Hi Babs
Thanks loads, that's really helpful to know the £6000 / £16000 figures, I had no idea what kind of level they would ignore. Not something I'll have to worry about for a good while, hopefully, but like you say there are always these choices about things like mortgage overpayments vs keeping it in the bank, so it's important to try to be informed. Sorry I didn't reply sooner – I've only just seen this as I'm only popping in here once or twice a month nowadays.
I hope the arrival of the spring sunshine today is helping remind you that winter is nearly over… even though it's freezing and snowing at the same time!! I was sitting in a massive sunbeam this morning, it was lovely.
I'm also about to reply on your post about hair!!
Take care,
Helen
Thanks Helen and Tom,
That makes lots of sense to me and is roughly what I'm doing – work and spend 🙂 as long as I can, finding out what I can sensibly about the future but meanwhile making sure I enjoy today. I just had a great long weekend break with a friend in Liverpool actually, and am looking forward to getting across to France/Italy before too long hopefully. And actually I'm finding that getting out to work is a great distraction, better than brooding. And meanwhile today i have the day off for pamidronate, so my Dad is coming into London to see me so we'll be off to make the most of that.
Thanks again for replying – and I think we're all superheroes to be honest, doing our own little battles against the dastardly MM. If I could draw a cartoon of that, I would!! Tom already has a catchphrase of Onwards and Upwards!
Best of luck Helen in adjusting to the news of relapse and fighting the next battle with velcade or whatever other powerful weapon they give you – I hope you zap it good and proper ASAP and without too much disruption to daily normality during it.
Helen
Hi Tom,
You really are a total hero for working those hours! I am not a morning person and have often been known to turn up late for 10am team meetings, even before MM. I hope you do consider taking some of your pension early or going part-time, even though the benefits system is so ill-suited to the situation you're in. You deserve a rest!! But I realise it's a personal choice and everyone is different and has their own circumstances.
It was really helpful for me to read all of this. It's not something which affects me right now as I was lucky in having 6 months on full pay and then 2 months on half pay, and now I'm back at work. I have spent a lot less while being ill, so for now I don't have any problems. The issue is more the future… I'm mainly being a bit of an ostrich about it but I'm not sure how to approach financial decisions now. My pension is a very far-off prospect as I'm only 33. Obviously I hope I'll stay well as long as possible, and be able to get by on periods of sick pay and maybe working part-time during any future treatment (every 2 years I'm entitled to sick pay again, at least on current rules although they are gradually eroding the civil service terms and conditions so it wouldn't be 6 months in future).
I guess my question is, is there anything sensible I can do to prepare for the future? A stupid question I presume, but once you have myeloma I guess there's no type of insurance you can take out? I have a shared ownership flat (part-rent, part-mortgage, one of these first-time buyer schemes) but I never took out any kind of insurance on my mortgage. Is there a risk ever that if I wasn't earning any more I wouldn't be able to get a new mortgage deal? Otherwise I guess the only approach is (when I no longer had pay) a combination of switching to an interest-only mortgage, getting whatever is possible on benefits, and then relying on family help.
In the meantime, it's a bit hard to know how to strike a balance between 'carpe diem', 'sod money', doing lots of nice things and having holidays, or worrying about the future and trying to squirrel money away for a future rainy day. I don't have much in savings at all – I had none at all before being ill as I was finishing paying off a loan, although I've now paid that off and built up a small amount of savings. I know that some benefits are means-tested, does anyone know what kind of savings you are allowed to have without losing the possibility of benefits?
The hard thing obviously is you have no idea how long your remissions are going to be, what great new treatments will come along that turn this into a chronic disease (let's hope!!) etc. If I knew it were going to be a very short time I think I'd just spend away and not think about it (!) but then again I'd like to think I'll be one of the lucky ones around for decades… in which case I'd be inclined to be very careful with money.
Anyway, I don't know if anyone is in a similar boat or has come up with any answers, but any thoughts or advice very welcome!!
Helen
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 possible.
You must be shattered with all the to-ing and fro-ing. The Samsung tablet is a great idea, I know it really helped me when I got an iPad when I was in hospital. It's amazing what you can do on them!! Also it's probably hard to see when you're close up to it every day but remember that Ian is making progress, even it it's slow – and this will all just be a nasty memory before too long, once he's home and the summer is here!
Hope you're looking after yourself. Thanks for your earlier very kind message to me, by the way. I'm doing pretty well now, I've been back at work for 4 weeks (working usually on about 3 days a week and building up). It's been quite a shock but I feel more in the swing of things now. And I do look back now and see how much progress I've made from the worst times.
All the best,
Helen
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 people.
Helen
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 have down days, it doesn't necessarily mean it will go on like that even if it feels like it.
