Home Again After a Long Slog

Hi, sorry everyone for not writing an entry for so long. I struggled badly having to go back in and was depressed. I was on the end of a lot of nagging, and telling me to exercise. My muscles are are as weak as water, and on coming home I could not get up the stairs. But now I am making slow progress a step at a time. I do some slow pacing  around and have even managed 1 minute of the cross trainer, though that actually may have been too much.

I have graft versus host on my skin and look terrible. My face is bright red and I have pustules as if I have the plague. I have steroid cream for it and I am also taking steroids. These annoyingly keep me awake even though I am knackered. I have to take sleeping tablets to get to sleep at night,

I am being fed at night through my peg tube and that gives me spectacular poos and wind – sorry. I use incontinence pants to save the worse problems.

I will try to do some quick updates as and when. Hope everyone out there who is being treated is getting on OK. If things go quiet it may be I am back in hospital – hopefully not but it does happen!!

Back in hospital

Hope you haven’t been worrying about the lack of entries. Have to keep this very short but to summarise:

Felt ok the first couple of days out of hospital. Then went to Leicester for appt and was exhausted for the days after that – profound fatigue though this is normal.

On Monday we had another long day at Leicester and my consultant said I should be ok at home. However, the next morning I had a temperature so all the way back to Leicester. Admitted after a long day of waiting to a single side room of the haem ward. But today I was moved into a 4 bay ward to day. One lady here is having hallucinations and thinks the nurses are attacking her.

They aren’t sure of my infection but my c.diff seems to reared up again.

Upshot is that I’ll be here a few more days at least.

Am still being told this is all par for the course and I’m doing OK.

Will be back in touch with any further news.

Home at Last

Just a short entry to say I eventually got home on Monday evening. very nice to be home and Bob and the kids have done a great job tidying and cleaning etc.

I am exhausted – I probably did too much on Tuesday, which is always the case when you get home. Just having to climb stairs etc is tiring.

Yesterday I got set up with a feed pump for my PEG and we managed to feed me overnight.

Today I don’t feel like doing anything, though did get up earlyish. But have had to nap this afternoon.

Tomorrow we have to go back to Leicester for an outpatients appt.

My major difficulty has been trying to get 100mg Ciclosporin pills down – the are HUGE and I had been taking 25 or 50s. Today I just couldn’t get it down, but N’ton hospital swung into action and got me some 25s!

I am still not very hungry, but have eaten a bit more and hope now I’m at home I will eat more.

Will write more as and when.

Could Be Going Home!

Well much to my astonishment I was told yesterday I should be going home Monday if I am OK. Given I still feel like a wet dish rag and have the runs etc I thought I’d be here for at least another week or two. However my neutrophils are up to 6 and while eg platelets are still lagging, they are in their 40s all by themselves now. Apparently they lag behind. I will be expected to still do my PEG feeding at home, so will get a home pump.

Sent us into a bit of a spin as the house has had quite a lot of DIY done to it, and the furniture scattered everywhere, the utility room in pieces and the ensuite shower not finished. People who have had transplants are very vulnerable to spores raised from building dust of any sort (as well as eg compost, soil generally etc).  So not only does Bob and the family have to get everything back in place, but the whole house needs a damp wipe! It is active building work which is the main problem but we have had quite a bit of DIY done, so want to be very careful about it.

Bowels still difficult. The PEG feed is liquid which doesn’t help and my digestion is not used to much normal food yet and sometimes protests. My consultant said I might not see a normal poo for 6 to 8 weeks!!

I will update later on progress as and when.

I Hate Pills!

I put this little rant up on Facebook earlier today, so I reproduce it here for your entertainment:

‘I HATE PILLS! A magnesium tablet is staring at me right now. I have just about managed to eat its twin. It is like eating chalk with a weird cereal flavour. On top of this is: ginormous aciclovir tablet which you have break in half or dissolve into a disgusting sludge, 4 ciclosporin tablets which smell and taste like yeast residue in beer brewing, a white liquid anti-fungal which comes in a little syringe (I often end up dribbling if I get that wrong) and is disgusting, an antibiotic for my runs, a tiny folic acid (I lost one in the bedding the other day), and a poor little omeprazole, which I think is overwhelmed by everything else. I also have a pink Gaviscon type liquid in a syringe, but it is so viscous that I have only been able to train myself to take it recently. So far I have taken 30 mins over getting these down and still have that nasty magnesium one to go…..’

 

I had a whinge about it to the registrar and although he made me take that last magnesium tablet he said my levels were normal now and I don’t need more today. However, if I do keep having the runs I may need them again…..

Trying a proper lunch today. Does not look appetising – rectangle of white fish in parsley sauce with a lump of mash and a lump of some indefinable red and yellow pureed veg. But will try to eat at least a little as it will help the mucositis.

Only Way is Up!

Well I have told my consultant that I will hold her to the claim that today will be the worst – mainly for the mucositis – and things will start to improve.

Really struggled mentally and physically the last few days, but the white cell count continues to rise and some healing and fighting infections should start now.

Some hiccups – have had a lot of discussion about poos and then state of my bottom. Bright green poo can be Graft Versus Host Disease (GVHD) and mine has certainly been a few strange colours. At one stage I thought I had c.diff again and really panicked but while I didn’t understand the explanation, the fact i have had it before and there are some sort of genetic switches too, means it is sort of showing up, even though not full blown. Well that made no sense. But they are treating it anyway.

