A Little Update

/ lucyhart13 / 3 Comments

Today it’s two weeks since I was released! I thought it was three and was ready to get out and drive – where to I don’t know as I’m not allowed to go anywhere other than hospital for check ups!! Anyway – once again I was ahead of myself, and still can’t drive for another week.

The last week has been an odd mixture of feeling chronically shit with 24 hour headaches, to sometimes feeling not so bad (in the scheme of things). Zig keeps asking me how I am and the standard answers are: “Terrible”, “Shit” (again), “Not Well”, “Exhausted”, “Cold”, “Shivery” and so on – but I have come to realise that what he really means is relative – so.. “More shit”, or “Less Exhausted” might be a better answer!! Whatever, I just want to wake up and feel better one day and it sometimes feels like that day will never come.

After having had a filthy headache for most of the week we, (Charlie drove), went for my Thursday morning appointment at Southampton. They are still pleased with the progress and have now told me I only have to go once a week to be checked up on rather than twice. That is great news and quite unexpected as I thought I would be in for two 120 mile round trips per week for a few months, but as long as there is no sign of a nasty little virus called CMV I think they will leave it like that. They have also dropped my cyclosporine dose to 60mg, and as that is the main drug that causes headaches it has helped a bit.

By Friday I was starting to feel a bit better, so we decided to get out for some fresh air on Saturday morning and went for a lovely walk along West Wittering beach and round on to East Head. I did feel like a bit of a twat in my snow skiing thermal fleece, furry hooded jacket and long leather insulated boots that I bought for Meribel, next to people in swimming trunks and flip flops, but at least I was warm and comfortable – smeared from head to toe in my factor 50 sun tan cream. What ever happened to a light covering of deep tanning oil on a Barbados beach!!?

So that’s me! Still looking forward to feeling girlie again, with hair to brush and able to dress up in something nice not just functional, but today I just feel knackered and breathless all over again. Fantastic!! 😉

The Recovery (part 1)

/ lucyhart13 / 1 Comment

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!!

Home

/ lucyhart13 / 2 Comments

Last night was my 3rd night at home, my sister stayed as she is taking me to Southampton to my first out-patient appointment

Being home has come with very mixed emotions, I feel quite frightened and vulnerable as I am still very sick and just when I need all that positivity, I am a bit low and thinking ‘what if?’anyway as Zig said to me you have it all back to front, you should normally feel like this before you go on the roller coaster ride , not after! !!!!!!

2 More Sleeps!!!!!!

/ lucyhart13 / 1 Comment

At last, I have been told I am going home on Tuesday 2nd September. I have known for a couple of days and didn’t want to tempt fate, but I just can’t keep my mouth shut (story of my life).

Peeps have asked me “has it worked”, and the answer is… we will know definitely if it has in about 9 months!!! But so far so good, and I have been told I’ve been a model patient!!

Now the work begins. I have no immune system, so I can’t go anywhere, the worst place for catching something is THE SUPERMARKET. I have a restricted diet, no salad, prawns, or runny eggs etc, basically nothing uncooked – and they’re just a few examples amongst loads of other lovely goodies that we all take for granted! I am going to be wrapped in cotton wool for a while, and will even struggle walking from my hospital room to the car park!!!!

Oh and one more thing no gardening or dusting!!!!! Bugger!

See you on the other side, and thanks once again for all your support, it really does help and encourage me to get through something that has been so horrific I wouldn’t wish it on my worst enemy!!!!!! xxxxxxxx

CAT Scan

/ lucyhart13 / 2 Comments

It is now 7.30 and I am waiting for the porter to come and collect me for a CAT Scan at 8am and from this they will be able to take a my detailed look at the fluid on my lung and then make a decision of what to do next!

I don’t know what’s making me more nervous, the results or going through the tunnel!!! Hey never mind, my nail varnish matches my pjs!!!!

‘Set Free’

/ lucyhart13 / 1 Comment

Good Morning,

Sorry for the lack of blogging, but just haven’t felt up to anything!!!!!! I have been spiking a temperature for the last week and now the infection is finally here, not sure where yet, but all tests have been carried out and am off for an x-Ray in 10 minutes.

The consultants are extremely pleased with my progress and it is all normal (god knows what abnormal is?) my blood counts are excellent and continue to rise!!!

On a plus side, I am now allowed out of my room to wander the corridors of the ward (resplendent in my face mask), hence the title. But so far, because I have been feeling so shit, I haven’t quite managed that either, but I always feel a lot better after a good old chunder!!!!!

Good News…

/ lucyhart13 / 2 Comments

After a long week of feeling dreadful I have been given good news! Yeyyyyyyyyy!

The whole of the consultant and BMT nursing staff have been in and out of my cell today, with huge encouragement. The effects of the intense chemo has almost killed me, and I will never use that in fun again! I haven’t been able to swallow for a week, the pain has been too much at times!! But I have hung on with the support from you all, and especially Zig and my sis (seeing her in tears saying “I wish I could take away some of your pain”).

We have been waiting for my, with a little help from Jane’s bone marrow, blood counts to return – i.e. the white cells to comes back! And at last, there is movement ahead and I might start to feel a little better tomorrow… and do you know, the last thing on my list would be a bottle of Bolly, I just want a pint of water with ice and a straw!!!!!

Zig’s Update

/ lucyhart13 / 2 Comments

Lucy has had so much amazing support and lovely messages… so thank you everyone who has bothered.

Sometimes it can take an hour or two a day to tell well wishers how things are going, and as she is so quiet I thought this might be a good place to give anybody interested a little update.

The transplant went well last Thursday and Jane was amazing. They had all the stem cells they needed and then some more, which will help with the immune system. Since then all the blood counts have dropped and she is now neutropenic once again which means she cannot fight infection – even when it comes from her own body. This is quite normal and was totally expected, but it does mean she has developed sores and ulcers in her mouth and throat, which will stay until the counts come up. There also seemed to be a little wobble from the kidneys yesterday, but the ultrasound this morning shows all is ok in that department.

She is currently constantly on two or three bags of IV drips at any one time. Some meds, some fluids, some nutrients, some blood, and some pain killers. She is also on morphine for the pain in her throat, so – all in all – she is feeling pretty crap this week and not very chatty. Apparently she has even given up watching Corrie and browsing FB so we know it’s bad!

The good news is that she now has Jane’s blood group which is a good sign, and the medical staff – who are astonishingly brilliant – are all very happy with the progress and say she has been a model patient!

So thanks again for all the support – I’m sure she will come bouncing back sometime very soon!

Zig x (or Guy if you like!)