A couple of things though: 1) after the steroids there are days when you feel very low as the patient, it's basically withdrawal symptoms but very extreme and 2) you may have thought of this or be doing this already but I have found counselling very helpful. First I had it in hospital through the NHS, and then later (and now) I am having it through a local cancer charity. Both times it was a counsellor who specialises in cancer so they have a lot of experience with what we're all just coming across for the first time. It's just a useful space – sometimes Ian won't want to upset you or you won't want to upset Ian so it's another place where you can just say anything without limits and let out some of the emotion. it's not a magic wand obviously, things are still going to be hard – but personally I just think every patient and carer with myeloma should do it as standard! Admittedly everyone is an individual, so different people will take different routes, but it's worth considering at any rate, even if you don't feel like it at first. Often I think the carer thinks they're not entitled because they're not the 'sick' one – but you're having to juggle normal life and seeing people at work and worries about the future and managing finances and stuff, it's really hard. My mum went into over-drive when I was ill, coming into London and driving me to hospital appointments, etc etc etc – she was a really super-mum. But after I stopped treatment she got very depressed to the extent that she's actually been in hospital since Xmas Eve. So with hindsight I wish I'd taken her to go and get counselling earlier – but I just don't think she saw herself as a 'carer' and she was so focused on me at the expense of herself. I don't mean to scare you with that story – probably with my Mum various stressed had been brewing over many years – but I really can't recommend enough going to a counsellor, or looking up support groups local to you, and making sure that you take time out. Sorry to lecture!
Also it sounds to me like you're coping amazingly well, and there's real progress. Things do get better with time, so that's another thing to trust in, just going with the ups and downs but knowing it gets better.
Good luck,
Helen
Helen
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 I just wanted to add the little I know as I had velcade as part of my first-round treatment (along with steroids and a chemo drug called doxyrubicin). Velcade is a proteasome inhibitor, so it works in a slightly different way from chemo. It inhibits proteasomes, and I can't for the life of me remember what they are, but I think they send some sort of signal or do something which gets interrupted and hence stops the myeloma cells from living. It has had very good responses relative to the former generation of chemo drugs. Hopefully you can find some info on the Myeloma UK page or other cancer research charity pages – I know I did and was very reassured. I felt really lucky to get it as a first-line treatment (under a clinical study) as normally in the UK it's only available after relapse. It worked very well for me.
I'm not really able to pinpoint any specific side effects linked to velcade rather than the other drugs I had. One thing to ask others about is peripheral neuropathy as some people get that – I didn't. I did have a lot of fatigue, and in later cycles I had vomiting, but I don't know if that was due to the chemo or the velcade.
Best wishes and I hope you get some more information and a good response to treatment.
Helen
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 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 which took me a while to get over!) and focus on the fact that some people live long lives with it. I've met one who has had 17 years so far and doing fine. Being fit and healthy to start with has got to be helpful.
That's not to say it doesn't take some time to get your head round it all – it does – and you probably can't take any short cuts on the emotional rollercoaster, you've just got to ride it… but it's do-able, from my experience. I know I've been very lucky with the treatment response and everyone's journey is very different. Then again, not so lucky to get it at 33 when I have plenty of better things to be doing!!
All the best (g'day?? can't believe nobody has yet attempted any terrible Australian jokes…)
Helen
PS no need to reply as you have plenty to do! and I'm not on here much anyway
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 pocket.
On a totally other note, I also never had red pee from doxyrubicin which some people seem to talk about. That sounds kind of fun. I want my money back…
Good luck with the dex flying, it is indeed rather odd.
Helen
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 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
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 I'm sure you've found. I'll be in on 28th and 30th January, so let me know if you happen to be around on those days and want to chat. Or just send me a message if you ever have any queries/concerns about St George's experiences that I might be able to help with!!
Helen
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 of posts on here from people with partners, kids etc.
Just a couple of thoughts on feeling a bit isolated… Firstly, do tell your friends what you need, what helps, how to contact you etc. Don't feel apologetic or worry about being demanding. People usually do want to help but sometimes don't know how. If it's difficult to visit where you are, then what about getting onto skype quite regularly? It's amazing how that can feel like being in the same place. Or Facebook… I normally wouldn't have posted stuff about myself so publicly but I found it a very useful way to let people know what was going on, usually in a slightly jokey upbeat way, and everyone sends you lots of good wishes back! It just helps somehow. Like a blog | guess does for some people, but with this it's just for people you know. Secondly, make sure you get a counsellor – through the hospital/NHS or perhaps you'll find a local cancer charity can sort that out – I had 6 weeks at the hospital and then since at a local cancer centre, all free. It might be useful for your mother also… it will be very hard for her to be seeing you so ill. It's totally normal to feel low, or up and down and worried about the future, but it can be difficult to talk about it. There are also lots of books written about cancer – obviously everyone's experience is different, but I've found a lot of them helpful. Whatever you're going through, someone else will have been through it and worse, and have helpful ideas or just make you feel less alone. Again, at the cancer centre I've been to there's a library so I tend to pick up things which look interesting. Thirdly, do still have fun!! Take a break from thinking about myeloma all the time… Watch lots of box set DVDs, read books, eat nice things, treat yourself somehow, go for a nice walk in the park if you're able to be a bit more mobile now. I know it's hard while you're on treatment but there will always be something you can do to feel a bit better.
Best wishes! I'm not on here too much nowadays but if you have any particular questions send me a message!
Helen
