Dear Chris
I'm a few months post transplant now and looking to go back to work in the next few months. I worked up to stem cell collection point (I'm a nurse) since transplant in august I've been slowly recovering, we are all very different in our recovery speeds. I think the reason no one talks much about finance on here is that it is such a difficult subject to address. I've just filled in the forms to send away for the basic entitlement I'm due and they are very time-consuming. I expected to be back at work well before now and am gradually facing up to the reality that I might have to reduce my work hours and use the quality time I have now with my friends and family as I don't know how long I will be as good as this. It is hard to make these decisions and I've been a bit ostrich like until now and assumed I'd just carry on as before but my priorities are changing now. You should have a chat with a Macmillan benefits officer or one attached to your oncology unit, but no rush decisions yet, you have enough on your plate at the minute with the chemo and the ascr to come.
Keep your chin up
Helen
Hi Wendy that's also a good quote I was only looking at single trips but I suppose an annual policy might be a good idea, I might want to go elsewhere as well8-) I am told that Revlimid is only a therapy not chemotherapy so there is not supposed to be a problem and there is less risk of DVT with it than thalidomide. Enjoy the skiing, I've never been.
Helen
Hi Dai
Bit of a blow for you, I'm sorry, I was just reading the bumf about this study on the mmuk site and it sounds very encouraging, I'll keep my fingers crossed for you.
Helen
Oh no David -now I don't know what to do! I did fill in all ailments, I'm happy to say I never had anything wrong at all before mm and husband only mild asthma ( allergic to cats- and we have one:-/ ) so all my quotes included full disclosure and I assume this is taken into consideration hence the great variation in quotes? Or have I got this wrong? I did go through the list from myeloma uk but have not yet done the telephone route as I'm waiting until I'm 6 months post sct -it seems that being an inpatient in the last 6 months raises the premium hugely.
Phil thanks too, Flexicover is about the same as LV. LV will cover me but not for myeloma, though I do wonder what could happen with that in the space of 3 weeks and I'm as much at risk as anyone else of being run over by a bus:-P and I would be covered for that. I do have to have extra deep vein thrombosis cover and a supply of anti virals and antibiotics to take in case of emergencies
Anyone else out there had experience with travel insurance? And travelling? Perhaps I should put this on a separate thread I know there is already one on here but I've no idea where to find it now:-)
Thanks for the info I've lots of time to sort it
Love Helen
Thanks Claudette
That is really helpful, I've found quotes from £800 down to 200 for the 2 of us (husband is mildly asthmatic and he costs nearly as much as me!!) lv seems to come in at a handy £83 for their 'premier' cover so I'm very grateful for your help, look after yourself
Love Helen
Hmmm yes very similar, I lost masses of weight too. I'm on 25mg revlimid, they say they might reduce it if necessary, wait and see.
Hope you have a good old rest and some fun in spain it is exciting doing normal things again, I'm planning my trip to New Zealand later this year and really looking forward to it. Now all I need is insurance……
Speak soon
Love Helen
Hi Carol
Sorry, had my sct in august and am recovering very slowly – when I commenced revlimid again at a hundred days post transplant I was still not very well and seem to be at a sort of plateau. I had revlimid as induction treatment and it brought my light chains down to 0 in 3 months and my hb went up from 8 to14 in the same time frame so I'm keen to try it even if it makes me tired as I feel that if it slows disease progression then I must take this route for as long as possible. Of course I might feel better without it but as long as I have no devastating side effects I'm accepting that I'm much better than I was before diagnosis though not as good as I was the week immediately before sct.:-)
It's interesting to hear that you are still tired in the afternoons too, that is my low part of the day too but I'm taking less painkillers now and maybe I'm too impatient….. When was your sct?
Keep in touch
Love Helen
Hello Carol
Happy new year too
I'm just finished the second month of revlimid, (Amelie it is only given as a maintenance dose to people in the uk on the myeloma xi trial)
I'm still very tired and lack energy but ok so far on it – I think. If it slows disease progression I'll keep going with it as long as I can but it's a weird choice, as I don't know what it's like to be post sct anyway! Does that make sense?
take care
Helen
Dear Gill
I'm so very sad for you both. I think a chat with specialist nurse is a good idea, there may be something they can suggest. Stephen must also be feeling very down which might make the dex effect more profound if he has been told he's to be on it permanently. Also there is sometimes an irrational personal withdrawal from the people you love when you hear that treatment is changing again, I know I feel like that at times now but it was worse at the beginning and on the dex.
