[DizzylizParticipant]

Hello to all, I’ve not posted for a very long time, and now it’s with a heavy heart to let you know kev passed away 23rd December 2018, he lost his 8 year fight and succumbed to pneumonia. I still see some familiar faces and cherish the forums invaluable support when we needed it.

Love liz.xx j

[Anonymous]

Dear Liz,
I have only just joined the forum so am not familiar with your journey but wanted to send you my commiserations for the loss of your beloved husband. I hope during the 8 years of his illness you were able to enjoy a good quality of life despite the effects of treatment. I wish you peace and tranquility at this very difficult time and hope you and your family are well given the circumstances.
Best wishes
Cassidy.

[bandityogaParticipant]

I am so sorry Liz, it is really tough trying to live a new life without our husbands. I hope you have a good network of family and friends to get you through this. Keep yourself busy and try to remember the good times.

Love Maureen x

[stanley-1960Participant]

Liz its a long time since i have been on the forum and just noticed your post. I am so sorry for your loss and hope time will heal the pain of Kev’s passing.

In my thoughts,
Stanley

[DizzylizParticipant]

Hello Cassidy,Maureen and Stanley,

Thankyou for your condolences, Maureen sorry to hear of your loss, it is hard after caring for our husbands throughout this terrible disease and the last year it had taken over with no respite and even now I think he’s still in hospital. Now I’m trying to get some sort of life back with my family & friends help, it’s hard but kev would have not wanted me moping, I’ve even looked into doing some volunteering at the hospital? but that’ll be a bit further down the line, finding my feet again and my life!

Stanley nice to hear from you, I’ve just read your post and so pleased to hear your keeping well and enjoying life.

Take care liz x

[patsyannParticipant]

Hello Liz and Maureen,

Liz, I’m sorry to hear of your loss and wish you well in trying to get your life back on track. I too am now in the same situation since my lovely husband David died on 14th March after nearly six years trying to stay positive through several lines of treatment. Like you I sometimes think he’s still in hospital. He did his best to enjoy his life as much as possible during those treatments and would expect me to do the same, but it’s still early for me and I find I’m still exhausted by the last few months.
Maureen, I had been wondering how you were doing a year on from losing Ian and hope that you’re now finding a new normal which you can enjoy.
If there are any members of Team Daratumumab reading this I hope it is working well for you without too many side-effects. David found it reasonably gentle but sadly it just came too late for him to rein in the myeloma.

Pat

[DizzylizParticipant]

Hello pat, so sorry to hear about your recent loss, even after 3 months I’m being kept busy with paperwork sorting through the house and wondering weather to sell and downsize?
But then the next day I’m changing my mind. Kev never had any of the new drugs, they came a little late, he was on his third relapse and had a tandem allogenic transplant from an unrelated donor in 2015, so he got 3 years that otherwise would not have happened. It seems that Daratumumab is looking promising and they soon find a cure for this horrible disease.

Sincere condolences pat

Love take care liz xx

[patsyannParticipant]

Thank you Liz. I feel I’m drowning in paperwork at the moment. After spending most of the last few months at the hospital with David I find there’s so much that needs to be done in the house and garden that I hardly know where to start. At least it should keep me busy, and I think the garden will help. They say you probably shouldn’t make any major decisions for the first year so you probably need to take your time about deciding whether or not to downsize.
We were so pleased when David got approval for Daratumumab as he was past the 4th-line treatment they specify but by the time he started it he was very weak and the myeloma was pretty rampant. It certainly looks promising though so I hope more people benefit from it at an earlier stage and that a cure is not too far away.
Love and best wishes for the road ahead.
Pat x

[bandityogaParticipant]

Hi Pat and Liz It has really tough coping without Ian. Like you I had lots of paperwork to get through and it kept me busy. I had counselling at our local hospice but it was too soon after Ian passing away and 6 months later I was so bad I was obsessing and got put on antidepressants from the doctor which did help a great deal. I am now feeling much better and coming off them. Time is a healer but I will always love and miss Ian.

My family and friends have been a great support to me.
I keep busy exercising, gardening, volunteering at my local church and I also joined an art class. I have been on holiday a few times with various friends but find that so difficult. I have booked a trip to Russia with Cox and Kings in August in a group so really looking forward to that.
There is a group called Wayup online who organise to meet up for coffee or holidays etc. They do help as they know exactly how you feel.
Be kind to yourselves it’s not easy.

Love Maureen x

[patsyannParticipant]

Thank you Maureen. It’s interesting what you say about counselling as it’s been offered but I haven’t felt ready to take it up yet. Sometimes I feel I’m coping quite well and at others I’m all over the place. And exhausted. I suppose it’s early days yet for me.
I’m glad to know you’re looking forward to your trip to Russia. It helps to know that in time I should feel better.

Love, Pat x

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