Hi Maureen,
I'm sorry to hear that. It's really not fair, is it? But hopefully the bed sore will heal quicker than your worst fears and the physio on the upper body meanwhile might at least give Ian something to focus on – along with the wedding which is a great goal and at least there's still a fair few months before that so I'm sure it is…[Read more]

Wishing you and Frank the very best of luck! Now the wait and uncertainty is over – I hope in some ways it will be a relief to just 'get on with it'! You must have had a horrible time not knowing if and when it was going to happen.
All the best,
Helen

Dear Sue,
I'm so sorry to hear your loss. You have been so strong and I can't imagine how difficult this must be, when you must be so exhausted on top of everything else. I hope with time things will get easier and you will be able to look back at all the good times you had together.
Thanks for writing on here – you are also helping a lot of…[Read more]

Hi Maureen,

I just thought I'd drop a line on the depression side of all this. It's not surprising you both feel very emotional and depressed at times, it's a horrible experience and particularly after it's dragged on for a while and with you having to be separate and Ian not mobile it is a very hard situation you're dealing with. It's ok to…[Read more]

Hi Trish,

So sorry you are having to go through this. I'm on my first remission and even already the smallest worry about my results generates huge waves of worry/depression about relapsing so I can only imagine how demoralising it feels, and how confusing to enter a new world of having to make choices.

I think others are better informed but…[Read more]

Hi Alex,

Yes, I'm doing pretty well in 'new normal' thanks…. Due to go back to work from Friday (1 Feb) on a 'phased return' basis, gradually building up. Still ups and downs in both energy and mood I guess, but overall a definite upward trend, with more time between the downs and increasingly able to do more and more things which is so nice.…[Read more]

Hi Grayham,

Just to wish you good luck! I was diagnosed at the end of May/early June and am now in complete remission. I'm not having a stem cell transplant, as I'm on the PADIMAC trial which Megan mentioned, so it's 'watch and wait' and see how that pans out. Like Tom said, ignore any offputting statistics (I also heard some shocking ones…[Read more]

Hi Rob,

Well done on surviving getting the line fitted! Not the most fun thing.

I think we're a fairly rare group having the pump, seems to be a St George's thing – at least I've never seen anyone else talk about it. I don't have any particular tales to tell – I tended just to wear a cardigan with big pockets and stick it in my…[Read more]

Hi Alex,

Nice to 'see' you and hear that you're out the other side of the cycles. Best of luck for the stem cell harvest and SCT! Sorry you have to go through that extra stage – but whatever it takes to beat the myeloma into submission is worth it!

Helen

Oof, I remember that. The doses of steroids (dex) on PADIMAC are like that, 40mg and 4 days in a row which does mean that afterwards you have a massive comedown, like you say. The only 'good' thing is that you learn which days it will happen, and accept that on those days you really don't plan to see anyone or do very much at all… Ideally get…[Read more]

Hi Heather,
Just a quick hello as I'm also at St George's (though now just for check ups, I've finished treatment). I wanted to tell you that I've been very happy with my care there. I had velcade as part of my treatment although I guess overall it may not be the same regimen. They are also incredibly friendly and helpful on the daycare unit, as…[Read more]

Hi Paul,

I'm a similar age (33) and also had a spell in hospital (4 weeks) then PAD. I didn't go on to do SCT so I'll leave others who can tell you more about that! But probably where I'd be more useful is being in a similar boat life-wise: it sounds like you're also single, and obviously sometimes that's a different when you're reading a lot…[Read more]

Hi Deb,
I'm another PADIMAC-er, not UCL but St George's (Tooting). I also went into hospital on my birthday (33rd) at the end of May and had the cancer diagnosis two days later. Fast forward 8 months and I'm now free of treatment, and can actually see what people mean about feeling normal – it really is possible! I've also met a very nice guy…[Read more]

Hi Lesley,

I'm sorry to have to welcome you here… I can't even believe that it's now been nearly 8 months since I was diagnosed. It is a huge huge shock, so give yourself time. It doesn't happen in one day or one week or one month, but you will get used to it and get treated, and you will feel better than you do now (even if you may have to…[Read more]

Gosh Megan and Phil, SUCH GREAT NEWS! Finally home. I haven't logged in for a few days and it's great to be reading about marmite and sofas rather than an IV drip and windowless hospital room. I bet it felt like it would never end… but it has. Similarly I know there will be ups and downs in the next phase, but they will pass too and become…[Read more]

Hi Megan!
Great news that Phil has been outside. A small step but a giant leap….
It may be irrelevant for Phil now but in case useful for the others – when my hair was falling out a lint roller was very useful (available in John Lewis!)
Sending this on my phone down in Cornwall so will keep it short. It must feel far away now but you'll be…[Read more]

Happy New Year Megan and Phil!
Well, the neutrophils clearly have a good sense of timing. You'll be able to toast their birthday every New year's Day now. It's incredibly helpful you writing it all day by day – this thread will be read many times in future! I'm so glad to hear that Phil is continuing to do so well and get through these horrible…[Read more]

Hi Megan and Phil,
Well that's double good news if you look at it like that – and poor Phil feeling rotten but it's very true that once you get to the bottom the only way is up! You might even be past the halfway point of this hospital stay now! And if you think of all the cycles of PADIMAC etc which have gone before, it's way past the halfway…[Read more]

Happy Xmas Megan and Phil!
Another day down, so another day closer to being home again!
Hmm, maybe it's unfair to tell you this in the circumstances but my only problem right now is having eaten so much turkey and all the rest that I feel like I'm about to burst! But yes, I remember those protein drinks and they're very handy. Before you know…[Read more]

Hi Megan,

It sounds like Phil is doing very well, considering – it's a good sign he's well enough to feel bored!! But I'm so sorry you're having to deal with the anxiety of him being in a shared room. I'm not surprised you went into meltdown…. I honestly thought it was normal for people undergoing SCT to be in isolation, although others may…[Read more]