Hi Vicki and Colin
Just caught up with your thread, I am so sorry to hear your news. You really have been through the mill in the last few weeks, but you still sound strong and thankfully there is the prelixafor, I do hope you get the funding. How long will it take???
I honestly thought that Colin would have been well into treatment by now and on the road to recovery. As we have said before, no symptons or treatment of Myeloma are the same. Sorry cannot offer any advice, not been through it yet!!!!!
Here is to Plan C – Vicki!!!
Take care both of you
Love
Ann and Pete
xx
Hi David
You were so supportive to Pete and I when we first joined the MM site and so needless to say our thoughts and many good wishes are with you!
Take care David
Love Ann and Pete
x
Hi Vicki and Colin
Good to hear your news, lets hope things do start moving now. Hope you are both keeping as well as can be expected. Good luck for the next few weeks and here is to the 24th September!!!!
Pete visited consultant yesterday, they are pleased with all his blood counts, still won't give a date for SCT, but said should hopefully be before the end of the year. Still cannot explain his chest pains or his swollen ankles and legs, but they don't seem that concerned. Pete has an appointment with Radiotherapist on Friday, he is hoping that they are able to give him another blast!!! – just to relieve back pain.
Otherwise he is very perky and as you have often said, sometimes you can forget for a few moments that they have MM!!!!
Take care both of you
Keep us updated
Ann and Pete
xx
Hi Vicki and Colin
How are you both? Any more news on what is happening with Colins progression to SCT and the drug funding?? How is he generally and how are you coping? How nice that you both enjoyed your mom's birthday.
Do you have to automatically come off CDT prior to SCT? Would Colin have to go back on it if the SCT is further delayed??? What is the line in Colin doing at the moment???
No news here really, Pete is just finishing another month of CDT, goes to see consultant on Tuesday for monthly review. He is ok, still has pain in his back and chest – at times – and his ankles and legs are still swelling up most nights!!! He did have the all clear about both of these problems, but still worrying!!
As Pete says, the pain never goes away, always there!!!! He has also had an unexpected letter from the Ongoligist for an appointment next week, we don't know what this is all about, hopefully another zap of radiotherapy to ease the discomfort. As Pete has said, why can't they just zap the blooming thing completely!!! Did Colin have radiotherapy just the once?
Pete just wants to be able to do normal things again!!! Golf especially, but just simple things like DIY would be nice and having a decent night's sleep – lying flat in the bed!!! Also would like his taste buds back, but said not an issue, as he said my food used to taste awful anyway!!!! Has'nt lost his sense of humour anyway, which is a good thing!
It is such an individual illness as everyone on this site says, and OMG, is it ever, so many different ailments,conditions and symptons.
I must admit I get so confused reading the posts, but then again, I suppose until you have gone through the complete journey you don't fully understand.
Ok, let you go Vicki, take care and please keep in touch
Love to you both
Ann and Pete
xx
Hi Vicki and Colin
How are you both!! Silly question I know, but I do hope that you are both bearing up.
I obviously cannot offer any advice, because we have'nt gone through it yet, but Vicki, you know we are thinking of you both!!!
Pete is really good at the moment,and so at times I do forget what lies ahead. I am dreading October/November when it all happens, but hopefully with the wonderful support on this site, it will help. Any idea when they will do Colin's SCT???
Take care the both of you.
Best wishes
Ann and Peter
x
Hello Teresa
Our thoughts are with you.
Take care and God Bless
Ann and Pete
x
Hi Vicki and Colin
Thinking of you both!! Take care and best wishes. Keep in touch.
Love Ann and Pete
xx
Hi Vicki and Colin
Oh, so sorry for you both, after preparing yourselves so thoroughly as well – you did make me laugh about your reaction to the cleaning chemicals, poor you!!! Thats all you needed!!! Hope you are feeling better.
It must have been so upsetting at the hospital, really do feel for you both!!! Excuse my ignorance – but what does gcsf relate to?? I must admit that until I knew Colin was going in, I have tried to ignore alot of things, did'nt really want to know what lay ahead.
Pete's visit to consultant on Tuesday was good, they gave him an ECG, X-rays and took further blood tests regarding the return of the back and chest pains and swollen legs, but could not find anything! They have said it will probably be November for SCT, so not long!! I must admit we have been so impressed with the treatment he has received at Musgrove Hospital so far.
