Hi Jeff Sorry for the delay. It is at the Chase Hotel Ross on Wye. Thats Herefordshire.
Hi Sonia
Its vicki here I see your friend request but I don’t know how to accept it. Happy to but it doesn’t seem to work on my profile. With all good wishes for the SCT. be positive thats so important. I know how difficult it is for you as the supporter too. This website is great to talk, and seek advice and information. The nurses are great when you have something to check up on.
Hi Gill I noticed this and wanted to post a reply. My Colin passed away last August. There just seems to be so many things that I am struggling to enjoy- we enjoyed cooking, eating, drinking, sport. All of those things seems to be a struggle to do now rather than an enjoyment. I know its still early days and I wondered how you have managed to get that far. I completely get the mince pies. Sights, sounds and smells really can make you feel sad. I cry every time Mum and I go for a cup of tea in M & S because if we were out shopping we would go there for lunch. Best wishes Vicki
Hello Sheelagh
I am sorry to hear of your current situation. My husband Colin had Myeloma. It was a real roller coaster of treatment but the SCT did give him nearly 18 months of remission. Please try to keep positive. I know how difficult it is for the supporter. I was that myself and felt very helpless at times however you have a really important part to play keeping the ship afloat as they say. The specialist nurses at the hospital are great so as has been said before, use them. Also the nurses here on the website are also a brat boost and Colin and I found great support and benefit from them. I can’t hide the fact that Colin passed away last August but the treatments are getting ever more effective so keep plodding on. We went through the whole journey sometimes with worry and sometimes with laughter!. Life our life if you both can and don’t let the myeloma rule it if that possible- we gave that a damn good try. if there is anything that I can help you with please don’t hesitate to contact me. Vicki
Hello All
Its Vicki Heselton here, Colin’s wife.I just wanted to post in to say that I am so glad you are all doing ok. I think of you all very regularly even though I don’t post here now much. I am trying to make effort in other ways by raising funds to support Myeloma Uk and have a fund raising ball scheduled for April 2016.
I am so glad to hear you recovered well from your pneumonia (sorry if I spelt it wrong) Andy and Helen you seem to be travelling about a bit which is great. Peter I do hope the latest round of drugs work well for you and lets hope that drugs fund keeps going!!
Wishing you all the very best of health and happiness over this christmas period.
Vicki xx
Hi Eve
Hello All, Its Vicki Heselton here. Colin’s wife. The knitting thing looks great but it was never my strength. Eve I can’t believe you are still travelling. You are an absolute star. Hello to all of you I don’t post on here much now but I do think of you all. Tom, Helen, Ali’s Mum, Andy G. I do hope you are all doing well. I am doing a fund raising ball in aid of Myeloma UK next April so will keep you posted on that. No good saying how I feel cos its pretty rubbish but I don’t forget how hard this Myeloma trail is, and I think of you all even though Colin’s Myeloma journey is not a trial for him any more.
Wishing you all the very best for Christmas and the New Year,
Vicki xx
Dear all
Thanks so much for your kind words and encouragement. Colin is still very weak but I think that part of that is the emotional stress all this brings. He is eating well though which is good.
One piece of good news. We got married yesterday after 17 years together. In 4 days our friends, family and our local vicar ensured we were able to have what we had been planning, a church wedding, bells, wedding dress,rings, buffet at home and best of all Colin was able to walk back down the aisle and stand through the service. Despite the circumstances it was a very happy emotional day. That will stay with us whatever.mweve had such support and good wishes from people, we don’t know well. Bit like this forum it has brought the best out in human nature. At least we can face whatever as Mr and Mrs x
Hi all
Thanks for your good wishes. It just seems to go from bad to worse. Last Wednesday they took the pic line out. Because Colin’s temperatures were up and down the consultant told Colin, on his own that he had weeks not months to live. We were staggered and still are. I brought Colin home with a bag full of drugs and a foreboding that our time is extremely limited.
It has left Colin getting his house in order so to speak and feeling like he has no time at all.mwe have had distressing conversations with the palliative care team about all sorts of specifics. In all we are both shattered and since Colin has been home he hasn’t been out of the house and has no energy at all, partly I think due to bloods maybe needing topping up but all due to the second lot of news which has left him with no hope.
I am trying hard to keep him positive but I fear it’s getting harder and harder. But I still believe funnier things have happened and there is still hope as long as he is still here and I am still here trying hard for it.
I so wish if it doesn’t work out for us that soon there will be a breakthrough as this damn disease is a conundrum for sure.
Wishing you all all the very best. Will post again soon, I hope maybe with some good news for once as we have the Edward Jenner unit clinic tomorrow.
