[LexGeoffParticipant]

Dear all

Is anyone else feeling the same as me – I lost my wonderful husband of 30 years at just 52, eight years ago. I can’t believe how much I am still feeling the pain.

He was diagnosed with MM in 2006 – he received a stem cell transplant, and was in full remission for three years. We were on holiday in the States but he was feeling really unwell, so we curtailed our holiday. Following a full blood test he was rushed to St George’s and plummeted into total kidney failure, blood clot failure and a lot else, including a brain infection. He wasn’t expected to survive the first weekend but fought on for six weeks, bless him, and passed away on 2nd November 2009.

I have received some counselling, but the pain of my loss is still so immense – whilst we didn’t have any children (by choice), I have a large family but no-one knows the extent of what happened during those six weeks.

Is there anyone out there who can relate to this? It would be really good to “talk”.

[animalloverParticipant]

Hi Alexis

Just read your post and am so sorry the pain of losing your husband is still so intense.

I replied partly because what you went through was similiar to my experience a year ago. My husband died in November 2017 after having MM since end of 2011. We too had no children and although the timeframe is different the pain is still there. Your husband sounds as if he was a fighter but the last couple of months must have been a rollercoaster (again very like my situation) and I think that in itself must have been a very traumatic and confusing time for you.

Your post did mention that although you have a large family they didn’t fully realise the extent of what was happening and I was just wondering if there was someone close enough that you could really talk to that would understand and help you start to come to terms with it, although I must admit that it is something you have to go through to fully understand the depths of feelings we are going through.

Alexis as you know we just have to gradually adjust to our situation as I believe you never can get over something like this. I hope you have some lovely friends you can talk to but if you would like to get in touch again I will gladly private message you( i am no techno so you will have to bear with me on that one. Still reading written instructions for tv and satellite remotes my husband wrote out for me!!!!)

Kind regards and keep that chin up

Lynx

[LexGeoffParticipant]

Dear Lyn

Dear Lyn, thank you so much for your thoughtful reply, and I am just so sorry your loss is so recent – I can’t believe you took the time to respond when you are going through those raw first few months.

You have hit the nail on the head on many fronts – I just feel it’s so difficult to talk to someone who hasn’t been through it (and I lost my best-friend of 40 years to cancer the year before I lost Geoff, so really good friends are few and far between).

I had to laugh at your techno bit – I, too, am still trying to read the “where the stop cock is, and which bits deal with which on the electrics”, hand-written by Geoff before he initially went into the Marsden for his stem-cell transplant! If you can work out the PM bit, I would be delighted to hear from you, but where to start?!

With best wishes, Alexis

[mrsbParticipant]

Alexis I feel so badly for you. My mum is poorly with mm and since diagnosis and caring for her for last few months I don’t know what I would have done without my husband of 30 years who is 52 ! I can not imagine what this must have been like for you and you need to talk. I have seen some horrendous things with my mum and been close to the end a few times and if I hadn’t talked about it couldn’t be strong atm to get through. Please talk to someone don’t go it alone. My dad is in denial and my brother has withdrawn from the care – I break down on a weekly basis but you must share your feelings. Take care xx

sara

[bandityogaParticipant]

Hi Alex

My husband Ian passed away in November 2017, 5 years after being diagnosed. He was put foward for another SCT but using TBI instead of mephalan. His first SCT gave him 18 months remission. He had 5 cycles of farydak, dex and velcade and responded well but starting relapsing again. He had no treatment for around 3 months prior to priming but we were told all bloods kidneys etc were fine. We had no FLC chain reading. We were then told after priming that his kidneys were failing and his FLC were 5000. However his kidneys improved and he was allowed home. He started carfilzomib but after 2 weeks he needed a transfusion as he was very anemic. They then said his kidneys ere worse and the treatment wasn’t working and he was put on palliative care. Ian came home and passed away after 10 days with a heart attack. I was with him at the end but it was so quick I didn’t get to say goodbye. No one can prepare you for the loss of your spouse and although I have friends they haven’t gone through it and don’t quite understand.

I miss him every day and my heart is broken. He was such a kind, loving man. I am also receiving counselling as I still cry a lot but it is early days. I have an appointment with a consultant on Thursday to ask questions about the care he received.

This was our second marriage but Ian had no children nor siblings. His poor dad will be 90 in March and missing him so much too. They went to football together. My son and his family live In Edinburgh, 45 minutes from me and my daughter lives in London.

I joined an online group called way up for widows and widowers who know exactly what you are going through. They also meet up in groups for coffee, holidays etc.

Take care

Maureen x

[LexGeoffParticipant]

Hi Maureen, so many very sad stories – I really don’t think anyone appreciates what a horrible disease MM is. You’re at such an early stage that my heart goes out to you.

Thanks for the support group info – I may well look into it. Take care, and thank you so much for your email.

With best wishes, Alexis

[Author]

Posts