Tuesday 16th July, 2013
I was pretty calm over the weekend, although my phone was running hot as I had allowed people to spread the word now that the diagnosis was confirmed, albeit unofficially. I was laughing at little things, like when on Friday after receiving the phone call to confirm that I had Hodgkin’s lymphoma, I went to the supermarket and the check-out boy asked me how my day was. I was so tempted to tell him the truth but I just smiled and said it was good.
The inappropriate comments were coming in thick and fast, but Lisey had warned me that would happen, so I mostly laughed at them and we compared notes. They were mostly comments from people trying to say something positive, and the ‘good cancer’ comment was by far the most popular. I think I’ve already made it clear that these comments aren’t helpful so I won’t go on. I suggested to Lisey that we should write a book called ‘Things not to say to someone who has cancer’ but she told me it had already been done (check it out here). I still think we could do it better.
My appointment with Dr Matter of Fact was at 4 pm on Tuesday 16th July. I dropped my son at my mum’s house and arranged for one of the school mums to pick my daughter up from school as I really didn’t want to take children to the appointment with me. I entered my doctor’s room and sat down. He didn’t even tell me I had nodular sclerosing Hodgkin’s lymphoma. Clearly he knew that the pathologist who had organised her own lymph node biopsy already had the results. He just said something along the lines of there being no surprises and that he knew that’s what it would be so who needs pathologists? It wasn’t inappropriate, it was humorous.
Now that we knew for sure we were dealing with Hodgkin’s lymphoma, there were a few extra tests that needed to be done to complete the staging. This refers to tests that are done to determine how advanced, or what stage my lymphoma was; 1, 2, 3 or 4. I’d had a CT scan which suggested I was stage 2, but I needed a PET scan and a bone marrow biopsy (damn!) to see if there was any lymphoma lurking in places that hadn’t shown up on the CT scan. A PET scan is similar to a CT scan but a lot more sensitive. You are injected with radioactive glucose which is taken up by metabolically active cells (cancer cells!) and these light up when you are scanned (I’ll explain this more in a later post). A bone marrow biopsy is basically where you have a bit of bone drilled out of your hip to see if the lymphoma is in your bone marrow. He said you could argue whether the bone marrow biopsy was really necessary but that we should do it. As a doctor, I understood it was needed for staging but as a patient I did not want it. He told me it wouldn’t be that bad so I asked him if he’d ever had one. He said that he had, several in fact. OK, then he was allowed to tell me it wouldn’t be that bad.
We then discussed the treatment which would involve 6 cycles of fortnightly chemotherapy. The regime is called ABVD; one letter for each of the drugs I would be given – Adriamycin, Bleomycin, Vinblastine, Dacarbazine. He talked about a different regime, BEACOPP, which the German’s like but that doesn’t seem to get much of a guernsey as first line treatment in Australia. I think he said it has a higher success rate but more long term complications. So back to my chemotherapy, 6 cycles of ABVD. You would be forgiven for thinking that 6 cycles of chemotherapy means 6 sessions of chemotherapy. Not so. For Hodgkin’s lymphoma, 1 cycle of chemotherapy is 28 days long and involves two infusions of exactly the same drugs given two weeks apart, on day 1 and day 15. So, I was having 12 sessions of chemotherapy. He didn’t try to sugar coat it, being Dr Matter of Fact. He just said 6 cycles of chemotherapy which for you means 12 treatments. 6 months of chemotherapy. Why not call it what it is? 12 stinking cycles of chemotherapy (can you tell I’ve written this post after I’ve already had some chemo?). Clearly it’s psychological. 6 cycles of chemotherapy sounds a hell of a lot better than 12.
He discussed some of the side effects. I would lose my hair, I’d have a weakened immune system, my periods might stop, I might have a bit of fatigue but nausea wouldn’t be too much of a problem. It was sounding like a bit of a walk in the park. I asked him about going back to work and his response was “suck it and see”. Honestly, that is what he said. He said some people curl up in a ball and can’t cope with anything else and other people go back to work and work twice the hours they were working before they started chemotherapy. I thought I’d be somewhere in the middle. He said I should try to keep life as normal as possible, so it would be good to go to work, perhaps part-time, so I wasn’t sitting at home twiddling my thumbs thinking about all the long term complications. Yep. Two young children. So much thumb twiddling time available! Surely only a man would say that. And speaking of the long term complications of the good cancer, there are many. There is a risk of secondary malignancies (cancers) like leukaemia, heart damage, lung damage. The list goes on. Radiotherapy adds further risks but I probably wouldn’t be having that.
