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
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 feel worse before you feel better!). There are very positive examples out there of people having long remissions, so don't listen too much to the average/median statistics – your experience will be unique.
Very useful advice is listen to your body, take it a day at a time, express your emotions to people, don't be afraid to be assertive about what you want and need.
This site is excellent. Little by little you will become an expert on myeloma! And people will always be ready to listen and to answer your questions. You are not alone in going through this.
Take care,
Helen
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 distant memories before you know it.
I'm mainly having a break from reading about myeloma online (allowing a bit more time for other things in my life!), but will think of you and wish you all the best for the next leg of the journey. And look forward to meeting up for that coffee one of these days 🙂 but obviously when things are easier – important not to rush!
Helen
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 having trips away from London before you know it… And you appreciate them even more!
Helen xx
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 days.
Ah, Phil and I were diagnosed almost exactly the same time… last week of May I was in and out of GP and A&E and at home puking up, 30th May was when I had an orthopaedic appointment and ended up being admitted (my birthday, get out the violins…) and I think 1 June was the 'you've got a blood cancer, not sure which one yet' day, just before the jubilee weekend. But as you say, it does all blur. I don't know which day was confirmation of myeloma day.
Anyway, I'm fully determined to stick around as long as possible (I'm thinking at least long enough to get my civil service pension would be a nice ambitious target 🙂 ) so as my myeloma twin Phil is obliged to do the same, I won't take no for an answer. We should look forward to marking New Year's Day for many years and even decades to come, and without an IV stand in sight!
Helen
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 mark and onto the home straight.
Plus 2012 is nearly behind us 🙂
Helen x
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 it, the weight will all pile back on and then you wonder how on earth to get it off again!
Hx
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 know of different set-ups. It's a tough call to know what to do – I know you've been really happy with the care overall and I have too with mine, but I did find that just once in a while the communications etc between different teams and individuals can break down, meaning the wrong advice or slightly absurd/worrying situations like the nurse asking Phil if he's going home… (after a night in intensive care with pneumonia when they discharged me I had a physio turn up who was adamant I should get off the bed and walk out on a zimmer frame… at that point I hadn't yet had my leg op and had been told by all the doctors that I had paper-thin bone and was on no account to get off the bed – let alone the fact that I had very serious pneumonia. But she was very feisty and keen to do her job and it took ages to get her to see that I really couldn't)…. so you obviously really want to keep on top of it. I don't know if there's any sort of 'patient liaison' outfit at Bart's or complaints mechanism? Sometimes it's worth bringing in someone on your side or to 'escalate' it to more senior doctors. Hard at Xmas and weekends in particular I'm sure, but keep asking different people until someone gives the right answer!!
Take care of yourself too, and hang on in there. At least Phil clearly has an iron constitution! No vomiting during all the chemo and nearly 8 million stem cells sounds like he's a good case to be out in super-fast time.
Hx
PS |I found this link – just in case they're open on Monday morning! or you could try emailing…
http://www.bartsandthelondon.nhs.uk/for-patients-and-visitors/advice-and-support/patient-advice-and-liaison-service-pals/
Thanks Keith for taking the time to write on here when you've been through all the mill and are only just discharged!
Sepsis wasn't something I've heard of, so I've now looked it up. I did know to watch out for a temperature but I didn't really know why – it's important to know about the speed and potential severity of it, plus the fast pulse rate you mentioned.
Take good care over the coming days and have a good rest at home,
Helen
Hiya,
It's Scotty, and her new email address is Scotty@brandmojo.co.uk
Helen
Score!! Great result. Well done those cells.
I also had a bumper harvest in October and I was really knackered for quite a while afterwards, which I'd underestimated… No idea if it's more tiring if you get more but might be the case as the bone marrow has clearly gone into overdrive pumping out stem cells. So take it easy this week 🙂 not running around Xmas shopping… My mum was knackered too and that was just from being there with me!
Hx
Ooh, watch it Tom, I'm 33 – might be worried about looking 40! ;-D
Only joking… thanks loads for all your cheery posts. I don't write often but I've read lots of them.
Onwards and Upwards into 2013 and beyond! 😉
Helen
Well done Phil and his veins! I hope the side effects are all in check after the Melphalan. What a shame about the room… hopefully his room-mates are good company and not snorers!! It's funny how each hospital system is different like you say, but do feel entitled to make sure he'll be shuffled back into a private room when his immune system is low.
Another day down, hang on in there xx
Happy Anniversary from one Helen to another! Great name by the way 🙂
Thanks loads for posting, it does really help as a newbie on here to hear good news. Hooray for another milestone! And I don't know how you've managed to put up with the whooping cough for so long, you must be a real trooper. I've been at home for a week with a cold and conjunctivitis and even that's really got me down – I've just been to the GP and got antibiotics so fingers crossed for a germ-free start to 2013. It's also great to hear that you've been off to New Zealand etc – I've lived and worked overseas a lot for my job and get quite discouraged if I think that MM means no more going anywhere… but it sounds like things are still possible!
I know what you mean about feeling weird posting it… I've had a really good response to treatment but am always conscious that things are at very different stages or happen slower for some people so it can feel insenstive to be shouting it from the rooftops. But my personal celebration as of last week is that having had a stupid plastic tube coming out of my chest for 6 months I had my Hickman line taken out – woohoo! Just a few stitches to fall out and I should start 2013 looking more like a person and less like a patient… just a bit skinhead, or the 'pixie' look as my friends very kindly keep telling me!!
It must feel very emotional having it all so close to Xmas each year. My equivalent day of going into hospital was my birthday, May 30th, so I'll have to find a way to get my head around it in a good way as I don't want myeloma stealing my birthday on top of everything else!
Take care,
Helen x
Hi Megan,
Thinking of you and Phil! So glad he did get a bed – it would have been very frustrating to be all set up and then to go home again. And yes, he needs a private room, one of the 'perks' of isolation…. Do you have to put on a lovely pink plastic apron to go and see him? My nieces were quite keen on those when they came to visit me 🙂
I know what he means about the MRI… all those really loud noises in your ears and somehow because you're trying to stay still it can be hard to get enough breath in. But the pics do look amazing which come out so it's definitely worth it – I said to you I was having one on my shoulder recently and I saw the images yesterday – I can never see what they mean on the x-ray but on that it's like a moving picture from all angles so you can really tell what's going on.
No idea about which is day 1, but I hope it's as few as possible! Sorry you'll be dealing with all this through Xmas but I hope the nurses have some festive cheer and tinsel and before too long you'll both be back home celebrating the start of 2013 and having belated feasts I'm sure. Roll on the spring, I say…
Helen x
