog mention! Unfortunately he couldn’t join the team due to work commitments (whatever!) but he did make very generous donations to both Lisey and myself. So Ev, this is your time to shine……sort of, because it won’t all be nice.

I’ve already mentioned Ev a few times throughout this blog. He is a high school friend and one of the very few high school friends I have kept in contact with in the now 21 years since we finished. Ev was a cycling fanatic in high school; he still is but age has slowed him down a bit. He used to call cycling hammering, so I bought him a hammer, and got it engraved, for his 21st birthday. I wonder if he still has it. As we got older and our lives got busier, the face to face catch ups became less frequent but there were still fairly regular phone calls and text messages between us.

After I was diagnosed with cancer, Ev stepped it up and really has been a tremendous friend and support to me. When you’re diagnosed with cancer, you really find out who your true friends are and Ev is definitely one of them. There have been many text messages and phone calls, a good percentage of which haven’t been responded to but he hasn’t given up on me! He has visited me several times, once straight after finishing night shift and he even brought dinner! He did confess however, that his beautiful wife prepared that meal, not him. That visit was the day before my PET scan so that Shepherd’s Pie became the celebratory meal when the results were good. We went out for brunch that day and I remember the day well as I talked like a woman possessed and I don’t think poor Ev got a word in, but he sat patiently and listened.

Sadly Ev’s father passed away very recently. Fortunately for me, the funeral was in my good week, so I was able to attend. There were at least seven people, and a few partners, from high school at that funeral, which I think says a lot about Ev. I told him that to have that many high school friends there, so long after finishing high school, really is testament to the great guy that he is. I’d say Ev’s wife is lucky to have him but I actually think he’s luckier to have her!

Sorry Ev, but it can’t all be nice. With any glowing reference there needs to be a bit of a slap in the face too. When I told Ev I thought my current hairstyle was resembling his, I asked him to send me a photo of himself so I could put it next to mine on this blog. To my great surprise, he did send me the requested photos with the accompanying text “Very uncomfortable doing this. It’s just for u and that fucker cancer”. I was also very surprised to learn that these were not Ev’s first ever selfies. So here is Ev and myself sporting our very similar hairstyles.

The front on view……..

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And the more telling, top of the head view……..

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Fairly similar I think (although Ev carries it off much better), so I have dubbed that hairstyle of mine ‘The Ev’ as a tribute to my good friend. After taking that photo, I shaved all my hair off again as it really was looking very average. Quite vain of me!

So that was the end of the fortnight after chemo round 7. Seven down, five to go wasn’t sounding too bad.

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39. Chemotherapy – round 6……the half way mark

Monday October 6th, 2013

I’d only been discharged from hospital the day before and I was back there again for another hit of chemotherapy. I hadn’t seen my haematologist since 26th August as he’d been on holidays. I was looking forward to seeing him so I could ask him what his opinion of the PET scan result was. I was fairly certain it wouldn’t be as overwhelmingly positive as his sympathetic female colleague. Jenni came into the appointment with me. She likes to sit in on them when she can as she finds my haematologist’s lack of sympathy quite entertaining.

I filled him in on what had happened over the last month or so, including the insertion of a PICC line and the recent hospital admissions. I told him I was feeling stupid turning up to hospital and not having a fever and asked him if I should bother coming to hospital if it happened again. His advice was to take some panadol and see if the temperature settled. Quite funny really, as my standard advice when people complain to me about any sort of illness is “take a couple of panadol and have a lie down.” I told him I had really felt quite unwell when I was admitted the second time and that I was surprised I didn’t have a fever in hospital. He said there was nothing sinister on my blood tests.

I then told him about the night sweats and I’m pretty sure that made his ears prick.  Hmmm, could that be B symptoms? (In case you’ve forgotten, B symptoms are fevers, night sweats and weight loss in people with lymphoma, and are associated with a slightly worse prognosis). Surely not so soon after a nearly negative PET scan, and I didn’t have B symptoms when I was diagnosed. It was enough for him to get me on the bed and examine me. He felt my neck and abdomen and listened to my chest and reported that everything looked pretty good to him. That was comforting.

