[stanley-1960Participant]

Vicki,

I am so sorry to read of Colin’s response to the latest round of treatment. My sincere thoughts are with you both at this difficult time. Your post has prompted a period of  reflection as a fellow sufferer. May you find the strength you need over the coming weeks and months.

Best regards,

Stanley

[PhilipandfionaParticipant]

Gosh Vicki

I am so sorry to hear this. It breaks my heart to read this. I was just browsing the news section full of hope for new treatments, and then the reality strikes again.
I hope that you can get Colin home as soon as possible, and have some quality time with him, and that he stays infection free for a very long time.
wishing you both love and peace and strength.
x

[VickiParticipant]

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

[AliParticipant]

Vicki
I can’t believe I am reading this,my
Heart goes out to you both. I am so sad that you have been given this news. Like Richard says, what about a donor? There’s nothing I can say or do but I am sending a big hug and love to you both.

Ali xx

[DizzylizParticipant]

Hello vicki, not been on the forum for ages and the past few weeks I’ve been following how everyone’s doing, now find myself reading your news about Colin, I do hope you can get him home soon and that infections stay well away and give you both quality time together.

Mine & kevs thoughts are with you both! Love Liz &kev xx

I will put an update on kev under treatment.

[bikerchrisParticipant]

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

[rebeccaRParticipant]

Hi Vicki, so really sorry to hear this about Colin – we are all routing for you both – and please don’t feel this forum is for positive stories only – as there are 2 sides to the coin we are tossing and it is useful for everyone to remember that. I feel in total denial of death as I live my life as normal but it acts as a prompt not to be complacent in our life plans – as difficult as it is. I feel we are all in a myeloma prison camp – when we get remission and escape it sends great positivity and motivation to those still in camp and looking wistfully at the outside. When a member returns to be once again in shaackels it sends shudders and grief through those both in and out of MM camp. Those out, it serves as a nudge to get work/life balance right and re-evaluate priorities. Best wishes to you both,

Rebecca

[janwParticipant]

Hi Vicky,

I am so sad to read about Colin’s lack of response to his treatment. It’s the news that we all worry about receiving during our myeloma struggles. You must be so exhausted and stressed with the range of emotions you are both experiencing at the moment. Hold onto your hope that Colin will be able to fight off the spikes in his temperature and be allowed home soon.

Jan x

[bandityogaParticipant]

Hi Vicki

How is Colin? I do hope they have found the source of his infection and he will be home. Did the doctor’s try different antibiotics?

I have been praying that Colin’s bloods will improve and he will get more treatment.

Take care of yourself.

Love Maureen x

[VickiParticipant]

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

[dickbParticipant]

Hi Vicki,

Very sorry to hear your latest news. As I said before, it’s not over until the fat lady sings, strange things have happened in the past and can again. Be prepared for the following emotions from Colin:

denial, anger, hope/ wishes for the future, depression and acceptence.

He must believe there is hope. Having read your many posts in the past you remind me of my own wife, Colin should be proud of the way you have coped and supported him.

I await the next post

[CarolsymonsParticipant]

Thinking of you both at this difficult time, a time of course that we will all face. Treasure every day with Colin, share your happy memories, remember there are miracles for some. Why not Colin?

Carol

[susieParticipant]

Dear Vicky

I just wanted to add to the many posts following your sad news. I wish you both all the very best. Remember doctors can be wrong so try and keep hope in your hearts.

My thoughts and prays are with you

susie

[andygParticipant]

Hi Vicki.

When nothing was working for me I was tried with DT-pace. It meant a five day stay in hospital whilst I was infused with a concoction of drugs. I think I had five drips going into me 24/7 after the first cycle, usually you have two or three, my bone marrow was nearly wiped out but the myeloma was still hanging around! So that was the end of another treatment for me.

Recently we had a support group meeting, and was repeated at the info day, we were told that BMB’s are a very hit or miss diagnostic tool. Two BMB’s in the same patient can give very different results depending on where the needle hits. I’ve also read that the sternum is a better site for the test.

Not that any of this helps Colin but in my mind it does give hope that his bone marrow may not be totally wiped out and given time it could recover somewhat. Grasping at straws? Maybe but I’ve been doing that since I was diagnosed.

I hope you and Colin can have some quality time together and things improve over time and the worst case scenario doesn’t occur.

Every day is a gift.

Lots of love to you both.

Andy xx

• This reply was modified 8 years, 10 months ago by  andyg.

[VickiParticipant]

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

[Author]

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