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Ask Caroline, a Macmillan Nurse working with people who have Leukaemia, Myelodysplasia...
Jane is a haematology nurse with extensive experience in stem cell and bone marrow...
Not much going on really its been a while since I came in now about a month I think. I had my transplant on the 13th November and not left hospital since a few days before that.
My new transplant date is set for the 19th December which doesn't sound so bad if I say it quick , obviously leading up to that will be pre conditioning on some new drugs to ensure graft takes this time.
I seem to verge from feeling very negative about graft working and excited that we are trying again as hopefully it will work and I will get out of here. Everyone is so nice but I need my home and family.
Whats the longest people / family members have had to stay in hospital , how do you cope? i try to get up before breakfast each day and before any treatment starts as like to be dressed before being attached to line. Am finding showering harder at moment as legs and arms getting very tired. I think I need to use them more but doc did say having no immune system makes you tired anyway. I always have breakfast , then at the moment after tablets am free for most of the day. I try to email in the morning and read up on the news etc , then if no visitors I have a nap in the afternoon. Lunch - naughty Gabby cant do it. Then its tv time , tea , tv and sleep . Any suggestions to enlighten my day!
I think you are doing your very best, as you say, having no immune system is exhausting. I was told anything up to three months for an allo, and since you are up for the next one, well I would suggest about a month after that one…..sad I know, but it's best to 'get the job done' while you are there , isn't it?
Suggestions of how to keep yourself amused…..I assume you have a laptop there, why don't you write anything and everything about your HL experiences, including how you felt/feeling? A sort of diary/memory thread really. Also, maybe correspond with one of the lovely folk here if they will give you an email address, or even use the p/m system?
Other than that, you sound as if you are doing really well, keeping your spirits up at a time like this is really really hard, bless you…..
Sending you loads of love and big hugs xxxxx
It may sound sad. I play computer game the easyer the better not to taxing.
Sorry that you're stuck in hospital at the moment. Sounds like you're doing really well - dull hospital stays are better than exciting ones! I spent a couple of months in for chemo (not a transplant) - it can get really boring, but is manageable.
If you're well enough, you could also try doing some gentle exercise? Computer games or writing is a good idea, and you could skype with friends/family or see if you can find something interesting to read. Listening to music/radio/films, too...
The last time i had a stay in was about three weeks down in Ward 62 without any windows and i got quite depressed about it, so can only imagine how you feel having been in there for a month already. But as Moomy said, once this new transplant takes you can look forward to moving on and hopefully steer clear of infections and have some well deserved time at home.
I must admit, the solitude of isolation worries me. Like in your case my partner will be looking after our daughter and is bound to pick up bugs meaning she can't visit at times. Previously i had a group of friends visit once a week and an Aunt and uncle that would pop in. I guess they won't be able to visit when i'm in isolation.
I found the mornings to be quite busy when i was in previously. I'd get awoken at 6 for bloods and tablets, snooze until the canteen ladies came around with the breakfast run at 7 and then by the time that was out of the way i'd try to grab a bit of kip or get up and get washed and make calls/facetime with my daughter before the docs came around at 11ish. By the time they'd finished my partner would be in until late afternoon just before tea was served. By this time i was quite glad of the rest. Sometimes i'd get a bit bored on an evening as i'm not one for watching general TV programmes. I'm gonna take a steady supply of Dvds in with me this time. By the time 10pm came around i was desperate to get some sleep knowing that the early start the next morning was going to leave me tired again.
Maybe its worth you trying to get in to a good box set series ( Homeland, Breaking Bad etc ) as they pass the time well but are in 50min episodes meaning you don't have to concentrate for to long at a time if you don't want to. A Netflix/Lovefim subscription are good for this. It costs around £5/6 a month and has a lot of older films as well.
