Chapter 2: The start of chemo

“Once I had recovered from the surgery, chemotherapy could begin and the process for this started in early November. Six ‘cycles’ of chemotherapy were to be delivered once every three weeks. A cycle is the delivery of chemotherapy drugs administered over a few hours by nurses on each visit to the hospital within a specified period of time. R-CHOP cycles are three weeks each.”

4 November 2016

Dear friends

Apologies again for the mass text but I just wanted to update you following my first  oncology clinic yesterday.

The key take home message is that the hematologist’s intention is to cure me of the Non-Hodgkins Lymphoma. Mark, my GP friend who came with me to the clinic, told me that the wording of this intention in terms of ‘cure’ is a significant indicator of their expectations.

They haven’t staged the NHL yet – this is done on a 4 point scale to measure the extent of spread. The less spread, the lower the stage number and the higher the chances of cure. The odds are 50% if it’s stage 4 and better if it’s stage 2. Staging will be done once a radiologist has advised on whether my adrenal gland has been affected and so I’ll know next week whether it’s a stage 2 or 4 cancer. The cancer is not in the marrow which is good news.  No treatment would mean curtains within a few months, so obviously it’s worth a punt.

Next Thursday I start taking steroids for 5 days and the following Tuesday I have a whole day of chemo. Subsequent chemo will be 3 hour sessions every 3 weeks. They’ll use CT scans to measure tumor shrinkage after the third cycle and at the end of treatment.

So it’s a wait and see game of whether and when chemo works (and in what context*). I’m sticking to an optimistic view or, to be more precise, I’m not thinking about the odds very much and I’m trying to take each day as it comes. As the wise Seneca (one of the founders of Stoicism) said “The greatest obstacle to living is expectancy, which hangs upon tomorrow and loses today. You are arranging what lies in Fortune’s control, and abandoning what lies in yours…The whole future lives in uncertainty: live immediately”. Who would have thought I’d be advocating that sort of thing even a few weeks ago?

Take care,

Nigel x

*This is a geeky researcher joke which hopefully will be lost on most of you.

11 November 2016

Dear friends

Forgive the mass text. It’s not a very personal way of communicating but it helps prevent Chinese whispers.

I had another oncology appointment yesterday and the treatment plan has changed slightly. They have found a tissue mass around my adrenal gland but can’t tell if its benign or malign, so they will carry out a PET scan to answer this question. (PET scans can measure the metabolic activity of tissue). If its cancer, then I have stage 4 NHL, if not I have stage 2. Stage 4 means chemo will also be delivered into my spinal chord as well as on an IV line. So the PET scan is on Tuesday, steroids start on Wednesday and chemo on Thursday.

I have named my main tumor Donald. I’m told that when the steroids/chemo starts, the unwelcome little shit that no one expected will start to shrink straightaway and the discomfort will diminish. So my body has become a political metaphor.

To give myself something to look forward to, I’m going to give myself a good holiday when I am cured. My current destination  shortlist is Rome, Barcelona, Alexandria, Tallin and Middlesborough.

Pip pip (as Bertie Wooster would say)

Nigel

PS It’s just come on the news that Leonard Cohen has died. Sad. He’s a Bhuddist, so he will expect to be reincarnated but as what I wonder.

19 November 2016

Dear friends.

Yet another global text I’m afraid to update you on treatment.

This week has been the start of treatment proper: A PET/CT scan to nail diagnosis, the start of chemo and two subsequent hospital visits for routine follow ups. A mix of good and bad news, mainly good.

The bad is that it’s a stage 4 cancer meaning in my case it started life in my bowel and then spread to lymph nodes elsewhere. I’ve had post-chemo chundering and nausea which have left me feeling rubbish.  I’m told this is not at all unusual. And hospital visits have been very long either because chemo takes ages or it’s a long wait to get seen by a doctor(but this seems to be the norm). And abdominal pain persists but they’re not sure if this is post-surgical pain or the tumor being a pain in the neck.

The good news is that the mass around the adrenal gland is not cancer thus meaning no risk of spreading to the brain. This has also avoided the need for chemo to be delivered through a lumber puncture. In spite of being stage 4, four year survival chances are 80% and possibly higher. Post chemo blood tests have shown my kidneys are doing the tough job of handling the waste from destroyed cancer cells. No hair loss yet but I’m not counting chickens (if that metaphor makes sense). And the nurses and doctors are all very kind and competent. Thanks god for the NHS eh? So hopefully my Donald is being kicked hard in the balls much as we’d like to do the same to one elsewhere.

The stars of the week have been Ian, Mandy, Pam and Mairi for ferrying me to and from hospital and their patience in staying with me for very long visits. And Pam does a mean poached egg on toast. And thanks too for everyone else’s best wishes. Thank you guys, I’m so lucky to have your support.

With love

Nigel

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