The reality check is in the (blog) post.....

Well, today was better...but then if had been anywhere near as bad as yesterday it would still have been pretty gash. Gash may sound a little off.....but it's British military slang (specifically from the Royal Navy and Royal Marines) for rubbish (garbage), or for something that is considered useless, broken or otherwise of little value. There wasn't much value to yesterday.

We slept well, very well.....so well in fact that, after breakfast, Jill was ready for another nap. That wasn't going to happen. A meeting had been arranged for us to sit down with KG, NB and NB (plus others) at 13:30, so we needed to be organised. That included having a hair wash at the stylists in Grouville. (our water at home is not great from a hair washing point of view......not that I'd notice!!) and occasionally visits for hair-washing are made. So I got my chauffeur's hat on and we headed south. Just time for a very quick munch before we had to set off for town (our 4th. visit in 4 days). Eventually we all found each other and sat down in Oncology for our debrief on the weekend....and our plans for the days and weeks to come.

It was obvious that there had been much thinking and consulting going on...and 'phone' calls made. Indeed, as the top man at the Marsden was on holiday, the very top top man had been contacted. It turned out that he was also away, relaxing in Antigua!! He took the call and discussed Jill's case....it takes some believing that someone so high up in the UK's leading cancer hospital would be happy to "get involved" from so far away. Our local Jersey consultants, doctors and surgeons regularly keep in touch with us via calls, texts or messages when they are off island. We just cannot express what fantastic care and support we have received for the last 6 and a half years....we are truly humbled that people care so much...from top to bottom, we are very lucky to have such great people looking after us all.

In very short order the outcome of the discussions are as follows. The first thing is that leaving the drain in Jill's stomach is too risky. Easily risky enough to come first in an international competition for the riskiest of very risky things. So, no permanent drain. The second thing is that, moving forward, Jill's comfort must come first....so no more A&E admissions, no more blood tests (that give us so much pain and trouble)....no more meetings and explanations to doctors who haven't met us before.....and, if we need to get into hospital quickly, a "hotline" number to avoid unnecessary delays and give us direct access to a hospital ward. 

Thirdly, no more chemo. 

Having chemo is stressy...very stressy. The port usually plays up...sometimes it's an hour just to get it to work. Having the chemo isn't great...and the effects of receiving chemo often go on for days. Chemo legs (twitching and "prickly"). Chemo cheeks (red and hot). Chemo taste (a metallic taste in your mouth for days). Chemo "brain" (the forgetfulness and general loss of brain power). Chemo isn't great...after all it's poison...it's trying to poison the cancer cells, but having to poison everything else at the same time. The biggest effect of course is the annihilation of your immune system, which in turn often leads to major problems from simple things like coughs, colds, and minor infections, not to mention pneumonia or other similar diseases. Finally, in our case, (and most importantly) the chemo isn't controlling the cancer anymore. Why put yourself through everything listed above if the medicine isn't working any more. So, no more chemo.....

Some positives of today is the fact that we can also cut out some of the many and various pharmaceutical products that we're taking on a regular daily/hourly basis. Less antibiotics, less painkillers...which in turn also means less drugs to combat the side effects of those antibiotics and painkillers. All in all we should be able to make life far more tolerable....more comfortable....maybe even (in very small doses at obscure times of the day) more enjoyable. Yes, in the background we will still know that this bloody disease that is cancer is still quietly chewing away, but there's now very little we can do to wipe it out....and we need to find ways to put that to one side and "get on and do as much as we can". That's easy to type, but it's going to be far more difficult to do.....but we must try. We will continue to search for those rare, brief moments when one forgets about cancer, and everything seems "normal"...until, of course, reality kicks in again....and we remember where we are and what we're doing. 

We are supported in our challenges by a vast network of family and friends who continue to amaze us with their generosity, their thoughts and prayers, their "good deeds" and their love. There's absolutely no doubt that life would be that much less tolerable without them. Words cannot express our gratitude, so I won't try....but that doesn't mean we are not grateful every day.  

Tomorrow is another day....and there's a visit to the garden centre planned....but not by me I might add. I can barely contain my excitement. I hope out reader is ready for some horticultural horror stories tomorrow!    


Its 10pm, and normally If I write the blog post, I get Steve to check it and vice versa. Last night I was unable to speak, move or even think, and didn't read it until 3am this morning, long after he had posted it. 

Today, as he has said, has been better, and I found myself reading his account of what we had run through today and had discussed at the meeting, only once wobbling a few tears ( Tuesday is a  supposedly non-crying day).  I make the rules. 

Until that is...I read the last few paragraphs and I do so love his honesty, it needs to be said even if the truth hurts and even if it has reduced me to tears.... Is it still Tuesday?

He is right, and we may not have fabulous 'days' when everything goes smoothly but if we can have moments in those days that are precious that's all that counts...

"Life is not measured by the number of breaths you take but by the moments that take your breath away."