I have barely been able to read or watch TV and can only take visitors for a short while. Chemo brain is a definite atm.

On drug issues – I have been told that once I stop having the runs (will that EVER happen), I will go from IV to oral Ciclosporin which will certainly please me. It gives me a headache permanently and makes me hot and queasy. The oral stuff is supposed to be much kinder.

Am off the G-CSF which made me ache badly.

I have had horrendous quantities of fluids and am still like a balloon. Just can’t get drinking atm. I have tried hard to keep up with showers etc. Had to just wash from a bowl yesterday as I was hooked up all day. Took forever.

Managing to eat tiny bits of toast and some soya yoghurt.  Guts are very sore. Have been seen by nurse with skin tissue training re red marks on backside, which are being treated. Not sure what caused them – not pressure sores.

So, that’s where I am. Thanks to all those sending comments etc. Apologies if I haven’t replied – I will eventually! Love to all and best wishes to anyone else doing the transplant thing atm.

Hooray my donor cells are starting to engraft!

Hi, after a fairly miserable day yesterday this morning I woke up, staggered to the loo and thought that my backside didn’t seem quite as sore. Then my consultant said the white cells and neutrophils are just starting to rise! Felt quite emotional, despite the fact that I had a splitting headache and felt terrible. Long way to go yet ofc.

Yesterday my nose started to bleed and my knees developed a rash – low platelets. But there was a breakdown of one of the blood storage units and so the platelets didn’t arrive until late evening yesterday. My platelets had gone down to 9 – normal range is from I think about 140/150 upwards…

I have also been stuffed so full of fluids that my whole body is like sausages stuck together and I need more to replace eg magnesium and phosphates. Also having blood today. Hopefully I won’t be quite as tired then.

The G-CSF injection used to stimulate the cells makes me ache badly and I have a dire headache, but hopefully this will pass with treatment and paracetamol.

I have also been put on a different antibiotic as we just can’t quite get the temp down yet – it tends to hover around 37.5ish. I was woken twice in the night, once by the doctor, who eventually got round to me, and once for the mobile x-ray unit who did a chest x-ray.

So lots of issues still to address, but some good news!

Yuck – well and truly on the way down before the up.

Very short. Feel pretty yucky today. That flu feeling plus sore backside, the usual quease etc etc. Just want to sleep until it’s all over, but have several days of down left to go yet.

Have eaten one Weetabix and half a tuna sandwich and suspect that’s all it will be today apart from the feed.

Hair still here surprisingly. Will get it shaved as soon as it starts to go.

So nice as it is to talk folks, I’m going back to the land of nod if at all possible……. xxxx

Update and a mention of PEG feeding tubes

Not much to report today. Still not sleeping well or managing to nap much, so tired, but bored and still nauseated to a certain degree. Shaky, cold and sore backside. Awake as always by about 5.30. It did mean I did everything or had it done very early. My feed machine runs out a bit after 6 so they remove that along with a lot of blood samples and then stick in Ciclosporin which is an immunosupressant drug. Makes you hot and also burns my throat and inside – nasty but necessary. Also having a disgusting antibiotic IV shot thrice a day which tastes bizarre as it goes in. This sets me up for a morning of quease, but I have been managing to eat a Weetabix and rice milk. I showered using the chair and they changed the bed etc. Also ofc there’s the usual interruptions for observations, what I want for meals and cleaning which happens twice a day.

I see a consultant everyday – wonderful people.

I will be having a shot of something to buck my neutrafils up later today in my stomach.

The one message from today and in fact from other discussions is that if you can have a PEG feeding tube ( (Percutaneous Endoscopic Gastroscopy) put in, you should. Has to be done before the transplant. It sounds nasty and despite being sedated it wasn’t a pleasant procedure, but it was short and now I am having 1500 cals a night put in and in fact only have to make up another 200 a day. I have actually put weight on! This helps to fight infections. The key thing is that it takes the pressure to eat off the patient and that is very important. And other forms of feeding aren’t nice. The consultant and nurses all say that. I have to say that I said yes to it before engaging my brain, as I was scared. But it is easy to look after. I flush it through myself and just make sure it is clean round the hole. The feed just drips into my bowels all night from a plastic tube running down from my stomach. It will all be easy to remove and heal up once I no longer need it.

So lesson for today!

 

A Rather Challenging Morning

Well starting on the slide downhill for a week or so, so just a quickie report.

Haven’t slept well – mucositis in oesophagus now and so burning pain all down chest. Trying various things, but it will get worse. Just had anti-nausea pill – is important to ask for these before you feel really horrid.

Well nearly passed out in the shower this morning – no seats in them which is bad. My platelets and fluids are low so not surprising. I’ll be sitting on a plastic chair in future (as well as complaining about the lack of seats!).

Also had a couple of minor ‘soiling incidents’ which can happen as the runs set in – so now have huge pad on – feel like a large baby.

Consultant ordered lots of cultures to be taken and precautionary antibiotics – all par for the course these days. So lost the usual gallon of blood to test tubes.

I’m very shaky but hoping to buck up once platelets arrive. Bob will hopefully be coming this afternoon with newspapers and spare knickers!!

If you are someone coming up to your first transplant – don’t be too put off by this. You will feel like death for what seems an interminable age, and completely helpless, but you just have to put yourself into the hands of these experts and remember that all of this could give you a nice period of remission at the end of it. Just don’t expect to bounce back too quickly.

Remember btw that mine is an allo transplant not an auto and obviously they have different side effects and issues.