Last week I was in the Netherlands, where I found myself in a weird detached state, not able/wanting to fully interact with the people around me. This was partly due to spending a lot of time not understanding what was going on around me, as I don’t speak or understand much Dutch. When people did speak English with me, it was often to ask, quite caringly, how I was feeling or how I was getting on with treatment, to which I would respond simply but honestly, pleased to have some communication and attention. But then they would go back to speaking Dutch and I was abandoned to the silence of incomprehension and left with my own thoughts about cancer and the forthcoming treatment that their questions had unwittingly triggered, which only served to make me feel more isolated and withdrawn.
I suspect my detached state was also from feeling quite low due to withdrawing from the steroids, not to mention a stomach bug that I suffered with for a few days and I’m sure it was partly due to the sneaking knowledge that the transplant was looming ever closer.
So understandably, I was quite glad to return on Tue 8 May, but the very next day I was attending more hospital appointments than I knew what to do with…
Wed 9 May
First, a CT scan (Computed Tomography) of my lungs. As part of the transplant process, I will be undergoing total body irradiation – more on this later. They do a CT scan beforehand to check that my lungs are well enough to undergo the treatment and to have a baseline in case I contract an infection at a later date.
The scanning machine is like a giant Polo mint, where you lie on a bed that rises up and slides through the hole, stopping and moving backwards and forwards at various points, allowing the spinning camera to take pictures of ‘slices’ through your body. There are two little face icons above the ring, one with an open (breathing normally) mouth and the other with a closed (breath held) mouth. Each one lights up as a voice tells you to breathe in, out or hold your breath. It’s completely painless and was over in fifteen minutes.
Next, the insertion of a PICC line (Peripherally Inserted Central Catheter). A PICC line is similar to the Hickman line I had last year. The Hickman line was inserted into an artery in my neck, with the lumens (tubes) coming out at my chest. A PICC line, is inserted into the arm. The benefit of this type of line is a lower chance of infection or complications and it’s a lot less intrusive to insert and to have.
Inserting it was done, as with the Hickman line last year, by a radiology doctor, using ultrasound and x-ray to find the artery and ensure the catheter was inserted correctly. There seemed to be a lot of staff working with the doctor – radiographers, nurses, trainees, all of whom were attentive and introduced themselves and their role in the proceedings – thoroughly commendable if a tad overwhelming. In particular, I was impressed by a senior nurse called Chris, who was in training to insert PICC lines, so worked very closely with Dr Bashir, handing him equipment and discussing the procedure as they worked. He spoke to me before I went into the room, maintained eye contact and checked with me throughout, without being over fussy.
At one point I cried. A concerned radiographer rushed over to ask what was wrong. I was too distressed to put it into words… I had an emotional flashback to the whole scary, nightmarish process I went through last year, which all started in that same room with the insertion of a Hickman line, all the more upsetting knowing that it failed so quickly. I was also fearful about and wondering what will happen this time round. How do you explain all that to someone who’s just being professionally attentive?
Apart from the sting of the local anaesthetic, there’s quite a bit of discomfort and tugging as the catheter is pushed through the blood vessels. The first insertion attempt failed (ouch!), but they succeeded the second time, which was a bit more uncomfortable due to the bruising caused by the first attempt, but it was all over in about 40 minutes.
And finally on to a consultation with Dr Louise Brooks, a very pregnant, clear-speaking, down-to-earth oncologist, who explained and answered my questions about the Total Body Irradiation that I will be having on Tuesday. She explained that of all the organs, the lungs are the most sensitive to irradiation, which can cause scarring, which is why they do a CT scan and lung function test beforehand. She also explained that because of the scarring of the lungs, they will be at a slightly higher risk of cancer than before, so it is imperative that I do not smoke. Well I was just about to take it up again, but bugger that!
Another side effect is a rise in the risk of skin cancer, to 1% more than the average population. Not a high risk, but nonetheless, she had to tell me. She advised that if I see any moles or anything suspicious, to get it checked immediately, but not to worry, as they can simply cut it out. Sounds so simple, doesn’t it?
Similarly, I may get cataracts in about ten years’ time due to the irradiation and similarly, not to worry as they can simply be removed by a small operation. Oh how heavenly my life is going to be if I get through all this…!
Thu 10 May
First, a lung function test, which entailed sitting in front of a machine, with a mouthpiece in my mouth, breathing in and out and holding my breath again. This time with a practitioner beside me giving instructions. At one point, I thought she’d confused me with a woman giving birth as she told me to “push, push, push, push, push, push…” getting frantically faster and faster as I turned purple from expelling all the air in my lungs. Nonetheless, I think I passed the test.
Next was Transplant clinic. A final consultation with Dr Jenny Byrne prior to the transplant procedure going ahead. Any last questions…? This was when she informed me about the change from CMV Negative to Positive.
With this transplant, I feel much more in the dark, less aware of what will happen than for the auto transplant last year. Maybe it just seems that way in retrospect or maybe I’m tired of taking in information and just want a break – I’ve been in some sort of treatment, whether intense or just being monitored, for over 15 months. And at each stage they give you small nuggets of information, then as things proceed, you get additional instructions, medications and more detailed information – each time making me think, why didn’t they tell me about this before. But I think it would feel overwhelming if they told you about everything all at once. You need time to assimilate and as things get closer, you need more specific information about it.
After that, I had my fifth bone marrow biopsy, carried out by a very nice doctor called Raj. I was chatting to a woman, Julie in the waiting room, who assured me that Raj is excellent at biopsy-taking. Then I saw another patient, Robin who I’ve spoken to a few times before who said the same thing and my friend Barbara had also mentioned Raj. So I went in less nervous than I had been feeling when I found out that Amy, the Registrar who did my last biopsy, wasn’t available. It turned out that they were all right – it was possibly the best biopsy I’ve ever had.
The final appointment of the day was for an echocardiogram. This is just an ultrasound of my heart to check that it is healthy enough to withstand the irradiation. It only took about twenty minutes and then I was free to go home.
Fri 11 May
Only one appointment: planning for Total Body Irradiation – quite an experience, but I’ll save that for the next update – prior to checking in to the ward… but not actually staying in.