If you have a iPad or tablet, there are loads of little boredom busting games you can waste a bit of time on. I like my music to and would often think of a link to a few albums that i could listen to each day (either a few albums from a same artist or an afternoon of singer songwriters etc). What about reading books on a tablet or kindle or there are audio books to download if you haven't got the attention span. As you can tell i'm into my gadgets but if your not then i guess its a bit harder.
bored is good! it means you're not feeling too ill which is great,
obviously gives you loads of time to brood though which can lead to negative thinking,
all the advice from others sounds good - I was watching a lot of tv and getting quite depressed when my son told me off and said I had to engage my brain - with reading, or games, or meditation etc - it was good advice and I felt better. What also worked for me was making a list - 50 things you want to do when you're well - ranging from the simple to the more ambitious - I only actually got to about 31 but I really got a lot out of doing it and thinking about it.
I'll be having my final intrathekal chemo on the 19th - so a momentous day for us both - feeling fine now thanks for asking apart from the usual little blips.
Hope the days pass quickly for you and keep your chin up,
love Jackie x
Thanks for the reply Moomy , time seems to be passing quite well at the moment. I think its mostly because they have said I can pop home to see kids tomorrow. Cannot believe it , cant wait to give them hugs.
I am trying to write more on the internet and being on here is def a help.
Thanks for your advice
Yes I spent some time in ward 62 with no window or tv , it was only 5 days but so hard. The routine here is a little different the doctors are actually here just after nine! I think the whole set up is much better as you ask for your food when you want it and the Nurses actually come when the buzzer rings.
I had lots of problems on ward 62 with the chemo coming so late you would be on it till the early hours and then woken for obs at 6 . They seem to manage that really well here and always bring it forward if they can the next time.
I am feeling a bit more like reading again so that has been helping but not watched any box sets really , not sure why its something i normally enjoy . I am trying to limit tv watching to the evening if i can.
Well off to play patience for the 50th time !
Yes i know what you mean at least i am just bored and not unwell. ( apart from the cancer thing! )
I was going to ask as you seem to have had lots of different treatments etc , have you had adnovirus ?
Apparently i have picked it up lucky me
Not sad at all , I have been playing patience. Can you recommend any good free games for novices!
Gabby thats great that your going to see the kids tomorrow .... i can imagine... the treatment and transplant must be incredibly difficult when you have a young family ....
Keep posting on here - have you considered starting a blog? xxx
Good luck for the 19th hope that goes well , can I ask what it is ? not heard of it.
Yes I am trying to avoid watching too much tv as just feel like sat in bed all day otherwise. The computer is helping , I think I could email friends more and try to keep in touch.
Reading is slowly coming back but I know once chemo kicks in i wont be able to concentrate again.
Thanks for advice , might give the list a go too!
Its a preventative measure that I've had before during my previous cycles of chemo, not sure whether all hospitals do it, Southampton does and so does Poole in Dorset. Basically its a lumbar puncture in the spine where they withdraw a bit of fluid then inject a little bit of chemo so it can travel up to your brain. I found it hard to accept that I had to have two of these as an outpatient AFTER my transplant, but it was explained to me that there's a blood/brain barrier where chemo that travels round your bloodstream might miss any nasty leukaemic cells lurking round in your brain, so as I said, preventative, not pleasant though.
I would be interested to know if others had had this, maybe its just a Dorset thing, or a leukaemia thing, who knows! We just tend to do what we're told don't we.
Fab that you're getting to see your kids,
roll on 2014 I say.....
love J x
My childern made use facebook. Just used games they used or frends used. It also help me see what was happening at home. That help past a bit more time.
your Andy :o}
Hi Jackie - my mum has had quite a few throughout her treatment (she is on UKALL14 trial for ALL) and since transplant her protocol says she will have them 3 monthly for 2 years....
As you said not always pleasant but she has never found them too bad.... some people can suffer miagranes after but she has always coped quite well with them ...
So i think its a Leukaemia thing.... ;) depending upon the treatment protocol.... (i made sure i got my hands on a copy and have followed it religiously the whole may through so it helped knowing what was coming ;) ) xxxx
Yes bring on 2014 xxxxx
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