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.