Hi Vicki, long time no speak. I have been off the site for a while, but Lena keeps me updated on your news. I have even updated my profile! Sorry to hear that Colin is having a rough time, but keep your chin up, and hopefully they will get his temperature sorted and he can get back home – that will make him feel much better I am sure.
I have 3 monthly check ups now, and monthly pamidranate, but nothing nasty, and we have been making the most of it as you never know what is round the corner.
Good luck to both of you, we are rooting for you.
Love Chris and Lena xx
HI Carol, thanks for your post. It sounds as if your symptoms are similar to mine – after my CDT the readings were rising again, I guess because I had stopped taking the drugs.
It is a slightly scary though starting out on the Stem Cell treatment, but it is the best option we all have at present, and can buy precious years. I have heard of some cases where patients have been in remission for 10 years, and others where it doesn’t work at all, but at the end of the day it is a real chance to be drug free, and for me I felt pretty rotten taking so many tablets.
The Transplant was not as bad as I expected, ok, I had a sore mouth, and was sick when I decided I didn’t need the anti sickness drugs (!), and I was very tired. Apart from that I fared better than some patients, and within 3 months I was virtually back to normal, and that was over a year ago and still going strong.
I don’t know how old you are, but at 52 I am not giving up yet, and have another lot of cells in the bank if I need them, and would definitely do it again.
The doctors and staff are in a league of their own when it comes to caring for you, so take their advice and take your time. My one saviour was that I was allowed to have ready meals from the ‘outside world’ – this was a real help, as eating was not top of my list, and the hospital food was not exactly Raymond Blanc! Go for it!!!!
Good luck and love from us fighters! Do keep me posted.
Chris x
HI Vicky and all! I had my 3 monthly checkup and meeting with the consultant last week, and relieved to say that my PP’s were still stable at 15.5, pretty much as they have been for the last 9 months, although just after the SCT they were higher at about 20. I was pleased as I had been having a few back twinges, probably from overdoing things.
Vikki, I was taking Oxycontin until May, and found that it gave me lots of energy, but then I would feel tired unless I took some more, but then it would keep me up at night. My back has been better, but I have cut down on office work, and only go in on 3 days for quite short days usually, and do some work at home. Driving and gardening is fine as long as I don’t do anything too heavy.
I would say that if Colin is that tired he should cut down on the hours – money isn’t everything.
Some days I come home and just fall asleep on the sofa, but then feel better after an hour or two!
I am so pleased to have my appetite back, and am actually heavier than I have been for about 30 years!
I hope you all have a lovely Christmas
Chris xxxx
Hi Jean and Megan. No real side effects from Childhood injections, but I seem to have a never ending cold and cough. Have started reading Janet and John books, Tip and Mitten, and hope to graduate to Secret Seven very soon. Chris
Hi Carol, I had to check exactly what I did during my collection, but yes, I did carry on working. I had a few days to recover from the chemo, then did my injections in the mornings and went to work. I think I should have taken them in the evenings. I had 2 days up at the collection at Bristol, but the count was not high enough and it didn’t work. With quite a few people the first set of collection is not successful. The days when you go for the collection is very tiring. I then went on a motorbike holiday for a few days, and came back to do the next collection once I had the go ahead for the GCSF. I was probably totally mad, but I didn’t want to miss out on too much ‘normal’ life. If fact there may not be much time for you between collection and SCT as they like to press on pretty fast. I had a panic about getting as much done as I could before hospital as I am self employed, but in fact it is more important to get plenty of rest, and get ready for the treatment. Sorry if I am rambling, but there is so much to say. In the end everybody is different, and reacts differently to the treatment, but good luck, and look forward to getting it behind you. Keep smiling! – Chris
Vikki and Colin, glad to hear you are doing well!
Chris and Lena x
HI Chrissie. I have just read your post, and it sounds as if you have been diagnosed at a very early stage. I am sure it was a terrible shock, but as time goes on you will find that there is a huge amount of support out there, and advice from friends on this site. I was diagnosed 2 years ago with MM and had quite severe symptoms. I was only 50, and like you, enjoying an active life without a thought that things might change. I now have a successful stem cell transplant behind me, and have really not given up anything in my life – apart from not working so hard!
You are now an extra special person, and you will find that you have wonderful family and friends who will rally round and support you.
The main advice I can offer is not to give up, do things today and not tomorrow, and keep smiling! The wonderful scientists are working on new cures every day, and there is a real chance that a permanent cure will be found for Myeloma.
Keep positive and keep smiling!
Chris
Hi Billy,
I was shocked to read how much trouble you were having making your insurance claim. I think the key to this is to have your GP on your side, as they have to fill in the most important part of the claim forms, but they are used to this type of illness and know what the insurance companies are looking for. They need the words 'malignant' and 'invasive' My doctor has also signed forms to the effect that I may only survive for 12 months so I could cash in my pension policies too.
Obviously I have not seen your critical illness policy, but surely MM is exactly the type of illness which is supposed to be covered! I have made successful claims under 2 different policies with no problems.
One thing I quickly realised was that unless you were down to your last farthing, the state or any of the charities will not lift a finger – you are on your own. I decided that as I would never be likely to receive a pension I would claim now for what I could. I have a Disabled Badge, and full DLA. It is a question of telling them what they want to hear.
