Hi all,
For anyone who hasn't yet stumbled across it on the site, the info on infodays is at this link:
http://www.myeloma.org.uk/patient-services/infodays/
The London one is £20 per person or £25 if you book less than two weeks before it. The others are £5 cheaper. There's also a price for groups of 3.
It includes lunch, tea, coffee etc and the price is very subsidised.
You can see all the presentations from previous infodays on the site, which I've looked at before. But the programme for London in November looks interesting and quite interactive so I think it'd be worth going along – though I'm not keen on an early start on a Saturday usually!
Hopefully see you there – I'll write nearer the time when I know for sure!
Helen
Hi Tom and everyone,
I could be tempted… I noted it in my diary a while back but have just thought I'll decide nearer the time. It'd be nice to meet any of you who do go!
Helen
Hi Maureen and Ian,
Wow – I bet it feels like ages to you, but I think it's only been a week since I last wrote and you've already kicked out the carer in the evening, got on the case with mobility scooters, been to the cinema, started to learn all the stuff you'll need to do with parking and restaurants etc. Leaps and bounds!! I look forward to reading about you cruising off to Amalfi in the summer 🙂
For me tomorrow is the anniversary of when I had my stem cell harvest – I didn't do an SCT so they'll be having their birthday party in the freezer 🙂 and I'll be celebrating it by a day's work in the office…. And amazed at how 'normal' things can be. I am ashamed to confess that this weekend at a friend's wedding in Somerset I definitely didn't stick to any quota and, er, there might have been a little vomiting and not for medical reasons this time!! Ahem. I think I need to re-learn my limits after a lot of time off drinking. But it was quite funny as a group of us were staying in a cottage and my friend's husband and I woke up at exactly the same time in the night feeling terrible and ended up carrying out synchronised sicking up in the upstairs and downstairs bathrooms. Hmm. Must have been the hog roast… or perhaps the endless drinking. Anyway, I've learnt my lesson now and the wedding was great fun.
Anyway, that was a bit of a digression but my point is that back last June I was bedbound in hospital for a month, and it all began with the first step of even getting to the loo in my room, which felt pretty monumental at the time. Not half as hard as what Ian has had to do, but it's amazing how far you can get with small steps one after the other, even with the odd few backwards steps at times.
I've also just re-started my pilates class at work – and used to sing in a choir too which I found great but is the same evening as pilates so I'll have to figure out what to do about that. Good luck with all those hobbies – but also learning just to do nothing which can be very nice too 🙂
Helen
Hi Maureen!
Yes, the holiday was really great – couldn't ask for more! Lots of sunshine and lovely food and drink and good friends, and I was really positively surprised by how nice Naples was as well as Sorrento and Capri which were just beautiful. We went to Positano for a day trip by boat, not to the rest of the Amalfi coast – so I definitely have an excuse to go back and see the rest 🙂
I'm sorry to hear you and Slim are having such a rough time – it must just feel relentless. But he's so lucky to have you there fighting his corner – well done for getting him to A&E and of course you were right, women always are 🙂 .
Hang on in there and take good care of yourself – I hope there are some breaks in there for you both between all the dreaded hospital trips.
Helen x
Hi Maureen,
What a lot of adjustments you're having to make all at once… Retiring in itself I know normally takes people a lot of time to get used to, I was just at my parents' house the last day or two after my flight back, and talking with them and their friends I learnt that nowadays there are even 'retirement courses' which some people go on to learn how to handle i!! You're having to do all that on top of adjusting to Ian being home and everything being so different and stressful! It sounds like you're doing a lot though, do take some time out for yourself and try to find time just to switch off from it all – you must be thinking the whole time about what is right and what to do and that can be exhausting in itself.
Great though that he's home and that the physio was encouraging – I look forward to hearing about all the progress he makes! Hang on in there through the tricky bit – I always think with myeloma how one of the hard things is there's nobody who can tell you how it will be for you, so it's like flying blind all the time without a map – but you'll get there.
Helen x
Hi Maureen,
I'm so glad to hear that – I do check in on here fairly often although less than I used to, and it was great to see the news of that date coming up and then now that it's finally here!
I can see that it must be hard, and Ian and you must both have all sorts of emotions raging all over the place – but I am sure it will get better and settle down and be much better than it feels like it can be right now. Even after just 4 weeks in hospital I do remember feeling it disorienting being back – and I can also remember taking it out on my mum who stayed with me in my flat the week I came out. But I bet Ian will go from strength to strength and hopefully you'll be able to get over the lumps and the bumps and even laugh about it before too long. You've made it this far and I bet you can make it through this bit too. I expect Ian can do more than he thinks he can but it will take time – I totally lost my confidence and he's been in so much longer.
I'm actually writing from Boston – just at the end of my first work trip which I've done since myeloma and although I was very tired at times it has been good overall. I was also bumped off my return flight yesterday evening as it was full so I've had a weird but quite nice 24h making the most of the swimming pool in the Hilton at the airport, and I probably have a free flight as compensation so have been daydreaming about holidays 🙂
Good luck with the transition time and have plenty more nice rioja moments in between the tough times – and onwards and upwards! (Copyright Tom)
Helen
Hi all,
Again, just in case someone in future is in a similar situation, here's an update on what happened: it turned out that it was indeed a blood clot and it's now gone away due to the blood thinners. My last heart scan was fine, and I saw the cardiologist again on Friday. Provided my next scan in 6 weeks is still clear, I can then stop taking warfarin (as it'll be 6 months at that point which should be enough).
