Three Years

I haven’t been here much lately, but I get the odd reminder on Facebook that it’s been three years since my diagnosis and transplant and I can’t believe it!

There were days when I never thought I would feel well again, but now it seems so long ago and I feel great! We did a funny little video trailer to amuse ourselves, so I thought I would put it up here too – just to prove… you can have a life after leukaemia! 🙂

The video has sound which we think makes it funnier, so turn on your speakers! xx

Lines out!!!

A quick follow on from this morning’s post… I’m now home safe and sound!!!

I have 2 neat little stitches where the line came out, which took longer to be removed than I thought! A bit like skinning a fish, the body tissue grows into/around the  ‘cuff’ on the tube which is there to stop it sliding out, so there was a little pulling and tugging – and waving of a bloody scalpel! But the anaesthetic held up to it, with only a little top up half way through. 🙂  (And I still hate those needles)

Jane’s bone marrow percentage has risen to 84%, still not quite where it needs to be, but going in the right direction and my cyclosporine has been reduced again. By the end of next week I should be off it all together… Yippee! Apart from making me feel ill, (they say I never really got on with it), one of the side effects is hair growing where it isn’t wanted!!! And as I am not yet allowed to a have a lip wax, I am starting to get a shadow!!!!

I should get the results of CT scan next Thursday which, fingers crossed, could mean the end of the anti-fungal drugs, and I’ll also get the stitches out!!! Oh yes, and I can drive again now!

My consultants are really pleased with my recovery so far and have said I am ‘way ahead’. My next bone marrow biopsy is booked for 17th November which is all important as it will show the level of success so far.

All in all – quite a good day out really. I know there’s still a long road ahead, but I am feeling pretty good, and without the tubes sticking out of my chest I feel like I am getting back to being me again. xx

Big Day…

Big day today, as we’re off to Southampton for my weekly check up and to have my ‘line’ removed!!!! Let’s hope it is less painful coming out, than it was going in!! Another step forward in my recovery!

Will also be having a CT scan to see if my lungs are clear of pneumonia!! And the consultant will be letting us know the percentages of my bone marrow, last time I had 78% Janes and 22% mine. What it needs to be is 90 something % Janes!

Am feeling a little scared, but am going to regain some positivity on the journey there…and imagine that beach in Barbados!!!!!!

a barbados beach

 

It’s Been A While

We seem to have moved into a dull and frustrating phase of the recovery. It has been two weeks since my last update because, to be honest, bugger all has happened. I’ve had two visits to Southampton since I last wrote, and neither have thrown up any surprises or much to talk about. They are continually dropping my cyclosporine dose to give Jane’s bone marrow a better than fighting chance, and I am feeling ok – just bloody bored.

I am able to walk further each day without getting out of breath, but I am not allowed to go anywhere! I still have my line in so I still can’t drive, and even if I could I’m not allowed to go anywhere!! They said the biggest problem for me would be the frustration, and I hate to say it… but, once again, they’re right. The only bonus I can think of at the moment is that I still don’t need to buy any shampoo, and there’s no chance of a razor nick as I still have absolutely no need for any ‘intimate’ shaving 🙂

A few people asked how Jane dealt with the whole process and how she is feeling now. Well, before the transfusion she had to give herself injections for five days to promote the production of stem cells which she didn’t find much of a problem. She said her bones ached a bit, but the docs said that was because she was producing too much marrow! Anyway, on the day she couldn’t give the cells from the veins in her arms as they are too narrow. This meant she had to be hooked up through a couple of plastic tubes inserted in her groin. It sounds horrible, but she didn’t feel a thing and the only side effect was later when she came to see me and was walking like Frankenstein’s monster!

Once the medical team had worked out they had enough cells the plastic tubes were taken out and she immediately felt fine. She didn’t have to stay in hospital overnight, and had no side effects – so was completely back to normal pretty much straight away. I don’t think she has given it much thought since!! I did put up a couple of pics of us both as the cells were being put into me, which was immediately after they were taken from her, and she doesn’t look too unhappy does she?!!

the donorimage

Anyway – since then she’s been for a quick Spanish break, had a weekend away in Bournemouth, been out with the girls, and come to visit… which is when we impressed ourselves with our technical selfie expertise and took some photos just to show you she is still fine!!

Speak soon… xx

The Recovery (part 1)

I’ve been home for a week now and feeling absolutely knackered. They said I would feel tired for two or three weeks, and they weren’t wrong!!

It’s been very strange since I left Southampton, the ward somehow became a safety blanket and leaving left me feeling very vulnerable, even though I was desperate to go home. I was definitely completely sick of being attached to various drips and pumps almost 24/7. Just as one drug finished, a quick flush of the pipe and the next one started. Sometimes – three at once!

Anyway, I have a four page check list of dos and don’ts – which following my discharge meeting, Zig very kindly made enough notes to call it five pages! Plus, enough drugs to start my own pharmacy, but as I have to take a minimum of 26 pills a day they’re not going to last long. Pills to help me sleep, pills to stop me feeling sick, pills to stop my body attacking the graft, anti-fungal pills, antibiotic pills ( hello penicillin my old friend), and anti this pill, pro that pill, stop this pill and help start something else pill. I’m sure I rattle as I walk up the bloody stairs.

I feel hot, then cold, then sick, then realise I have a headache, and notice I’ve been up for two hours – god I need a lie down! As much as hospitalisation and the transplant were awful, this recovery is going to take some getting used to.

But, and it has to be a BIG BUT, I am improving. My blood counts are rising daily, hemoglobin is almost back to normal levels, and my neutrophils are strong enough to keep my internal bugs and bacterias in the right place. They say I am doing well, and that everything is going in the right direction. No rashes, no green poo – so I am quite pleased! 🙂 My appetite is slowly coming back, and I can now swallow, but I feel like I have gone back to being a child. The constant salty taste in my mouth – I suppose from the drugs – makes me just want to eat simple strongly flavoured food to overcome it, and Dairy Lea spread on bagels… just divine!

I will try to keep you all updated as we go, but it may be less frequent than while I was in hospital. I am also looking forward to seeing people, but not yet… and as for a visit to a supermarket, well that’s my idea of heaven, but that’s also a couple of months off yet. I can hardly fart without permission from Southampton!!