In your case you were flat on your back in bed – you clearly should have been entitled to DLA and carers allowance.
My hospital has a cancer advice office who were also helpful with the claims forms.
My situation is the same as you, I am only 50 and have kids and a mortgage, and I have been shocked how little real help there is. if you have a few pounds as savings you are considered to be a millionnaire! Once you can't work you are f…ked.
You need to get some more advice, as you should be able to claim under your CI policy definately.
Mine is now paying under a reduced amount per month because I am working 3 days a week, but at least it's something.
Good luck, and keep trying,
Chris
HI Vicky and Colin,
Thanks for the message, we are both well thanks, and looking forward to some decent weather! I have had a horrible flu bug which put me in bed for a few days feeling rough, but apart from a bit of a cough I am much better, and Lena is fine.
How are your blood results doing? Mine havn't really shown much change, staying at about 17 pp's. The consultants havn't said much, and don't seem concerned, but I had another blood test today, and I am seeing the specialists on Friday for the results. I would be interested in how Colin's readings are doing after the SCT.
Sorry to butt into your thread Ann, and hope all still going well with you and Pete.
Love, Chris and Lena xx
HI Ann and Pete,
So glad that you have got Pete home and recovering, it sounds as if you are doing well Pete, and well done for getting back on the beer so soon! I know I felt miles better as soon as I was under my own roof.
I hope that you continue to improve, Pete and that your next check up goes well.
I have just about got over my flu, but I still have a ghastly cough. I had a brilliant couple of days in London, and saw Status Quo at Hammersmith! Horrible weather so I couldn't go up on the bike though. 🙁
Keep eating as much as possible to keep your strength up, and Ann, we hope that you have a fairly restful week recovering from the last few weeks,
Love from Chris and Lena xx
Hi Anne and Pete,
Sorry I havn't been in again, but I was struck down by flu last week with a high temperature, and I was trying to stay out of hospital myself!
Had a few days in bed, couldn't move, but I'm a bit better now.
Lena has been keeping me posted, and I am sorry that Pete has been struggling so much with his bad throat pain. I am sure it will start recovering very quickly now – now many days have you been in Ward 9 now?
I certainly lost a lot of weight too, but it has all come back on now, and my hair is doing well still!
You have done a great job of supporting Pete and it will be no time at all that he will be annoying you back at home 🙂
That Melphalan is powerful stuff, and fingers crossed that it has done it's job and blasted that Myeloma into oblivion.
Keep at it, and send my wishes to Pete for a quick return home. It can't be long now if he is out of isolation. I hope he has got a more fragrant neighbour this time! 😉
Very best to you both, love Chris and Lena xx
Hi Ann and Pete,
Well done Guys, at last those cells are in and you have done the hard bit!
The sweetcorn smell is pretty nauseating, and I felt a lot better one I tackled a shower to get rid of some of the smell!
I hope you get your room tomorrow, it makes a much shorter trip to the loo apart from evrything else!
You have done well seeing a few visitors, pity you can't eat grapes in isolation, I had mountains of them in the end!
I hope you find something that you can face eating. At least the build up's are not too bad if nothing else appeals. You will soon be feeling much better and back on the beer again – something to look forward to in a few weeks!
Lena said you had watched the Rugby on Saturday – I met up with some friends and saw the match in a pub – brilliant game, and the boys are doing great. There was plenty of cheering, especially after a few pints!
It was good to see you last week, you are both doing really well and really positive. Try to keep it up, even if they try to kill you off with the food 🙁 (guaranteed to be mainly horse)
Love from us both,
Chris and Lena xx
HI Vicky and Colin, thought I would drop in and say hi! and hope all goes well at your meeting this week about Colins treatment.
I am getting on fine, and pretty much back to 'normal', my hair is very short, but growing well now, and I am really busy at work and around the house. I still have a small dose of Oxycontin, and the doctors have started me on the weekend antibiotic this week, but apart from that, nothing.(other than Palindronate)
I was due to get the latest PP result last Friday, but they hadn't done the right blood test (grrrr), so I have to wait until next week now. I am hoping my reading will be well down. At the start of December it was 15 I think. I am hoping for some kind of remission, but trying not to think about it too much.
Glad to hear you are both doing well, take it easy,
Love from Chris and Lena xx
Hi Anne and Pete, Sorry I have not been in touch, but I have been feeling good, and have been busy getting back into work. Well done Pete in your bumper cell collection – that Plerixafor is good stuff!
I send all our very best wishes from Lena and I for your treatment tomorrow, and hope it all goes well. I can only say that it wasn't as bad as I feared, and take it one day at a time.
If you do feel up to having visitors, let us know and we will pop in and have a chat. The nurses and doctors are fantastic, and will do everything to make everything go well.
Good luck, from Chris and Lena.
HI Vicki and Colin, I hope all is going ok with you both and Colins recovery. Has his taste come back ok?
Really sorry to hear about Colins Dad, a real blow when you have enough to deal with already. I went though the same thing with my Dad a couple of years ago, and it is a pretty traumatic and emotional time, no matter how infirm or ill they have been, you assume they will go on forever.
Our warmest wishes to you both,
Chris and Lena xx
