Sarah’s Myeloma Blog

I am still trying to come to terms with how tired I feel. So odd for me. Slept well last night after a poor night Sat/Sun but woke at six. Had to go into the clinic - levels now 1.1. Very tired on return and have had a sleep this pm. Now finding it v. hard to wake up at all. Not inclined to write more, so will try again tomorrow.

Well it’s good to be at home! Sleeping better and eating when and what I want. Family around to run around after me!

I was let out on Wed - it was a very tiring day. Packing I did literally in 3 or 4 minute bursts. I had to go over to haematology and breathe in (through a nebuliser) some disgusting chest antibiotic for about half an hour or so. However, this is better than taking tablets - I will only have to do this once a month for 3 months. Apparently I am allergic to one of the components in the tablet form. It is protective against certain chest infections.

Then I had my line out. A junior doctor did it under supervision. The cuff had embedded a bit more firmly than last time and it required quite a bit of welly. Despite the local anaesthetic it was a bit painful, but more from the exit site which was small and tender. I’ve got a great bruise coming up, but haven’t been sore at all really.

Eventually I went home and straight to bed (after admiring the decorations and clean house!!)

Xmas Day I was very tired, but got up for a couple of hours for presents. We didn’t do a proper Xmas dinner as I didn’t want one and everyone was tired so they had veggie sausages and mash and I had a veggie cottage pie thing. Then Friday I was more active. I went out in the garden for 5 or 10 minutes, had a VERY short go on the cross trainer (exhausted after a minute!), had a shower (sitting on a stool) and watched some TV downstairs.

However, today I’m really tired again. Maybe a mixture of yesterday and having to go into hospital for blood tests and waiting quite a while for results. Have been in bed most of rest of day and slept an hour or two this afternoon.

My neutrafils are 0.93, so creeping up. My appetite is better despite my mouth still tasting horrid. Although I go to the loo relatively frequently, it’s no longer diarrhoea. I am sleeping longer, although I still wake up very frequently and am having some weird and sometimes not very good dreams, mostly associated with my illness and treatment. I still feel nauseous some of the time and have acid reflux - that’s a long term project to tackle. My mouth is better but still tender and a bit sore in places. The main issue is tiredness and weakness - this varies from day to day and even hour to hour, but is pretty profound at its worst. I am beginning to understand recovery will be slow.

I am very shaky on my legs. I will also have to careful about my skin. My bed at home isn’t as comfortable for sitting in as the hospital beds which are made of proper foam stuff, and I’m getting a bit achy. I may buy something to sit on - apparently sheepskins are good.

One of my brothers is coming up to see me tomorrow which is great and I wll try to do a bit more. I have written a list of little ‘must-dos’ for each day eg exercise. On Monday I have to go into the clinic. So maybe I’ll update then. Hope you all had a good Xmas.

Today I was told I should be able to go home tomorrow! I was quite scared at first, as I’m so institutionalised it feels safe here, but I am now thinking that I will be able to eat what I want, definitely sleep better and of course be with the family. It will be 3 weeks since I came in, which isn’t bad.

My neutrafils had gone up to just over 0.6! So just into moderately neutrapenic. Haven’t felt wonderful, as I had diarrhoea this morning and have had to take a tablet to give my poor bowels a rest. Not felt like eating much, especially what’s on offer. Also have low blood pressure - have to drink lots. And I haven’t really slept properly for 3 days. But I did have a sleep for an hour this morning.

Tomorrow I’ll have my line taken out, which I’m not looking forward to, but it’s over quickly. I will probably be shattered by the time I get home!

So hopefully tomorrow I will be able to do a positive post from home!

Just a short update. By yesterday my neutrafils had got to .36 or so. I haven’t heard what they are today, but my other blood counts seemed to suggest everything had made a temporary halt, but this is normal. Apart from being tired (steroids kept me awake all night the night before last and I haven’t caught up yet), I am OK. My stomach is not quite as keen as I am to accommodate more food, and has been a bit sore, but I am taking small portions to get my strength up and ignoring the grumbles. I am as weak as a kitten and have to sit on a stool to shower and then lie down to recover!

However I have managed a few laps of the ward ( which is basically individual patient rooms round a centre block of admin rooms, so not tiny). I have to use one of those walkers the elderly use with little wheels as I am scared of falling. I only go out after vistors have left. Must look a sight. I have my sexy DVT socks on and I have black and white clumps of hair on an increasingly bald head!! Still I don’t have to look at me and quite a few patients are in the same boat! The hairdresser has gone on leave and I guess the rest will be gone soon. I’m fed up with hair dropping everywhere including my food. I had a lovely foot massage today too which was a real treat! Hopefully I can report positively again in a couple of days.

My neutraphils have started to lift themselves off the floor: in the last few days they have gone 0.01, 0.02, 0.1, 0.2 (normal seems to range from 2/3 to 7). I do feel a bit better (although a couple of steroids help). My mouth is still sore but not as much although my taste is disgusting. My throat is much better. I’m taking anti-diarrhoea pills if I get anything severe. I am tired, but the steroids helped today. I will be more tired tomorrow as they are being stopped and that’s always a downer. I possess a pretty comprehensive rash (luckily not itchy) which is likely to be related to one of the three antibiotics I was taking. I’ve slightly lost track and may be on one or two now. I still have bad acid reflux - will really work on it once I get home.

I have eaten more and drunk more and am off the dreaded fluid drip. Soon I’m going out on my first and probably very short walk around the ward for days, now the vistors have gone.