It was probably a side effect of the Hickman line which I had for 6 months. At least the echocardiograms which were part of the trial picked it up.
Otherwise, life is good and I'm enjoying lots of sunshine both at home and abroad!
Best wishes to all of you,
Helen
Aww, thanks Maureen. Yes, I can't wait for the views and the sea and the sun (and the pasta….!) I'll raise a glass to you and Ian when I'm there. I hope things are getting easier and that the civil partnership ceremony goes well (and Andy Murray keeps up his winning streak!) Hang on in there and take good care of yourself,
Helen
Hi Carol,
In my case it was my leg bone it munched, or rather it munched quite a lot of bones but not being able to put weight on my leg without pain was how I found out.
I've no idea but I guess any bone with bone marrow in could get myeloma in it. So maybe even though the collar bone is thin, it has just enough marrow to get myeloma, but not often?! Maybe at least because it was a thin bone it meant it was obvious very quickly, before it gave you any more symptoms or damage…. Though sorry you had to have a fracture to find out.
Sorry too about the CTD – I didn't have that but have had the D of dex and I guess if the C is cyclophosphamide I had that as priming for my stem cell harvest. And yuck, I know what you mean about feeling horrible, so there's no point pretending it's not nasty…. But all I can say is yes from my experience it's better after the first cycle in the sense that you learn the rhythm, which days you feel merely bad and which days you feel terrible, when you can aim to do stuff and when you'll need to be looked after and do nothing… On the other hand I did find some effects got worse over time, as some of it is cumulative and builds up – but it's worth it to get rid of the myeloma, and at least you can start thinking '1 cycle down, only X more to go' etc….
Welcome to the rollercoaster…
Helen
Hi Lizzy,
I can't help on your question but just wanted to say good luck and I hope things are getting easier for your sister. It's all such a shock at the beginning but she's in the right place to get all the help she needs.
Helen
Fantastic news!!! I'm so happy to hear that Dai – back in the game indeed!!
That velcade is indeed a wonder drug. I always forget what a proteasome is, but once you get a proteasome inhibitor on the case your myeloma cells seem to just wither and die!! I had the same, cycle 1 and BAM! very lucky for me as it was the first thing they tried.
I think actually I once saw a diagram showing that the proteasomes are for recycling waste products and if you inhibit those, the myeloma cells can't survive. Quite nice to think of your myeloma cells drowning in a big heap of rubbish…. they bloody well deserve it after all they've put you through.
Good luck for the next cycles. Is there a way to stay on velcade maintenance to stop them ever coming back, if last time that happened after 6 weeks? I feel like I've heard of people in the US on lower less frequent doses of velcade but not sure.
Helen
Hi Tom,
My heart goes out to you, having to do it not once but twice.
Thanks also for finding out what happened: as someone who hasn't had an SCT but has little stem-cell ready-meals parcelled out and on ice somewhere in a hospital in East London, I dread to think of any kind of systemic failure which would mean they were all actually wasted. It sounds like there are at least systems to pick that up, and I suppose human error is inevitable… just so scary when so much depends on it! I'm glad at least that you were able to find out now when you could re-do it immediately, not years down the line.
Good luck with Round 2! You really deserve some sort of extra myeloma medal for the double whammy….
Helen
Ah thanks Wendy, that's just what I needed to hear today. I've been getting a bit sucked into all the 'myeloma internet' recently which is massively helpful in some ways, knowing I'm not alone (whereas at my age none of my friends have anything at all similar to deal with). But it does also set me dwelling and worrying about all the What If? questions. So I think I'll try to take a bit of a myeloma holiday as well as my actual Italy holidays – nothing like making hay while the sun shines eh? You're very inspirational in that way, from reading your blog, so thanks. And yes I love Italy too and have been meaning to go for ages so made a real priority of that this year. First trip is Sicily, second is Naples/Sorrento/Amalfi coast 🙂
That's great that you're still able to run and er, tip tractor tyres 😉 My docs say the same about exercise, although obviously everyone has to know their own particular limits as we're all so individual. Best of luck for being able to do the triathlon, and telling those light chains to bxxxer off.
Helen
Hi Wendy – and Helen and others,
I mainly just wanted to say that I'm rooting for you from the sidelines, and hope the next line of treatment whacks those levels right back down in double quick time.
Wendy, can they do a skeletal survey for you while you're waiting to start? Would help at least to check that there are no new lesions etc.
I looked back at my notes to see what my light levels were, although that was first time not relapse. I had quite a lot of bone damage, hypercalcaemia and some kidney problems, but the earliest record I have of my light chains is only 1270. However, that was a week after I was admitted so may have already come down quite a bit as they'd put me on a lot of steroids and pamidronate for they high calcium. The kidney and calcium stuff seemed to resolve fairly quickly, but obviously the bone lesions are more permanent. Clearly everyone is different, but definitely don't feel bad asking for what you need. I can see how it'd be horrible waiting and worrying about what's going on. And you want to keep your bones in tip top condition ready for your next triathlon/holiday.
Helen
Ugh, sorry you had to deal with that Tom, just what you don't need.
Wise words above. Don't let him – or anyone and what they say – knock you off your stride. You're doing really well (bumper harvest indeed!!) and nearly into the SCT now.
I know what you mean about those fragile moments, particularly when you're physically battered by treatment and waiting for another stage. Give yourself a pat on the back for being normal. And a treat for each stage you get through 🙂 And taxi rides, steer clear of the tube and make a cabby's day I say! You'll have plenty of time to enjoy the delights of the metropolitan line when you're in Complete Remission, jetting off to the airport on exotic holidays etc.
Helen