I asked him if he’d seen the results of the PET scan and he said he had. I asked him if he thought the results were good and he said “they’re OK”. I then said “you said you expected it to be negative and it wasn’t. What does that mean?” His response was “it’s not worth splitting hairs at this stage”. That was not so comforting. I didn’t really know what he meant by that but for some reason I couldn’t be bothered going in to it.

I asked him if I would be having G-CSF after this round of chemotherapy and he said “No”. I asked him why not, not that I wanted it, I was just interested in his reasoning. He said there was no point stirring up the bone marrow. I wasn’t really sure what the meant but figured I just had to be severely neutropaenic to ‘earn’ the G-CSF, and since I’d had it after the 5th round of chemo, I wasn’t neutropaenic going into this 6th round.

I also asked him if I was actually going to lose all my hair. I was now over 2 months into chemo and although my hair had thinned considerably, I was far from bald, and some of my hair was actually growing. I took my scarf off and showed him how much hair I had. He asked if he’d told me I’d lose my hair and I reminded him that he definitely had. It was pretty much the only side effect of chemotherapy he had been certain about. No mention of nausea or extreme fatigue.  Oh, he did also mention the cessation of periods. He conceded that I probably wouldn’t lose all of my hair.

I wasn’t annoyed that I’d shaved my hair, because I had to do that with the amount that was falling out. As strange as it might sound, I was actually a bit disappointed that I wasn’t going to go completely bald. It’s not something many get the opportunity to experience, not that everyone would want to, but if you’re going to lose most of your hair, you might as well lose it all! Also, a lot of people who have lost their hair due to chemotherapy find that it grows back completely differently, like my sister-in-law, whose hair grew back completely straight (I was going to say dead straight but that could be inappropriate). So, I was interested to see how my hair would grow back and I didn’t know if the fact that it hadn’t completely fallen out meant it would just grow back the same. I was hoping for completely straight regrowth but actually thought I might just get another twist of the knife with it growing back grey.

After the appointment with the haematologist, I headed downstairs for chemo number 6. The half way mark. Quite a milestone. Although I didn’t really feel that I would be half way until I got through the effects of chemo, it certainly was a good feeling to be able to start counting down the remaining sessions. I didn’t feel I could do that when I had more ahead of me than behind me.

There was nothing particularly remarkable about session number 6, which is good. No threats of delayed chemo, most importantly. Karine wasn’t there as she’d had her last session a fortnight earlier, and Jenni and I didn’t find a new friend that day.

The after effects of round 6 were fairly kind initially. Wednesday was the worst day, as it usually is, but as far as Wednesday’s go it was pretty good. I dragged myself out of bed before 5 pm and even managed to take my daughter to and from her singing/dancing/acting class, something I usually leave to my mum. I had  lovely dinner, cooked by somebody else and went to bed early looking forward to a good nights sleep and the possibility of feeling relatively normal the next day. Unfortunately, that was not to be. I woke up at 4 am and started vomiting! Now I know that nausea and vomiting are pretty standard side effects of chemotherapy, but this hadn’t happened with the previous five sessions, so why was it happening now? Just when it looked like I was going to get off lightly with the after effects!

I didn’t know if the vomiting was due to the chemotherapy or I had just been ‘lucky’ and had a bout of gastro. It didn’t matter really. What I was hoping would be a good Thursday was a day spent in bed feeling completely and utterly drained. Nausea and vomiting is not pleasant at the best of times, but I think when you’ve had chemotherapy and you have virtually no reserve, it hits you even harder.