If I’m lucky I may get ward leave for Xmas Day. If I am very lucky, and am off antibiotics, have a count of over 0.5 and can eat, drink and do something else (I think it is mobility) I could get home permanently. I do however still have some little bugs, one possibly in the line, so let’s hope the antibiotics continue to work their magic. My temperature was up for several days in the evenings, but seems to be more settled today.

Oddly, leaving the safety of the hospital sounds slightly unnerving! But I will be fine once I get there. Not looking forward to hauling myself over to outpatients several times a week.

Anyway, off for a toddle now! Hope that the next entry has more, positive news.

Well the last few days have been pretty grotty as expected. Yesterday was possibly the worst, with nausea, awful diarrhoea, and very tired. Could not eat and trying to take disgusting medication was not nice. Today I still have bad runs - so bad I had a bit of an accident at night. I know it’s not really nice to say that, but these things do happen.

My mouth does feel a bit better, but my throat seems swollen still. Feel marginally better today. Have had regular anti-sickness jabs. They make me very dozy though! Have eaten a weetabix and a bit of jelly and hope to eat a bit of mash! What a feast!

Have had to do various stool and urine tests and if they come back negative then I will go on immodium - can’t wait! Also hope for anti-cramping medicine. Height of excitement today - went for a chest x-ray. First time out of my room for a week. That was clear. I do have an infection somewhere - this always happens - but am on 3 different antibiotics to cover all eventualities.

I also had a platelets infusion yesterday (look like thick pee). These help blood clot. I have a great bruise from one injection, so it’s needed.

They are also dripping extra fluid into me on and off. I tend to swell up like a balloon and then they have to give me diurectics which are incredibly irritating.

Just waiting now for an upturn in the cells. Should happen in the next few days. So keeping positive as far as possible, although will admit to a couple of low spots recently.

Definitely struggling a bit more today. Slept well though to just after 6 using half a sleeping tablet. During today my mouth and throat have got so bad I can’t swallow easily at all. Managed 2 mashed weetabix am, but even mashed potatoes diluted with soup defeated me, so I slowly dissolved pink jelly down my throat. The one thing that works to relIeve pain is a soluble codeine type tablet I can have 3 or 4 times a day. Having just taken it, it does help to numb things, although it does wear off. It’s that peculiar experience of a small part of your body dominating everything else. I just know that it will be fantastic when it improves!!!

Still got the runs, so more fluid drips. Also my temperature went up to just over 38 at night, although it went down again this morning. Despite that, the doctors said I was to go on precautionary antibiotics 3 times a day - expensive ones, but not the most expensive apparently! These are just injected into my line.

Made me think about the costs - I imagine my myeloma had cost thousands and thousands of pounds already. So glad we don’t use an insurance system for health.

Getting uncontrollably tired now - comes and goes in phases, but when it comes I just HAVE to shut my eyes. So all side effects still arriving on cue. I find that it helps to be well prepared - I don’t worry.

Well, have felt better. Symptoms arrive as per textbook. Mouth and throat so sore and swollen that eating anything solid and even drinking feels like knives. This is mucositis. Having green mouthwash and could take other bits if it gets unbearable. However, never willing to stop eating, I am mashing up food such as Weetabix and various veggy type hospital foods and eating slowly. Absolutely have to eat, as acid levels are high in my tummy! Also the runs getting worse - and some cramps.  I am tired, but not yet as much as I know I will be.

Had blood given yesterday to boost haemoglobin. Also fluids. White count near rock bottom. I have to get through about about 6 or 7 more days before the baby stem cells start to regenerate, so am entering my toughest week.

Usually wake up between 5 and 6 and get blood taken in some quantity. Also observations (obs). Tend to try to nap later am and 1 to 3 afternoon, interruptions notwithstanding.

Family tend to visit earlier evening. Bob had to eat my pudding today - what a trial!

Passing time by reading, sudokus (mostly unfinished), crosswords (mainly quick), computer, finishing my Xmas cards (yes!) and chatting if there’s anyone to talk to.

Staff are fantastic and if they can they will have a chat, but of course they are often rushed off their feet. The ward is definitely understaffed at times.

Still feeling relatively positive, helped by those around. One day at a time!

Just a quick post as I lost all my last post due to this dongle!!

In hospital, have had high dose chemo and transplant of cell. Felt very grotty with nausea and some diarrhoea. Didn’t get home as Bob had a cold too. Bit better now but very very tired!

May be able to post more in next day or so. Hope you are all OK.

Well, finally off to hospital tomorrow. Bit nervous, but glad to have reached this point at last. Have spent all day clearing my desk and hiding lots of files and school stuff in crates! Have bought and wrapped most of the Xmas pressies (she said smugly!). Doing cards in hospital. Got a whole box of books I am leaving here to be brought into hospital in dribs and drabs. Also a wish list of books for the family to buy. Making to do lists etc for family!! Got to keep them occupied while I’m gone.

I may be able to come home this weekend, but after that it will be 3 to 4 weeks. Bob may do some posts for me, but I anticipate being very poorly for a week or so and not up to doing much on the computer.

Had a lovely email from a friend of a friend in the States who had a transplant in the summer. He offered very good advice/thoughts which I will put in a page on the blog when I get time. Makes a big difference to hear from someone who has been through it.

Took my 24 hour wee in on Monday. My line has leaked badly round the exit site and even after the dressing was changed I was messy again by the evening. I have now stuffed lots of dressing around it and topped this off with a transparent one and bits of tape!! Seems to be holding despite the fact I’m sure it wouldn’t pass a first aid practical exam!! Very sore shoulder and good yellow bruising!

So, if I can’t write directly - hope all my readers have a good run up to Xmas and a relaxing holiday! Cheers!