Monday 29th July, 2013
I spent most of the week or so leading up to this day working from home, trying to finish as many reports as I could. This was not forced upon me. My work had been great; I had received many supportive emails and phone calls. Again, I am very lucky. There was no expectation that I return to work prior to starting chemo, or at any time in the near future. There was no expectation that I complete my reports. That was my decision. My job is quite busy and I was very aware that everyone was that bit busier now, being another pathologist down. I didn’t want to burden everyone further by having them do even more work by completing my reports. The offer was certainly there though. I was fortunate also, that I had accrued a lot of sick leave. I had enough to continue on full pay for the duration of chemotherapy. I didn’t know if I’d be able to go back to work during the next 6 months but at least there wouldn’t be financial pressure to do so. Several people suggested that I shouldn’t use up all my sick leave. I will say I was a little perplexed by that. If you’re not going to use your sick leave when you’ve got cancer when the hell are you going to use it?
In the day or so before chemo, people kept asking me how I felt about starting chemo. Was I nervous? It wasn’t an inappropriate question, and certainly not up there with the ‘good cancer’ comments, but I just didn’t find it helpful. How would you feel about starting chemotherapy? Whilst I very keen to get treatment underway, I would have preferred that I didn’t have cancer and didn’t need chemotherapy. But I did need it. I wouldn’t say I was nervous but I wasn’t looking forward to it. I don’t even know what my advice would be regarding what to say to someone about to start chemo. Perhaps just let them know you’ll be thinking of them. Support is important so I don’t want you to feel you can’t say anything right to someone with cancer, just be aware that whatever question you ask (i.e. are you nervous about starting chemo?), they have probably been asked 50 times already.
The day before chemo, I received two ‘cancer showbags’ containing all sorts of things like books, magazines, hats, moisturiser, lip balm, chocolate, lollies, sustagen, fresh vegetables, tissues and even a spew bag! These were put together by two friends, separately, who had researched what might be useful for someone undergoing chemotherapy. Very thoughtful indeed. Thank you Lisa and Simone.
My sister Jenni, the one who refers to herself as the favourite, (and in fact, is the favourite at the moment as there have been no comments from my other siblings) had volunteered to take to me chemo as she doesn’t work on Mondays (although she is very busy). It was a generous offer, which of course I appreciated. I had asked the chemo nurses if I would be able to drive myself to and from chemo, but my family would not allow it! I went to school assembly in the morning, as my daughter likes me to go, and then I met my sister at home and off we went.
I signed myself in to the hospital and was directed around to the ‘day infusion’ ward. I introduced myself to the nurses who were expecting me, of course. My first impressions were ‘ there are a lot of people having chemo and they all have hair!’ I probably shouldn’t have been surprised by the number of people having chemo as I have worked on an oncology ward which was always full. I was shown to my chair in the far corner of the L shaped room. I felt like I was being put in the naughty corner. The woman next to me looked like she was in her 40’s but everybody else in the room looked much older, so it seemed intentional they had put us here. I don’t actually know if it was but it seemed that way. Jenni arrived soon after, having parked the car, and was armed with a big camera ready to document my adventure. She was quite pleased when asked if she was a professional photographer.
There were about 10 chairs in the room. They are big chairs, a bit like ‘gold class’ chairs but not quite as comfortable. Things moved pretty slowly. There was a lot of talking and education which went on all day. My veins, which are usually good were an absolute disgrace that day, so I had to soak my hands in a bucket of warm water to make them more prominent. Not a good start for the first of 12 chemo sessions. Finally it was time to put a cannula in and get things started. Of course, the nurse missed on her first attempt. Always the way when cannulating doctors. So she called the charge nurse and a cannula was inserted successfully.
My haematologist popped in to see me. I think he thought it was going to be a short visit just to say hello before I started chemotherapy but I told him I had a lot of questions. I pulled out my phone because I had saved all my questions in ‘notes’ so I wouldn’t forget anything I wanted to ask.
- The first question was about the bone marrow biopsy. He told me it was negative, as expected. I asked him if it was really necessary and I think he admitted that it probably wasn’t. He then started talking about conferences and research and I think he said the way lymphoma is staged is all going to change soon and bone marrow biopsies probably won’t be part of staging. Great timing by me to still ‘need’ one.
- I asked him if someone with Hodgkin’s has an increased risk of other cancers and he talked about the long term risk of secondary cancers, which is lower now with the current treatment regime (ABVD) than it was years ago with other regimes. The aim of treatment is to give as little as possible to achieve remission to minimise the risk of long term complications.
- I asked if there was an increased risk of Hodgkin’s in family members. He said there is a slightly increased risk of any haematological malignancy in first degree relatives (that’s children, siblings, parents) of people with Hodgkin’s but there is nothing special that’s needs to be done in terms of screening. So don’t panic first degree relatives!
- I asked him if you die from Hodgkin’s what do you actually die from? He didn’t answer that one. I actually think he said “let’s cross that bridge when we get to it” and I said “well I hope we never get to it”. I assume you die due from multi-organ failure due to all your organs being infiltrated by those bastard cancer cells.
- I asked him if this chemotherapy works, when would I be considered cured? He talked about the difficulty in saying someone is cured, and instead use of the term ‘complete remission’ when there is no sign of cancer. He mentioned again the PET scan I would be having after 2 cycles (that’s 4 sessions!) of chemo and said he expected that scan to be negative! I was surprised by that. I didn’t realise the chemo would work that quickly. He then said that even if that scan is negative, research shows that 2 cycles of chemo is not enough and the cancer would come back if we stopped then, so we’d still have to continue on with the 6 cycles (12 sessions!).
