This topic contains 29 replies, has 15 voices, and was last updated by 
HelenR 11 years, 6 months ago.
Hi Jo
The lister is also my local hospital. I live in Hinxworth near Ashwell but work in Stevenage old town not far from the Lister. I am just trying to work out the logistics of travelling down so often although I am reassured by the things people have said already. I have also looked at the option of my husband driving down and parking at the local NCP car park. This may work out a lot cheaper. I wonder if any one else does this?
Are you on a trial? It would be good if there are some bits I can get done locally but I am not sure how possible that is if I take up the trial.
Thank you for your understanding
Deb x
Deb there's an NCP in coram street which I think costs around 18 quid a day, and another under Euston station which I think is owned by network rail that I've used before. Both very close to UCL.
There's quite a few NCP parking areas near there but these are the ones I've used.
Thank you
Dear Megan
Thank you so much for the useful information. It looks like that as long as all my pre tests are ok and I sign the consent form I will start the first line of treatment on jan 28th.
I am hoping this will hold off the need of the stem cell replacement for some considerable time but it all seems a bit of a lottery!
I have heard a rumour that it may be possible for the patients partner to be put up in a local hotel when they are in for the longer spell in hospital. Do you know anything about this?
I must admit our lives have been turned upside down by all of this but i am trying to get my head around it the best I can.
Thank you for your kindness and support.
I do hope you are all doing well .
Take care
Deborah
Hello Deb,
We are back at Bart's today for blood tests for Phil, the first since he was released on Wednesday after his SCT. Phil drove us here today as there is no congestion charge on a Saturday and I wouldn't let him go on the tube until we know his blood counts have all recovered. 🙂
Bart's has a hostel that family can stay in right next to the hospital. It is £30 per night but I never actually stayed as the time I needed it was Christmas when there was no public transport and that is the one time of the year the hostel was closed!!! I found the details about it on the hospital website under the Patient and Visitor information section. I am sure UCL will have something similar, you can check the website or ask your nurse specialist, they might have the details.
I hope this helps. I have found that on top of learning all about Myeloma there are also a lot of logistical things you have to deal with and it can feel overwhelming but just take it one step at a time and everything will get easier.
Megan
Debs
UCH has a 'hotel' for people doing treatment. They call it ambulatory care, meaning if you are well enough to walk round the corner you stay there instead…so instead of keeping you in overnight in a hospital bed when undergoing treatment they put you up in their hotel. It's meant to be nice and doesn't cost you anything (I think). I believe that your partner can also stay overnight too.
Thank you I have just looked it up looks great!
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 who's had two remissions of 7 and then 10 years, so try to focus on numbers like that rather than anything more scary. It's so individual and things are improving rapidly too.
Keep your spirits up through the long slog, but be reassured that there is light and life at the end of the tunnel! And velcade in particular seems to have a great reputation, so that to me was the appeal of signing onto PADIMAC. Like Megan says, different people respond at different rates but fingers crossed it will have a good and speedy effect on you – but at the end of the day, the doctors will make sure you have whatever is needed to whack it on the head and into submission. I was lucky and had a complete response (CR) very quickly, so I only had to have 4 cycles of treatment (so 12 weeks or in fact 13 because it had to be delayed once when my counts of something were too low) and then a stem cell harvest a few weeks later. My stem cells are safely in the freezer but I didn't do an SCT for now – hence the fact I can get back to normal life a bit sooner, which is great.
I realise that is all gobbledygook to you at this stage, but don't worry it gets clearer over time! Trust your doctors and it will all work out.
Best wishes,
Helen
Thank you Helen you may have just saved my life as I am coming down from a large dose of steroids and feeling very low and despondent. Fingers crossed we will all get through this.
Best Wishes and Take Care
Deborah x
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 waited on hand and foot! Sleep lots.
But it's good that you're realising the despondency isn't fully 'real', it's drug-related, so it's a side-effect which will pass, just like all the other side effects.
Hmm, what can I say? One of my consultants said it affects some people like cocaine (which I've never had) so that at least made me laugh: "What? You mean the NHS is basically paying for me to be totally off my head for 72 hours solid? Crazy." At least you can impress any young teenage relatives you may have with tales of your drug-fuelled existence… 🙂
Also now I come to think of it the first time I had steroids was in hospital – like you, before starting PADIMAC in full – and I had crazy dreams etc, total insomnia. I dreaded taking them again. But actually the doctors pointed out to me that other things would be different so it wouldn't always be the same – and it wasn't. Still bad, but never as bad as the first time. Also I took sleeping pills occasionally.
But yes do focus on the positive possibilities, and take it a step at a time to beat this thing. And rest lots, makes it easier for your body to do its stuff – the body does have amazing healing potential even without all the extra drugs helping it.
Anyway, talking of resting – I'm going to sleep! I may not be on this site again for a little while but good luck!
Helen
Hello. Another PADIMAC-er. I'd just enjoyed my 39th birthday when the diagnosis came for me, last year.
Just hang in there through the ups and downs of the DEX. Personally, I found it got easier each time – not to say I wasn't glad when it finished, but nothing compared to my experience in the first 2 cycles which I thought, at the time, were going to finish me off!
I'm now enjoying a month of normal-ish and about to begin prep for stem cell harvest – and SCT (sadly, my only partial response on PAD).
For now you need to let your body rest as much as it needs to, and wait. You will almost certainly be feeling better than you are right now, soon enough.
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
Hi Helen
Thanks. Yeah, I was a bit gutted when I realised what was coming – and it's such a massive disruption, aside from everything else. But if it can keep me feeling healthy for a good period of time, then it will easily be worth it. The quality of my life the last few weeks – compared to what it was like in the autumn – is incredible.
How are you getting on? Back to work, and "life as normal"? I hope so. We need to grab as much normal as we can.
Because I am a bit of a nut, and because I just hate being knocked off course, I am doing my best to complete my teacher training on time despite the treatment. And I'm even continuing to run my business (a little) in the gaps. Exhausting, but every hour of "normal" is, well, an hour of "normal". And what else can we ask for?
Alex
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. Transitioning back to normal life is itself quite a full-on thing, not always easy, but much nicer than treatment!!
I'm very impressed with everything you've done – serious effort that must have taken! But I can imagine what you mean about not being knocked off course. I self-funded myself on a masters a few years ago and suddenly had to have an operation – nothing like myeloma but felt a big deal at the time – and although it was supposed to be a 6-week recovery I didn't want to postpone the course for a year so I stubbornly went back after 10 days and battled through. This time around I felt the opposite – very happy to have a 'sabbatical' when I feel like I've been pretty flat out for years and giving a lot to work, time to take a break. But now I'm quite looking forward to getting back, to have other things to fill my head for one thing!
Anyway, I just came on here to say good luck for your harvest which I think might be soon? Hope you get it done in one day!
Helen
Hi Kerry
How are you and how is melv
Love sarah xx
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