Oh, update on insurance!!! After we provided them with a few more details, they have now decided just to pay my portion of the holiday back, still saying that Pete was undergoing treatment in December!!! This is not the case and so we will not give up without a fight, principal more than anything now!!!
Good luck Vicki and Colin for the week ahead, will be thinking of you both. Keep in touch and do try and enjoy the last day of Summer tomorrow!!! Only joking, rain over the week-end, but really hoping it will return.
Love
Ann and Pete
xx
Hi Vicki
I really hope everything goes ok for Colin. It all has happened so quickly – or so it seems. I feel for you so much!! I will be going through the same thing with Pete in a few months time. At least you will be able to give me good advice!!!!
We have just come back from 7 days in Menorca – not good!! On the third day of our holiday, the pain in Pete's back, that was eased with the radiotherapy treatment came back with a vengence!!!
All I wanted to do was come back home, so frightening to see him so poorly, so far away from home!! His ankles and legs were also swollen, has gone down abit now.
He does have his monthly assessment on Tuesday and hopefully learn more.
Vicki, do take care, you know we shall be thinking of you both!!!
Lots of love
Ann and Pete
xxxx
Hi Tom
So pleased to hear your good news, missed your original post!!!
Take care
Ann and Pete
x
Hi Vicki and Colin
Just wondered how you both were. Are you reading Penny's blog?
Our insurance company has refused to pay out for our cancelled holiday to Turkey.
They are saying that because Pete first went to the Doctors in December, then booked the holiday in January, he is not covered. When he first visited the Doctor in December, it was for rib pain, he was just given pain killers, that was it. He then returned in February because the pain had become unbearable, it was only then that the tests and investigations began.
So they are more or less saying that Pete should have known he had got Myeloma in December and should'nt have booked the holiday in January. He was'nt diagnosed with Myeloma until April!!!!
Pete is very angry and we are going to pursue this, whatever it takes. At the end of the day we got £1000.00 back from the Travel Agent because we cancelled 6 weeks out and so our claim is only £1400.00, peanuts to them, but alot to us!!! We have never claimed before and pay our travel insurance through our bank on a monthly basis – and this is what you get!!!
Oh well, sorry to moan, just needed to get it off my chest.
Again, I hope you both well
Keep in touch
Ann and Pete
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Hi Helen
Thank you so much for your advice, Pete got the insurance , with the company you recommended, for a fifth of the price on all previous quotes.
So we are off to Menorca in 2 weeks time, cannot wait!!!
Thanks again Helen
Ann
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David, Good Luck for Friday
You have helped so many people on this site and made the journey so much easier!!
Best wishes
Ann and Pete
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Hi Vicki
Just read through all the comments about SCT, how helpful and supportive, it must have made both you and Colin feel so much brighter!
How are you both?
Good news here, Pete had his heart tests yesterday, no problems at all, what a relief, at least only got the myeloma to worry about!!!! That surely is enough on its own. The breathlessness is apparently associated to the Myeloma.
Pete had his monthly consultation today and they are very pleased with his blood counts and they expect to get him in for SCT before the end of the year!! (Pete's sense of humour – he said, "well at least it will get me out of the Xmas shopping")!!!! No, joking aside he is obviously very apprensive, like you and Colin.
Like you, really shocked!! Did'nt really think that anything would happen before next year. It has helped me enormously reading all the postive comments on your thread!!
Pete is feeling brighter, still has discomfort at the top of his spine,but he can cope with that. The consultant even commented that he looked so much better today as well. He also answered all Pete's queries, ie bulge on his stomach, taste buds, constipation etc, albiet, these questions have been answered on this site. What would we do without it eh!
Mind you, Pete is grumpy tonight,he has been at home this afternoon trying to get travel insurance for us to get 7 days away in Spain in the next couple of weeks. We both knew it would be expensive, but he was quoted £500.00 for a one off trip. He is desparate to get some sun, and so we may have to 'bite the bullet' and pay up. I think he deserves a good break and some blooming sunshine!!
Let me know all your news
Take care, speak soon
Ann and Pete
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Hi David
Hope you are well. Just a quick one. Pete has been told he can fly, but after a few calls this afternoon to Insurance Brokers (named in Myeloma information), they are all quoting really high prices. I think I remember you mentioning something about holiday insurance some time ago, or was it Tom??
Anyway, we knew it would be expensive, but not so much! Apparently it is because Pete is still having treatment and not in remission.
Any advice?
Kind regards
Ann