Vicki and Colin x
Dear All
Can I just say thanks so much for your kind words and thoughts. It is good to know that there are so many people thinking of us. Its an awful situation to be in. There has been no change in the bloods and just lots of transfusions of platelets and bloods. We are both still hopeful but as each day passes and with more temperatures each day it is harder to be so. I do hope that I can get Colin home soon but they wont with temperatures that seem to shoot up out of nowhere,He hasn’t got through one day yet without one, and yet no trace to where the infection is. They are taking his line out today in the hope it might be that.
Once again thank you all for your good wishes, I do worry about posting this org of news as I do realise that we are clinging on to positive outcomes and breakthroughs.
Very best to you all
Vicki
Dear All
The worst seems to have happened. Colin had a bone marrow assessment on Tuesday night as his immune system still wasn’t doing anything. It revealed that his bone marrow was empty of everything good- leaving behind some myeloma cells. Effectively the treatment hasn’t worked. Without the hope of his bone marrow recovering so they could try pomalidomide they have said thats it.
They told us on Wednesday that its unlikely for the bone marrow to come back up to try treatment and they have given Colin ‘months’ to live but sooner if he gets an infection. we re trying to be positive in the vain hope that the slim chance of his bloods recovering happens, but we are told its unlikely. Preparing ourselves for the worst.
Colin feels reasonable in himself but they won’t let him out of hospital; its getting him down, reason being is he keeps spiking a temperature in the mornings, of 38.1 in both ears and then it stays normal all day. They tried putting him on tablet antibiotics but his temperature went up so back on IV. Has anyone else been in this position.
The overall picture is grim.
Vicki and Colin x
Hi Helen and Maureen
Thank you Maureen. I hope that Ians bloods improve soon. Is he well in himself? Sometimes its a slow burn isn’t it. Apparently blood cancers are very complicated (I guess they all are!) but I so hope that Ian will perk up soon and theres a long long remission.
Helen thank you so much for this post, You really boosted me up. I also read it to Colin who I know felt encouraged as he mentioned it several times at the hospital this evening. He’s had the bone marrow assessment today so I do hope we will get some good news tomorrow. And being greedy a boost in the neutrophils!!. Colins seems to drop off to sleep a lot- do you get tired? I get the impression that you do lots of things- what with your holiday home etc. Colins like a wet rag (his words!!). We havemt got anything to measure this by. I hope that this last treatment has hit the MM- we can live with the immune system taking a time to come up. Motivation and positive thinking is the key- both on our shopping list but short on supply!. How are you doing generally Helen. Are you on Pomalidomide for good? What worries me is that the consultant who had a bit of an iffy bedside manner is being really nice to Colin- that worries me……
All the best
Vicki and Colin x
Hi Jeffrey
My colin is the same. He will sleep for England and then will perk up about 9 at night when I am whacked!!. I think tiredness is a standard of this condition plus the side effects of the meds.
Wishing you well
Vicki
Hi there
I don’t have any experience of more elderly diagnosis, but just wanted to drop you a kine to wish you well. I do know of others not in my family, that are pensioners and been diagnosed. They are on maintenance treatment and doing very well- I do hope you Mum will be well. Just take each day as it comes. I think that applies to all myeloma- whatever age of diagnosis!
All the best
Vicki and Colin x
Hi there
my colin was delayed twice. We didn’t realise there could be a delay and it was a real blow and hard to come to terms with as we had psyched ourselves up for what was to come. I do sympathise with you- it was hard. But on a positive note you have got yourself into a position to have an SCT so thats great. Wishing you all the very best with it and a long remission,
Vicki and Colin x
Hi Maureen
Thanks for your message. I haven’t got the hang of doing messages so I thought I would post here. Firstly I did get to the wedding- which was lovely- but very odd going without colin. I had very mised feelings about going but didnt want to let them down. Colin was fine with it.
Colin is still in hospital. Last week was horrible- he was running temperatures, had the shakes and even now I don’t think they know what the root cause is. They can him in case he had sinus issues due to the headache, did the chest again in case they missed anything, nothing in the ear. They even thought it might be shingles but there is no rash- not even now.
AS we speak with headaches are gone, he feels tired and apparently his infection marker is up- but with no temperature, Over the last few days its been between 36. something to 37.4. He is still in hospital. I am very worried though as the immune system still hasn’t come up. I don’t know what that means. They are doing a bone marrow assessment some time this week. I am hoping and praying the treatment has worked and maybe his system is just a bit sluggish. However in my heart I am very concerned as its not moving even with the GCSF.
How is Ian doing 🙂
If anyone has any experience of this Id be very keen to hear!.
I am so worried that Colin will give up if this treatment isn’t working. Also how can there be any options if he doesn’t have an immune system!
Sorry to go on!
Vicki x