I think the fortnight after chemo number six was one of the hardest. Perhaps it was cancer’s way of saying “don’t be too excited about being half way through your treatment!”  I was completely physically and emotionally exhausted and my catchphrase became “drained is the new normal”. I was feeling guilty about not being able to do things with my 6 year old daughter and because I felt crap, I had no patience and felt like I was constantly yelling at her and telling her off. I felt like she was suffering too and that was not fair. Although having a 20 month old son is bloody hard work when you’re going through chemotherapy (and even when you’re not), the blessing is that they are (hopefully) too young to remember anything. I do feel guilty about neglecting him too, and I’m sure he thinks my mum is him mum at the moment, but he is happy and I’ll make up lost ground in 2014.

Sally (high school friend, member of ‘The Good Tittie Team’) came over on the Saturday to entertain my children, to give both my mum and I a break. The girl is a star and I can not thank her enough! She cleaned up the playroom, brought dinner and entertained a very busy, young boy. By the time she left in the afternoon, I thought I was starting to feel better but then I performed the rather simple tasks of feeding and bathing my son, and I was exhausted. It really was quite frustrating. Cousin Sonya came for a sleep over that night, to catch up and to let me sleep in on Sunday. My darling cousin has been so supportive during this adventure.

I also discovered a new talent in this fortnight. That of making people cry. Well, it’s actually not a new talent if I think about it. From what I have heard, there have been a few tears shed by people reading this blog but I think that was mostly at the start so perhaps I was rediscovering this talent. I took my daughter to swimming on Saturday morning, and a good and honest friend told me I looked like crap. I told her about what had been happening and my physical and emotional exhaustion and I started crying. Then she started crying. On Sunday something else set me off and there were tears again. Sonya also started crying and then Jenni, who had popped in for a cup of tea, started crying too. The three of us were standing in the kitchen crying, so then I started laughing and wanted to take a photo of us all crying.

At the end of an exhausting fortnight, I was feeling like I needed to book some sort of holiday (local of course, because I wasn’t allowed to go overseas). I needed something to look forward to. The problem was, this cancer and the effects of treatment were so unpredictable. I could book something and may not be able to go because I might be in hospital with a non-existent fever, or I could just be so drained that it when it came time to go, I couldn’t be bothered. There just didn’t seem much point.

The fortnight ended on a nice note with my daughter writing a short but beautiful message for me. I felt I’d been so short tempered with her and was neglecting her, but I guess it just proves that a mother’s and daughter’s love is unconditional. Six down, six to go!

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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.

 

35. Results are in

Thursday 19th September, 2013

Sorry Helen and Lesley. I’ve already made you wait a lot longer for the results than I had to wait, so that’s probably a bit unfair.

After the PET scan, I went to the local shopping centre as I needed to get a few things. One of those things was a mermaid nightie for my daughter. I had seen it in a catalogue and knew she would love it. The store only had it in a size 5 and I needed a 7. I then went to the supermarket to get a couple of groceries. I lined up at the check out and the lady in front of me, who had a lot more than me, let me go in front of her. That NEVER happens to me. Must have been the scarf. Now I just ask people if I can go in front of them if I’ve only got one or two things. I’m making use of the cancer card while I can!

After shopping, I went home with about half an hour to spare before I had to head off to the appointment to get my results. While I was at home, it occurred to me that what I had seen on the CT scan of my neck and interpreted as big lymph nodes which had taken up the contrast, were actually blood vessels with intravenous contrast in them, which is a completely normal finding on a CT scan when you’re given intravenous contrast! Lymph nodes wouldn’t even take up the intravenous contrast.  They take up the radioactive glucose for a PET scan, but intravenous contrast is not given to highlight lymph nodes (I’ll have to confirm that with a radiologist). I had just had a quick look at the CT scan and jumped to the worst conclusion.

I headed off to the appointment and parked my car in the hospital car park. When I got out of the car, a lady who was leaving gave me her parking ticket as she still had more than an hour left on it. It only saved me $1 but it was a very nice gesture and it was the second good thing that had happened that day. Must have been the scarf again. The thought crossed my mind that perhaps this meant the results of the PET scan would be good, since as the saying goes, ‘good things happen in threes’, or is that bad things?

