For reasons that I hope will become clear, this will be a short post.
There have been a lot of developments since last time I wrote, but I’m not sure there is really very much to say about it. We shall see.
I went ahead with the new chemo as planned nearly 4 weeks ago now. I used the cold cap which meant it was a long, drawn out and painful process, but otherwise straightforward. The cold cap has not become any less difficult to bear since I last used it.
I set off for home and felt absolutely fine. My bags were packed and the next day one of my very best girls drove me over the bridge to Wales where I swapped to my Dad’s car for the second half of the journey to Welsh home. I felt really good, all things considered.
My sister came the next day, as we began our week together to celebrate my birthday. Before we got to the weekend, things started to deteriorate. I started to develop an ulcerated mouth and was in a lot of pain. I called the cancer centre a couple of times for advice, and eventually was prescribed some antibiotics from the local GP.
The next day, I woke feeling really terrible and suspected I was in trouble. I spent a couple of hours on and off the phone to 111 but later on Saturday found myself on the way to A&E at the local hospital. I was admitted and as I write, am still here in hospital for, approaching 3 weeks.
A lot has happened. There have been multiple tests, scans, blood screens, monitoring etc etc . In summary, the chemo caused my blood counts to drop far too low and I developed a serious infection. Neutropenic sepsis as well as a bacterial infection. My white blood cell count was so low the neutrophils were registering zero for a week. The cause and site of the infection is still not clear, but there is also evidence of chest infection/pneumonia. My mouth was so bad I could barely speak. It was traumatic to try to drink water and I didn’t eat anything for a week.
I was treated with large doses of 2 different IV anti biotics as well as IV fluids and pain relief. Eventually the blood counts started to become more stable and the infection markers started to drop.
In amongst the cannulas failing, the inability to eat and drink and fear that comes when your body is completely out of control, it has been quite the most terrifying of weeks. We are just about on top of the pain management, but that of course comes with its own set of side effects to manage. That has been about as bad as it sounds. I spent my birthday in hospital. All my hair has fallen again.During this I have been by myself in an isolated room with no visitors permitted due to Covid.
There have been occasional highlights, GozFam have been able to wave at my window from the car park below, and it’s been a total relief to see them not via a screen. I was also lucky to get a side room with a view over The Pembrokeshire countryside.
Currently the issues remain that my platelets have not risen Enough and are only just stabilising, but at too low a level. I have had 5 plasma transfusions, all of which have helped short term, but not given a lasting solution.
The next big area of concern is that once I started hydrating, I started retaining all the fluid that had gone in. I am puffed up and swollen from my toes, up my legs and in to the abdomen. It makes for a very uncomfortable existence and it’s really difficult to just move about.
The third and final straw came, when it dawned that whilst they had been successful in treating the infection and the bloods were largely improving, something else was impeding the recovery. That something else, is of course further cancer spread. The disease has spread to involve ovaries and parts of the abdomen. This goes some way to explain the pain but also tells us that I won’t recover further from this stage.
I spoke to The Prof himself at the beginning of the week, and with the information he now has from the hospital, we agreed we are at the end of the line in terms of cancer treatment. My body can no longer tolerate the stress and strain caused by chemo. As I have written before, there were no alternatives once this treatment failed. Seemingly overnight, we have got to the point of palliative care, for that is all that remains.
I will be discharged to the family home in Wales, for the time being, under the care of the palliative team, local hospice team and district nurses. I am not thinking beyond that in terms of plans and expectations. If ever there was a time to live in the present, it is now. I am drawing on all the lessons I have learned over the last three and a half years to stay calm and take each day as it comes.
I have been cared for brilliantly by the nurses and care team at the hospital, but I am really looking forward to not being in a hospital environment and not using a commode for the first time in three weeks. GozFam are desperate to get me home and look after me themselves. I can’t wait to demonstrate how really annoyingly needy I can be.
I hope now you have the update you can understand why there isn’t really very much to say.
Thank you doesn’t really cover how much I appreciate all the support I have received over the last weeks, and I know I can continue to rely on over the period to come.
With love, light and a hint of desperation I beg you to check your boobs and bits. Today. No excuses.
Huge love, AG xx