Friday, 6 January 2017

Round 27 (Not really round 27)

I'm still so far behind with my usual meticulous reporting!

I'm not sure if I will ever catch up or not, but I figure in the mean time I'd better just keep up!

So this Friday was what I consider my 27th Chemo treatment. I've had two in hospital as an in-patient, which I'm yet to blog about.

This was my first one as a day visit then, for a couple of treatments, and I was a little nervous about because of that, but also because it's a change in treatment again. Not a new treatment, but a return to my original regime. 
I feel that it went quite well at the time, but I was in much better health at the time too, so I've been wondering if I will tolerate it so well this time.

Well, so far it's been quite a similar experience. Today is Sunday and I am feeling pretty strong fatigue, but not the worst - here I am blogging after all.

Before chemo, I was booked in for another fluid drain. First I have an ultrasound so they can pick the safest spot to insert the needle. What they want is a nice big pocket of fluid, and I do seem to have favorite spot. 

I find the ultrasounds quite fascinating and a little bit sad - talk about the wrong reasons! However of course I maintain plenty of gratitude for them too.

Next is the drain. This has to be performed by a doctor. I've lost count of how many drains I've had now (I'm sure I could work it out easily enough in 5 mins, but not now). Each one is a slightly different experiance, and this one was very different for a number of reasons.
 All this equipment is laid out ready for my drain!

Firstly, I almost felt this drain might be a little soon. The timing is very delicate. They need a certain amount to make it safe to do so. Left too long and I will get very sick. This is what has been hospitalising me - drains not being done in time. And it can turn very fast from not being needed to being urgent.
However, the team were satisfied that we had a good entry point so we decided to go ahead. If I waited I could well have ended up in A&E at the weekend, and then possibly checked in to hospital again.

The next milestone with this drain is that I declined to take a sedative. This is huge for me. I remember for my second or third drain there was talk of me not having a sedative and I was terrified and did everything in my power to make sure I got some.

But they do rather knock me out for the whole day, and I had a busy day ahead of me, and this is more like my 6th or 7th drain, I'm getting rather used to them.

The doctor did a fantastic job and with plenty of local and with Dave there holding my hand I coped really well.

But here's the other unusual thing about this particular drain.... They couldn't get any fluid out. We tried all the tricks, and there is no denying there was fluid there, but it would not drain out. There are a number of reasons why this would happen, and we can't be sure what exactly it was. So we had to give up.

So I'm sort of stuck for now. It could be worse. I'm bloated and uncomfortable but managing that will pain medication. I never feel hungry but I can still eat. I'm on the waiting list to have another go next week, but I don't feel the need to check into A&E at present. It's been a long time since I've managed to go this long without a drain and that is awesome. It would have been nice to have a bit of relief but I'm coping. I'm still at home and being well looked after.

Because I'd had the attempted drain in the morning, I was booked for a bed instead of a chair for the day, so that is where I got my chemo too. 

This is not a band t-shirt - I'm loosing track of which one's I've worn and I'm running out. This is a pretty significant souvenir t-shirt though. In 2008, on Dave and I's first wedding anniversary, me and my rowing crew won a race! This was on Tresco in a Cornish Pilot Gig, in the Stern First Race. Bit of a novelty race, sponsored by (delicious) Cornish brewery Doom Bar. Hence t-shirts for the winners - that's not usually a thing. The race ended on island of Bryher with live music and general pub festivities. It was an absolutely cracking night all round.

So this chemo see's a return to the Bottle, which I've just had removed. It see's a return to some old side effects too, including the reaction to cold. I'd forgotten a number of my old tricks to manage this but I'm quickly getting back into them. It's a little different managing it in summer to winter, but I've got this.

On the way home Dave wheeled me back to the car. I've been using the wheelchair since I checked out of hospital before New Year and I must say it's been incredibly useful, and definitely due it's own blog page soon.

Sunday, 1 January 2017

Catching Up

I have a lot of catching up to do. Today is Sunday. I got out of hospital on Friday. I was there for nearly two weeks.

It's going to take a few blogs to get all my usual detail in, so today's blog will be a bit different.

I will start by explaining what put me in the Royal. It's called ascites. Fluid builds up in my abdomen because of the tumors. It needs draining regularly. It can change very suddenly from something that is uncomfortable to something that is intolerable and makes me unable to keep any food down, and from there it doesn't take long for my condition to slide quite fast.

So here is where I'm going to take this blog in a bit of a different direction to my usual style, and start with me trying to relay to you all a wonderful analogy I read once about grief. This is only my poor interpretation so I hope I can do it justice.

It was an article that described grief like finding yourself clinging to your shipwreck, that which you've lost, with massive waves crashing down upon you and almost drowning you. That is the grief, and the waves are so powerful and terrible that you think you will die. But you don't. Even though they keep coming, you hold on and survive somehow. Gradually the waves slow down. Gradually they become smaller. There will always be waves. Sometimes you will see them coming, sometimes you won't. Some will be small and some will still be massive. But you survive them all. They become part of your life.

I just loved this analogy so much. I found it so beautiful. But for me it was very easy to twist into an analogy about what it has been like to loose so much condition so fast.

At first when I was sick I was hit by a massive wave, yes it knocked me under the water but I recovered well and was nicely afloat again before the next wave hit. Well the waves keep coming, but in the case of my health, they keep coming harder and faster, each time I get knocked down it's a little harder, and each time it takes me a little longer to recover, and then suddenly you're not getting any time to recover at all before you're in danger again. Its frightening. You wonder how long it can go on, how much you can take, how serious are things going to get.

The last couple of weeks have been confronting and frightening. I've had the best possible care, but no assurances. 

I've felt gratitude every day, and it's a powerful magic. It fills my heart in a way I can't explain or put into words. I'm very good at feeling gratitude, but very inadequate at expressing it. Any one of you who has so much as sent a good thought my way has contributed to it, but I don't think I can ever let you really know what it means to me. 

Moving forward, as much I definitely needed to be there at the time, and I'm very grateful I was able to be, I really want to stay out of hospital as much as possible. I'm taking things very easy while I recover gently at home, and being very well cared for of course. I feel like myself and my medical team may have been caught a little off guard by this sudden 'storm', but hopefully with some more careful management we can keep me out of hospital.

I'm booked for another fluid drain on Wednesday and Chemo on Friday. The sicker you get, the harder it becomes to do the right things to stay well. Eat well, exercise, even take medication. It's another challenge, but I'm up to it.