Getting Palliative Care for Husband

Yes - we are all thinking of you @summer123 X

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I’m glad they are being more helpful now @summer123 . You shouldn’t have to have things made more difficult for you on top of everything else. Wishing you all the best.

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I haven’t posted for a while as my time has been spent caring for my husband. And it is with great sadness in my heart to say he died yesterday, it was almost a year to the day of his leukaemia diagnosis. The last three weeks have been the hardest in my life, my children saw the toll it was taking on me and wanted him to go into a hospice but I wanted him at home.
I must say I had brilliant support from carers, palliative care nurses and McMillan I couldn’t have done it without them.
The experience wasn’t great we had lots of bad moments but we had a few good times. From his best friends bringing beers sitting by his bed laughing and joking, one night the children bought a bottle of his favourite brandy and we listened to his favourite music while he drank a brandy through a straw, it was joyous to see my son holding his hand listening to his teams first game of the season and watching the Womens Euro final. But the best moments were the two of just us talking about our lives together and all the many good times.
I am beyond distraught and cannot think more than a few hours ahead. I am writing this in bed crying and thinking I want to stay here all day but my children have plans and don’t want me to be alone but I would really like time on my own.
In 7 days we would have been married 40 years, he was hoping to make it but he gave my daughter some money and told her she wants us to choose some Ruby jewellery for me. How lovely was he!
I know its early days and I have a long road ahead of grief and loneliness but I told him I would be OK and I will be one day.
To everyone fighting blood cancer or caring for someone who is my heart goes out to you. Its a rollercoaster of a ride but just keep thinking “I can do this” and you will.
Thank you all for the support you have given on this forum I am very grateful. Best of Luck everyone.

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Hello Summer123 - I am so sorry for your loss and all that you will be feeling right now. You have gone through much recently - do know that the love and devotion shown by you for your husband in all that care has been a special gift to him, you did absolutely all that was possible and could have done no more - how fine that it included treasured happy times and moments that can be remembered by all the family and gave him smiles and enjoyment in the moment as it happened. Keep letting us all know how you go these coming days and weeks, you are so right to take each few hours as they come, there is much wisdom in one day at a time and taking that day as it is just as you have been in the last few weeks. Many thoughts with you

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Oh @summer123 I just cannot imagine what you are going through right now.
I could tell through your posts what a special bond, conversations and memories you had and as for your caring, there is absolutely nothing more you could have done for your husband.
I was so struck how thoughtful he was in his last days to give your daughter money for you to get some very special ruby jewellery for your upcoming anniversary.
We, and the Blood Cancer UK support line are always here for you, you are a valued member of our forum family
You say ‘I know its early days and I have a long road ahead of grief and loneliness but I told him I would be OK and I will be one day’ and I am so struck by your words.
You have your anniversary in a week and that will not be easy for you, no type of anniversary ever will be, but we are always here for you.
Be ever so kind to yourself.
Sending you so much love and virtual hugs xxxx

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Hi @summer123. I’m so sorry to be reading this and am sending you and your family so much love.
As @Erica and @Jilly20 said, you have been so amazing the last few weeks under such difficult circumstances.
It is so clear how your relationship with your husband was so strong. You meant so much to each other the fact that he was thinking ahead to your anniversary shows just how much you meant to him.
I understand your children wanting to be there for you but also the need for you to have some alone time. Im sure this will balance itself out and you will get the time you need. Your children sound amazing to and it sounds as though you had some cherished times in the last few weeks
As I read my reply back I notice I use the word ‘amazing’ quite a few times. This word really does sum up so much about your family, the relationships you have and how you support and will continue to support each other in the coming weeks.
Off course the road ahead is going to be hard. Just take each hour as it comes.
You know where your forum family are if you need us.
As the sun sets in Minorca tonight I will raise a glass and remember your amazing husband X

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@summer123
There are no words for the pain that your feeling but know your in our thoughts

I read through blurry eyes
Will raise a glass of water to your hubby

Moment by moment right now
Bless you
:cherry_blossom:

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@summer123
My heart goes out to you. You have been so strong through this journey and shared that strength with others. Now its your turn to be lifted by others and feel of that love and support for you and your family. In time the memories you have made will bring you much comfort im sure but for now know that you dont have to be brave just be you. This is your time and dont forget we are here for you if and when you need us.
Sending love Debbie x

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I am so very sorry to hear this @summer123, I can only imagine what you and your family must be going through and how you’re feeling. I’m glad to hear though of the brilliant support you’ve had around you. We’re thinking of you and are here for you and your family now and going forwards - we’re only at the end of the phone and of course, on this forum as well.