I went into the hospital and upstairs to the haematologists’ rooms. I didn’t have to wait very long. She called me in and she was smiling. ‘Have you seen your results?’ she asked. I told her I hadn’t. I can’t remember her exact words but she said the results were great. She printed out a copy and gave it to me and carefully compared it with the results of the first PET scan, and told me that this second re-staging scan showed only one or two lymph nodes in my chest that were still showing activity (indicating that there was still cancer there). There had been a dramatic improvement in my chest and there was no evidence of cancer in my neck, in the lymph nodes around my spleen or in my spleen. The first PET scan had been suggestive of lymphoma in my spleen although my haematologist wasn’t certain if it was there or not, but this one showed no evidence of it. The radiologist who reported the first scan also raised the possibility of bone marrow involvement although my haematologist was quite firm in his opinion that there was no lymphoma in my bone marrow. This scan indicated that my bone marrow looked normal.

I mustn’t have reacted much to the news that the scan showed a dramatic improvement, as the haematologist kept telling me it was great news. It was fantastic. She said if the scan had been done after three cycles (6 treatments) of chemotherapy instead of two cycles (4 treatments), it probably would have been completely negative. She said my cancer is responding to the chemo and it is excellent news. She then went on to say after two more sessions of chemo I’ll be half way and then I can start counting them down. She was very, very positive and was also trying to give me a strategy to get through the 8 further sessions of chemo I had in front of me.

I asked her if people ever respond like I have but then the cancer has progressed when the PET scan at the end of treatment is done. She said “well yes, but that is very, very rare” and again reassured me that things were great.

I left the appointment and before I exited the hospital I sent the following text to a few people who were desperate to know the results of the scan:

Good things happen in threes. Today a lady let me go in front of her at the supermarket, then when I parked my car at the hospital a lady gave me her parking ticket because there was more than an hour left on it. And my PET scan is almost negative. Doctor very happy. She said if they’d done it after 3 cycles instead of 2 it would have been completely negative.

My phone was then running hot. Text messages, phone calls. I couldn’t keep up. Everyone was VERY excited and relieved. Jenni texted me and said she was almost crying. Almost? I would have thought that result should bring on some tears!

As I drove away from the hospital, I was feeling quite good about the results but I wasn’t excited. It was definitely a huge relief to know that all the side effects I had experienced were not just horrible effects of a treatment that was doing nothing for the cancer. It would make the side effects that little bit easier to tolerate in the future. I didn’t want to be negative Nelly but it was impossible to feel excited when I was only one third of the way through treatment and I still had more than three months of chemotherapy and the associated side effects to endure. Eight mores sessions, which was twice as many as I had behind me. I did spread the word however (although not too widely), that it was good to know that the good chemo was kicking the good cancer’s arse!

I also thought about other people with other types of cancer who go through chemotherapy and experience all the horrid side effects but have no idea whether it is actually working or not, as they don’t have a PET scan after a few cycles to assess how the cancer is responding. People like Lisey with breast cancer. These people usually have surgery, the aim of which is to remove all the cancer, before they commence chemotherapy (but sometimes things are done in a different order) so there is essentially no cancer left to assess with a scan. The chemotherapy is given to take care of any stray cancer cells which might be floating around. There is just no real way of knowing if the cancer responds to that particular chemotherapy. You just can’t compare different types of cancers and their treatments. It’s like comparing apples with oranges. Lisey later texted me with these very thoughts, that she would never really know if the chemotherapy she was given had any effect on her cancer cells. I did feel I was in a fortunate position knowing that my chemotherapy was working.