- I asked him again about going to Bali and again he said not a good idea, but I still thought I’d go.
- I asked him about my prognosis now that I was stage 3, as he’d said 95% chance of cure, or long term remission at stage 2. He didn’t give me a definite answer but he again talked about my small volume disease and absence of adverse features and generally gave me the impression that the prognosis wasn’t that much worse than stage 2, despite the fact that stage 3 and 4 are considered ‘advanced stage’ and stage 1 and 2 with no bulky disease are considered ‘early stage’.
- I then asked him some questions about the risk of tumour lysis syndrome and the need to take the allopurinol and ural he had prescribed but I won’t bore you with the details.
I thought that was enough questions for a quick visit and I’m sure he did too.
Finally it was time to start chemotherapy. I actually thought I’d be a bit more emotional about the reality of starting treatment for cancer, but I think I remained calm. You’d have to ask my chemo buddy (that’s Jenni) how I went. A ‘pre-med’ was given first; dexamethasone (a steroid, given to prevent nausea) and granesitron (another drug to prevent nausea). The first drug that went in was Adriamycin (the A in ABVC). This drug is red and I was told it goes in red and comes out red, and it did. I thought I might come up with cocktail names for all the drugs so I could pretend it was fun, but never got past thinking about it. Adriamycin is given as a slow push which means the nurse stands there the whole time. Bleomycin was next (the B in ABVD) followed by Vinblastine (the V). Both of these are also given by slow push so again the nurse is there the whole time. Dacarbazine (the D) was last. This one is given as an infusion over 1.5 to 2 hours. It stung at times so they slowed down the infusion rate.
While I was having chemo, I noticed my file on the table beside me. In true doctor style, I opened it and had a look through it. I’m not sure if anybody else does that but I think it’s pretty uniform amongst doctors to have a snoop. It really only contained a few letters from my haematologist to my GP and in the first letter he described me as a ‘pleasant lady’. I was quite happy with that although also aware that ‘pleasant’ and ‘difficult’ are the two pretty standard words used to describe patients, so I’m glad he chose pleasant.
At one point early on in the day, the nurse asked me if I’d like her to close the curtain around my chair as she was worried I might see some of my patients. I had a bit of a laugh and explained that would not be a problem. I was served morning tea, lunch and afternoon tea so I didn’t go hungry. There was even enough to share with my chemo buddy.
It was quite a busy day with all this education about mouth ulcers, low neutrophils, look good feel better seminars, wig libraries, excreting chemotherapy in body fluids, looking after myself, etc etc. When we were discussing the local wig library, I thought to myself, ‘oh that’s why everyone has got hair, they’re all wearing wigs!’. So, I had a closer look at the lady next to me to see if she was wearing a wig. Nope, it was definitely her hair. But then again, I was having chemotherapy too and I had hair, so maybe hers just hadn’t fallen out yet.
There wasn’t much time for socialising with all this education. Jenni thought she recognised the lady next to me and her chemo buddy so I was busy looking at her name on her drug bag and guessing what cancer she had. I guessed breast since that is pretty common in women! Finally, after all the education we started talking to her. Her name was Karine. I wondered if I could ask her what sort of cancer she had. Was that the done thing in the cancer world? I assumed it wouldn’t be offensive but then she asked me what I had so I didn’t have to wonder any more. She told us she has stage 2 bowel cancer (that means it is confined to the bowel and hasn’t spread to any lymph node or other organs) and that day was her second cycle of chemo. She explained that she had noticed blood in her stool (she probably didn’t use that word), and thought she better get it checked out, so went to see her GP, had a colonoscopy and they found bowel cancer. She was fit and healthy, ate well and had no family history of bowel cancer. She had surgery about 6 weeks earlier to have a bit of bowel removed. She would have 6 cycles of what was considered ‘mopping up’ chemotherapy (and in bowel cancer, 6 cycles means 6 cycles), she wouldn’t lose her hair and she had an excellent prognosis with the risk of recurrence being extremely low.
I know what you’re thinking. “Aha, she got the good cancer!” But consider this. She’s in her 40’s, she had a bit of blood in her poo and had a colonoscopy, probably expecting they’d find nothing wrong. She was then told she had cancer. She then had to wait to have an operation to have this cancer removed, and I don’t know how long that wait was but let’s say a week. It was probably at least that. Once she’s had this major abdominal surgery, she then has to wait for the pathology results to see what stage this cancer is. Is it confined to the bowel or has it spread to the lymph nodes? Given that she’s not a pathologist and can’t pull favours to get early pathology results, let’s say she waited another week for those results. So that’s about two weeks of agonizing waiting from the time of being told she had cancer to finally being told she had an early stage cancer with a good prognosis. What sort of thoughts do you think she would have been having during those two weeks? Probably thoughts very similar to the thoughts I described in my third post. But that’s not all! After receiving the great news of her early stage bowel cancer, she gets rewarded with the joys of 6 cycles of chemotherapy and all the side effects that go with that. Then she gets to worry about long term complications of the chemotherapy and the possibility of developing another bowel cancer, so regular colonoscopies it is for her. So, does anybody think stage 2 bowel cancer is a good cancer? I certainly don’t.