Have strength
Helen
Hi Liz
I'm not bothered about thinking or talking about it, it was way worse than childbirth but does get less horrible as the time from it goes further away, if that makes sense. I saw it as an essential process to extend my life as much as possible, as, despite all the new stuff coming in for myeloma, we can only have what is the best available right now and so it's a case of follow the instructions, trust the team and do as you are told. Listen to your body and tell the staff if you feel ill or 'different' in any way.
Your dad will still be coming to terms with it in his own way, whatever way he chooses it is the way he wants to handle it. I know it sounds silly but I didn't want to tell anyone what was wrong with me initially, in fact I denied there was anything wrong to a few as I hated the looks of pity:-S. This site has helped me a lot but it's not for everyone, going public with your feelings and experiences can leave you feeling a bit exposed and vulnerable.
You would need to ask the hospital what their visiting policy for children is before taking your little boy along. My personal feeling is not to let him close to grandpa for quite some time as small children are notorious for carrying bugs and liberally spreading them and your dad will need to keep away from infection for many weeks both before and after his treatment. But it is a personal choice. Skype is an excellent idea and maybe practice it a lot before hand. I took my iPad in for just that reason but never used it as I never felt well enough to let anyone see me:-/. ( I needed to retain as much control and dignity as possible, no idea why, perhaps it was something to do with having no control over anything else)
Anyway distract dad as much as possible, tell him he is loved and you are there to listen if he wants to talk but don't be surprised if he never takes you up on it.:-)
Love Helen
Well:………. My experience was pretty awful, I had sailed through the chemo induction phase by comparison and worked until the stem cell collection. I was going to be mostly out patient treated for the transplant. Many people have a couple of bad weeks with it and some have little trouble at all, we are all different.
The high dose treatment went ok, I stuffed my mouth with ice for 10 mins before infusion, continuously through it and for 20 mins after it, this focuses the mind a bit but stops the mouth from getting too sore afterwards. I had a sore arm after the hdt but was otherwise ok. I had all the anti sickness meds known to man and only felt a bit nauseated. Was shockingly tired the day after and had the stem cells back the next day. Then I went home for 3 days coming back on alternate days for bloods (i live close to the hospital) then the next day was admitted again with pain and sepsis and stayed in for 11 days.
I ate and drank nothing, had mucositis and collitis. It was very unpleasant for all of us and one of my children tells me I was totally horrible to them all and kept sending them home:-( I could not bear to have anyone near me, if I'd been an animal I'd have sat in a cave by myself til I felt better then come out, my usual bright and cheery self. I don't generally do 'ill' so it was embarrassing to find myself so poorly.
Anyway, I'm in complete remission now, which is the aim of the procedure and I'm on the myeloma xi trial so I take revlimid as a maintenance drug.
As for do's and don'ts, do take lots of pjs, baby wipes, towels, moisturising cream, a radio, computer, books and magazines and a hat to go home in as hair falls out at about 14days. (mine is now an inch long,hurrah!)
Interesting food and drink afterwards is good but don't get offended if it isn't appreciated:-S and don't worry if he growls at you like an angry bear while it is happening, it is a bewildering experience and no one knows how they are going to be until it happens. I hope this helps, keep in touch, hope I haven't terrified you or upset you too much.:-)
Helen
Dear Dai
Good luck with the trial, I do hope you randomise to the new med. I see you as an intrepid traveller and are setting off on a new pathway, a trailblazer, we watch and wait to see where it takes you…. It is a brave choice keep us posted.
Love Helen
Hi Kay
How did it all go for you today?
Helen
Hey Bridget
Happy new year. Hope this one is good for you. You seem to have done more than me today and I'm only on the revlimid! All I could do today was to pack the Christmas decorations in a box and cook the dinner! Still managed to fall asleep on the sofa again.
Love Helen
Hello Eve
Good news for you at last. What a struggle it has been. Time to take a breath now before the next phase. I found the sct much worse than I expected, I'm 18 weeks post now and not able to stay awake all day yet! Still got lots of gut problems -the unpredictability of which is very unnerving ( and painful!!) but I am in remission and that is a really really great feeling. I hope the next stage is easier for you both than the last one.
Love Helen