I drove to the nearest shopping centre to try to find that mermaid nightie for my daughter. Before I went in, I had a feeling they wouldn’t have it because I’d already had my three good things for the day. They didn’t have the nightie but I did find some lovely mermaid bathers. I gave them to her that night and told her I’d had a test which showed my cancer was nearly gone so I bought her a present to celebrate. She was pretty happy with that – both the test results and (probably more so) the bathers.

That evening I texted my radiologist colleague and thanked him for the good PET scan result as I had asked him to make sure it was negative. I also asked him whether he thought my bone marrow did actually have lymphoma in it on the first PET scan or whether the radiologist had overcalled it, which my haematologist had thought was the case. The appearance of my bone marrow was different on the re-staging PET scan so I was wondering whether that actually meant there probably was lymphoma there initially and there now wasn’t. My radiologist colleague agreed that  radiologists often overcall the bone marrow (that is, say it looks like it has lymphoma in it when in fact it doesn’t) and that the appearance on the initial PET scan probably represented reactive change rather than infiltration by lymphoma. Thinking about it later, I decided that my bone marrow probably looked different on the re-staging PET scan because the chemotherapy was wiping it out! I have no idea if that is correct or not and apologies if this paragraph has completely confused the non-medical readers.

So, how did I feel about the results once I had really had time to think about things? I knew they were good results but I also knew they could have been better. And of course, a lot, lot worse. My haematologist (not the one I saw to get the results, the male one who I had seen from the start and would continue to see when he got back from holidays) had told me that he expected this PET scan to be negative. It was nearly negative, but it wasn’t completely negative, so what did that mean? I didn’t have bulky disease (that is, my lymph nodes weren’t greatly enlarged) but I had read about people with bulky disease who had a negative PET scan after 2 cycles of chemotherapy. So given that I didn’t have bulky disease and the PET scan wasn’t negative, did that mean the response wasn’t really that great after all? It probably didn’t because some people have no response at all to the type of chemotherapy I am having (ABVD) and at least I was responding. I just didn’t know what it all really meant.

And I don’t really believe that good things happen in threes. If the lady in the supermarket didn’t let me in front of her and the lady in the car park didn’t give me her parking ticket, my PET scan still would have been almost negative.

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The lucky ticket. It’s a shame it wasn’t a tattslotto ticket!

33. Punks rule

10th – 18th September 2013

Strange title for a post but all will become clear. The days after the 4th hit of chemo involved the usual exhaustion with Wednesday spent in bed but there was nothing too out of the ordinary, or what was becoming the ordinary. Whilst the exhaustion was ‘normal’, it was more annoying this time as there was so much I had wanted to get done around the house while there were no children to make a mess, and time was skipping away. Just in case you’ve forgotten, or haven’t read the relevant post,  the rest of my family were in Bali on that holiday that I couldn’t go on because of cancer and no neutrophils!

On the Thursday before the 4th hit of chemo, I had gone out for a lovely dinner at a local restaurant with a few school mums.  We had a great night with lots of laughs and a few wines.  It was just the night before that dinner that I had shaved all my hair off. One of the mum’s, Andrea (member of ‘The Good Tittie Team’) mentioned the trivia night that was coming up on 14th September at the primary school our children attended. She said they had a spare seat on their table and asked if I would like to join them. I said I would love to. At this trivia night, each table dresses up in their chosen theme and the theme for our table was punks! How I wished I’d known about this just one day before. I would have kept the mohawk!

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How perfect would that have been for a punk theme??!!

Saturday 14th September came around soon enough. I had borrowed some ‘punky’ clothes and accessories, including a fake nose ring, from my sister (the one who hasn’t commented on this blog yet) and found some fishnet stockings but my outfit wasn’t quite complete and I hadn’t been able to find a ‘punky’ wig anywhere. As luck would have it, my good friend, Lisa Waugh (of chemo show bag fame and also a member of ‘The Good Tittie Team’) texted me that morning and I mentioned my dilemma. She happened to be in a shopping centre and she jumped at the challenge of finding me some appropriate attire. She arrived at my house several hours later with a mohawk wig, tattoo sleeves, safety pins and all sorts of other ‘punky’ accessories.  Thank you Lisa!

