In my life before lymphoma, I ran a car and truck rental business. During this time I learnt the importance of keeping the fleet serviced and maintained. Although we had our own mechanic we also relied on a team of local specialists who would do the jobs we couldn’t. In some ways that’s been a lot like my care from the Cancer and Blood Centre here in Auckland. The haematologist is the chief planner but the day to day leg work is done by the inhouse nursing team who administer the chemotherapy. Then there are the outside specialists who help contribute to the overall picture of things. The CT and PET scanners, The local blood centre who do my blood tests, not forgetting the support from the Leukaemia society who have a support group for haematology patients. As well as the mental support from the team of Psychologist’s at the hospital.
So you can see that there is actually quite a team of people there to support and help people get through the cancer experience. I guess it’s a bit like a new car when you first buy it you don’t need as many people to look after it because there is less chance of things going wrong. However, as it gets older and starts to lose that new car feeling unplanned things can sometimes start happening. That’s been the case for me with my chemo treatment over the last 14 months. At first all went well and my scan after 4 rounds of Bendamustine while not brilliant at least showed improvement. Sadly it’s all been downhill from there.
With things not going as expected with my treatment the group of people that I have been interacting with has grown. As well as this I have also started to see some people on a much more regular basis. Like the nurses at the haematology ward where I now visit twice a week for blood tests and recently a transfusion almost every visit. The group of people I interact with grew even further over the weekend when I found myself admitted to hospital.
Part of the patients responsibility is to monitor their own temperature at least twice daily even if you aren’t feeling unwell. Mine had been fluctuating around the middle 37’s for around 24 hours with the critical point of 38. When you must call the hospital and generally be admitted. I have found that the worse I begin to feel the higher my temperature gets. So just after dinner on Saturday night I knew that if I took my temp it would be fail result and sure enough 38.3. A quick call to the hospital and Sarah is driving me in. During dry July, Sarah decided to give up drinking, and has carried it through. Just in case of this sort of emergency and today it paid off. Thankfully we don’t live far away and I am there in 20 minutes.
The real reason they worry about your temperature is that if you have low white blood cell counts the body is unable to fight infection as well as it might otherwise. In fact in extreme cases it’s a life threatening situation. I knew this wouldn’t be a problem for me as I had been taking G-CSF injections which stimulate the growth of white cells and two days prior my counts had been excellent. Thankfully I have the above Get out of the waiting room free cards which means that admittance is immediate rather than waiting for ever in the waiting room while they decide what to do with you.
After a quick check over of all the vital signs including an ECG and chest X-Ray, they decided I would live. Of course by then my temp had dipped back under 38 but only just. Next, time to syphon some blood to check for infection. As I have a PICC line they take 5 or 6 tubes from that arm and then proceed to take a similar amount direct from the other arm. This is to check that I don’t have an infection in the PICC line itself which would then produce a different result than the other arm. Shortly thereafter a dose of strong antibiotics was started by infusion and they pretty much left me to it, just popping in every hour or so to make sure I was Ok. Finally at 1.15am I was transferred to the ward, not the one I was expecting but at least I had a room to myself.
The next morning I discovered that Motutapu Ward which is the specialist ward for blood cancers was full and I would be spending a couple of days in ward 67 a general ward but with my own room. As you can see from the above photos I could not complain about the views. Auckland is certainly a beautiful city. Other than my three boys and my oldest son’s partner coming to visit Sunday passed quite uneventfully. Just another dose of antibiotic at 9pm as that’s the time they gave it the day prior and it needs to be every 24 hours or so they told me.
Monday morning rolled around and an appointment I had been waiting a few weeks for was with the oncology radiology department at 9am. Despite having warned the staff on my ward that I needed to attend this they seemed totally unsure about what to do. It was only when I said I would just walk out and go that someone actually got permission from the charge nurse for this to happen. The radiology department is a new group of specialists to me and another lot of people to add to the group I am already seeing.
With planning for an allogeneic stem cell transplant still in the pipeline. My haematologist wanted me to see the radiology people with a view to having the active areas of my lymphoma treated prior to transplant. They however saw things quite differently. The doctor I saw showed me my latest PET scan and showed me that one node is touching the spine one node touching the heart and one node touching each of the lungs. In their view it would only be safe to give me the radiotherapy after the transplant. Otherwise there is too much danger of damaging vital organs prior to transplant. If they where to treat the areas now they would be doing it as palliative care where the chance of causing problems wouldn’t matter quite so much.
I must say my head was spinning as I made my way back to the ward and my little room. I had barely sat down when my haematologist and his team popped their heads into the room. He had come to make sure that I was Ok but also to organise the discharge as my temperature had been stable the previous 24 hours. He gave me a quick check over and confirmed what I already knew, that the current chemo is not working and that the nodes on my neck are growing again. Because overall I have had five different types of chemotherapy and four in the last fourteen months he was a little lost and unsure what to do next. While I haven’t given up the lumps in my neck are a constant reminder of the ever present lymphoma.
I am supposed to have my third round of GDP chemo this week but that probably won’t happen because my platelet count is too low. This gives my haematologist time to consider what to do. Obviously I want my lymphoma gone but I am fast running out of options and I really don’t know if I want to experience yet another cocktail of drugs with a new acronym. Given that nothing has worked this past year it becomes harder to believe that a new regime will be the one that makes the difference but one has to live in hope.
So there are some fairly major milestones coming up in the next few weeks with my fourth PET scan currently scheduled to take place before the end of the month. The results of this scan will go a long way towards determining what direction my treatment will take. Or if the emphasis will shift more towards that offered by the radiology department.