Hi Iain and a big welcome to Cancer Chat, 

Thank you for sharing your story of your myelofibrosis diagnosis. I can imagine this was a bit of a shock for you but I am glad you are receiving such good treatment in beautiful Cornwall. I hope that the treatment will be successful and that they will be able to explore all possible options that are available to you - our website has detailed information on treatment for myelofibrosis and it might help to read the information we have about coping with myelofibrosis on our website.

I am glad you are getting so much support from work and friends - it is so important when going through something like this. I am sorry to hear that you are having trouble sleeping at night due to the worry - it's totally understandable in your situation but if you see that you are really struggling to sleep, talk to your doctor about it and explain that you are feeling worried and it's making it very hard for you to sleep at night. I am sure your GP will be able to help so that you sleep better again and having good sleep is really important so you can function through the day. 

I also wanted to let you know about other recent threads on the forum from members who have been affected by myelofibrosis and I will mention for example GillianDM 's thread on prefibrotic myelofibrosis or Lindaloo who posted this thread a few months ago on myelofibrosis - feel free to respond to these if you wish and share your experience. We also had someone named George with the username Tomo26 who posted this thread about his myelofibrosis diagnosis. These are just a few examples and I hope that you will be able to connect with others here on Cancer Chat who have had a similar diagnosis. 

Best of luck for your treatment - you seem to be in good hands and I hope it will all go well for you! 

Lucie, Cancer Chat Moderator

Hi Iain, I don't  know if you've been into hospital for a stem cell transplant yet or are still waiting . I got out on new year's eve after spending 9 weeks in hospital.

If you haven't been admitted I'll  tell you the things that the medics don't, of course, if you have been in, you'll know but it might help someone else out.

Get some decent ear plugs, the fans are on 24/7 and you'll need to block out the sound if you want to sleep, especially in a storm.

Don't  worry about pyjama bottoms, just a pair of boxers as you'll be needing to get them off bloody fast.

Never trust a fart. Even when you go for a wee, sit down, the slightest pressure on your abdomen will cause catastrophic events.

Eat as much as you can before chemo, you'll  going to need it.

Walk around the room as much as possible, do not lye in bed all day, your muscles will deteriorate really quick.

Good luck.

Hi Iain

Glad it made you laugh, there's no sugar coating it, your going to feel *** for a while, the actual transplant is a bit of a non event. They hook a bag into your Hickman( have you had that fitted yet? absolutely brilliant they are.) and an hour later your done.

Although you'll be in an isolation room it will be like Newquay in the middle of summer, it starts at 6 when your obs will be taken, then bloods , breakfast , more obs, lunch order etc it's non stop 

I'm doing ok, I picked up GvHD but it's  being managed. Apart from a low blood count I'm living a normal life 1 year on, so there is light at the end of the tunnel.

Your worst enemy will be monotony, so take something in to relive that as you will be in that room for a long time. 

Thanks

i really appreciate your messages!

im stoked that you are feeling normal now

There is a lot of debate over where im going?

I have spoken to a MF transplant expert from so I could end up with them or somewhere else where they will do it under his supervision

GvHD seems inevitable it seems just down to how intense?

I will arm myself with audio books and stuff but I’m looking at a long stint I think

im having a chimera transplant so some of my cells will be left and the the transplant so it’s a bit tricky apparently

i I am so pleased you got in touch as I’m bored of hospital and medical talk now!

a bit of realism and humour is great!

if I could fire questions at you every now and again that would be great

cheers

iain

Thanks again!

having some reality and humour is much appreciated!

I have e books and stuff ready but I will need to remember to walk about

im still not sure where I’m going yet but I find out in a few days 

ear plugs are ordered !

the routine sounds monotonous but I guess that’s to be expected

if you don’t mind I may end up asking a few questions over the next week or so?

my transplant is a chimera one as they leave a small amount of my own cells to mix with the new ones ?

im still confused but I can only take so much medical talk so it’s a relief to chat to you!

thanks again

No problem,happy to keep spirits up.

Kev