He was very positive in a matter of fact kind of way. There was no sympathy whatsoever. He was telling me how it was. I liked him. He told me that based on the findings of the CT scan which indicated I was stage 2 and had small volume disease (as opposed to bulky disease where there are lymph node masses greater than 10 cm in diameter), I was young (apparently) and fit and had no other adverse features (these are things like anaemia, low albumin and other things found on blood tests), I had a 95% chance of being cured. Thinking back, he probably didn’t say cured because that is not a word that is thrown around freely in the cancer world. He probably said there was a 95% chance of treatment being successful. That means no signs of cancer, or remission, at the end of treatment. Then there is the risk of the lymphoma coming back. The risk of that is highest in the first two years. He told me I would have another PET scan after 2 cycles (4 sessions) of chemotherapy to assess the response and then another PET scan at the end of treatment.
I had mentioned at our first meeting that I had a conference in Queensland in August and a family holiday booked to Bali in September. He said Queensland would probably be OK but he would advise that I didn’t go to Bali as it is not the sort of place I would want to be with a weakened immune system. Chemotherapy wipes out your white blood cells which are cells that fight infection. So I would be at risk of getting sick and if I got sick he didn’t think Bali hospitals would be a good place to go. I wasn’t convinced it was so risky and at that stage still thought I’d be going to Bali, maybe for one week instead of two. With regard to the weakened immune system, he said I would be having a blood test before each chemotherapy session to check, among other things, my white cell count (mostly interested in the neutrophils which are one type of white cell). Sometimes chemotherapy is delayed if the neutrophil count is too low but he said with Hodgkin’s they usually push on with treatment regardless of the neutrophil count, as long as the patient is ‘well’ and this pushing on is apparently one of the reasons the treatment is so successful. He also said because the success rate is so good, the focus is on doing as little treatment as possible to reduce the long term side effects. No point ‘curing’ 100% of patients and then have them dropping dead from leukaemia a few years later.
The bone marrow biopsy would be done on Wednesday of the following week, 24th July. I asked if he’d be doing it but he said he’d done his 2000 so someone else would be doing it. His initial plan was for me to start chemotherapy straight after the bone marrow biopsy. Although I was keen to get treatment underway, I asked if I could have chemotherapy on Mondays instead and he said that was fine, so Monday 29th July it was. As it turns out, that was a very wise request by me.
That was pretty much all there was to it. Once again, he managed to make me feel like I just had a cold. I know we’d just talked about cancer and 6 months of chemotherapy and having bone drilled out of my hip and long term complications and recurrence, but I wasn’t feeling like a cancer patient. I went out to the reception desk and they informed me I would get a phone call with an appointment time for the PET scan. I headed out to text the many people who were waiting to hear what happened. His receptionist then called out for me to come back and my haematologist gave me a prescription for allopurinol and told me I also needed to take Ural and gave me instructions on when to start. He didn’t tell me what it was for but I knew. It was to prevent what is known as ‘tumour lysis syndrome’. This is a syndrome you can get when you start chemotherapy and is due to the breakdown of large numbers of cancer cells. It usually occurs when there is a big tumour load or a lot of cancer. I apparently had small volume disease and now he’s giving me drugs to prevent tumour lysis syndrome. Is there something he’s not telling me? I decided not to dwell on it. He wasn’t really one to hide anything.
I headed outside and sent the following group text. “Hello well wishers. Have seen haematologist who is a lot like me and not overly sympathetic. I am strangely very calm. The plan is PET scan and bone marrow biopsy (ouch!) next week then start chemo for 6 months (every fortnight) on Monday 29th July. Will have another PET scan after a few months to assess response. He says I have a 95% chance of being cured. Doesn’t mean I won’t be in the 5% but the odds are good.” I then got a flurry of texts back and I appreciated every one of them.
I picked up my son from my mum’s house and my daughter from her friend’s house where I was presented with lasagna for dinner. Thanks Andy! I then drove home, quite pleased that there was a clear plan of action in place.
Oh, I almost forgot my haematologists parting words. “It could be worse.” I agreed with that. It wasn’t good but I was well aware it could be worse. My lymphoma could have been more advanced, it could have been a different, widely disseminated cancer with no hope of a cure. I could have died in a terrible accident so nobody even had any warning that I was going to die. Yes, it could have been a lot worse. But it could have been a lot better too. It could have been nits!