I wasn’t sure whether to go with the mohawk wig or  to bear my shaved head. My sister, Jenni (fav sis) convinced me that the shaved head option was the best and that I might as well take advantage of it. I got dressed into my punk attire and then went to Jenni’s for the finishing touches. After that I went to Andrea’s house for the application of the punk make-up and we were ready to rock!

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Rockin’ the punk look.

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A bit closer just so you can appreciate that nose ring.

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The mohawk wig. The natural mohawk looked better but unfortunately I didn’t keep it.

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Three punk chicks ready for some trivia. Renee, Andrea and myself (L-R).

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The reason for title of this post becomes clear.

The trivia night was a lot of fun for reasons other than trivia. People who knew I had cancer thought I was very brave exposing my shaved head. And those who didn’t know I had cancer? Well I told them I had shaved my head especially for the night and they were very impressed with my level of commitment to the theme.

I also heard what is possibly one of the most inappropriate things to say to someone with cancer that night, but I thought it was hilarious. A fellow punk who was a hairdresser and was slightly intoxicated was told I had cancer. She had recently lost a good friend to breast cancer and was very interested in my story. She told me I had a beautiful shaped head which I thought was a bit of a strange thing to say, but she told me that she was a hairdresser so basically she was qualified to make that judgement. She told me the shaved head really suited me and then all of a sudden she came out with “YOU’D LOOK SHIT WITH HAIR!” Most people I have told think that is a highly inappropriate and offensive thing to say to someone with no hair due to having cancer, but I thought it was funny, funny in it’s complete randomness, and I laughed. And I wasn’t intoxicated.

On the morning of Tuesday 17th September, I picked up the family from the airport after their 17 night holiday in Bali. When they left, I had the short dodgy hodgy chemo cut number 7 hair cut. My daughter had wanted to help shave my hair off before they went to Bali but we never got around to it. I had told her via FaceTime that I had shaved it off while she was in Bali but I hadn’t shown her. I arrived at the airport, wearing a scarf of course, and when my daughter saw me, she could see some (very) short hair in front of my ears that wasn’t covered by the scarf. In the middle of a very busy airport, she ripped off my scarf and exclaimed very loudly, “You told me you would have no hair when I came back!” For a split second I was angry and was about to tell her off but then I thought, “Who cares?” and I laughed. I was rather grateful however, that I was wearing a scarf with a built in cap so it was very easy to slip back on.

Now, an update on that challenge to avoid a PICC line. I had been feeling that big vein that the diluted, slowly infused chemo had gone into every day since hit number 4 and in the early days things were looking good. No pain, it felt soft. I thought we had succeeded. Then over the weekend it started feeling a bit tender and by the next week it was definitely feeling hard. Mission aborted. I rang the chemo ward on the Wednesday and told them I needed a PICC line. I thought I might be able have it inserted the next day as I would be in a radiology department having a PET scan (a PICC line is inserted by a radiologist) but I was informed I had to be admitted to hospital to have it inserted so it was booked in for the following Monday and would go in before hit number 5 of chemo.

I was having a procedure performed by a radiologist. Naturally, I had to make sure any old radiologist could do this and there wasn’t anyone I needed to avoid. Doesn’t everyone do that? No, just doctors. I sent a text to my helpful radiologist colleague letting him know when and where I was having this procedure performed and asked if there was anyone there I perhaps shouldn’t trust. Within what seemed like a split second, a text came back telling me the name of the radiologist who would be doing it, that this radiologist was a good guy, and in fact was the husband of a work colleague. Small world. There are so many colleagues to thank at the end of this adventure, and I think they might be thankful this adventure is over too!

So, the next day, Thursday 19th September, is the day I would have a PET scan and find out if the chemo I had already grown to hate was working on the good cancer.

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