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Hello @summer123. Sending you my warmest wishes. Thank you for sharing with us. Thinking of you and your family. Willow X

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Dear @summer123, thank you for finding the strength to message us here and please know we are all send our sympathies and love to you and yours. You cared and supported your husband so brilliantly throughout the past year. Please know we are still her if you should need any support. Kindest regards Gemma

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Hi @summer123,
I am so sorry for your loss which after nearly 40 years of marriage must be devastating. I can see from your beautiful and heart-breaking message that yhis is cutting you to the depths of your heart and soul. I am glad that you got the support you needed for you, your husband and family to have some joy in his final days.
I have seen 2 people pass away from cancer recently - including my father who died at the end of May - and it is very tough to watch.
I think of my dad every day, but am still very numb. My mother is soldiering on but has up and down days. It’s hard for her to adjust as they’d been together for nearly 57 years.
I feel that there’s little consolation to be gained from the length of time you have had with someone. Life is about sharing your time with people you love and when they are gone, there’s a hole that can’t be filled by anyone else. All you can do is learn to accept that, at your own pace.
Please take good care of yourself. Remember we are all here for you, ready to listen, if you need to talk. again.

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@summer123 I have been thinking of you loads.
We and the Blood Cancer UK support line are here if you just want to say how it is for you just now.
Be ever so kind to yourself

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Oh Summer, I am so sorry to read about your husband. I know everything is so raw just now. Sending you love and strength to get through the coming days. … xx

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Well it is now 12 days since my husband died. For the first 2 days I cried buckets but from the third day I seemed to have an emotional block. I just feel numb, not sad or angry or depressed just nothing. I seem to spend time comforting others or in practical mode organising the funeral. I cannot sleep at night thinking of everything I have to do. People keep visiting or inviting me out saying I can cry scream or rant at them if I want to but seem surprised I don’t. Everyday I get messages saying ‘how has the day been’ or am I coping.
I now feel guilt I am not behaving how people expect. My daughter thinks this maybe a stage of grief and this will change - is it I don’t know, Will I always feel as numb as this.

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Hi @summer123 from my experience their is no right or wrong to grieving and it is very individual.
Your daughter is right that numbness is a well known phase of grieving and often gets people through all the early days of organising and practicalities that have to be gone through.
In my experience lists are helpful.
Just be ever so kind to yourself and sending you lots of virtual hugs xx

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As @Erica has said, there isn’t a right or wrong way to grieve so please try not to feel guilty. The last thing you need is to beat yourself up this. You have so many things to organise and to think about and I can imagine sleep is so very difficult. Just don’t give yourself a hard time. Sending lots of love your way X

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Hi summer, I went through the ‘ feeling nothing ‘phase too when I lost my dad to cancer around about the same timescale as you. I think maybe we go into shock, which protects us and helps us cope with arrangements etc…….But grief is ever evolving and like the others have said we all grieve differently……probably much to soon for you but I follow a grief counsellor on Facebook called David Kessler. He really resonated with me and I found his podcasts and books very comforting……xx

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Hello Summer123 as you see many are thinking of you and have empathy for how things are for you these recent days and times. Yes do know nothing you are feeling is wrong or “not normal” - it’s just how it is for you at the moment - grief is a very personal and individual thing, not an easy thing and a process that will take its course of perhaps a variety of things for you, can only go with how it is for you day by day. Other than loss experienced myself I spent many years in the legal world when I was working, a good chunk in probate work - oh so often we would see dear clients very soon after a loss, sometimes even the day of loss, not knowing what to do and needing to talk, thinking they needed to do some thing practical right away, yet their faces in the “numb, numb shock” situation, all that was needed a cup of tea and for them to talk however they wished to - so many times I have seen that - so you are very normal how you are feeling - my thoughts are with you and keep coming to here to let us know how you are

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Dear @summer123, please never feel guilty. This is your grief and you are within your rights to ‘be’ any way that feels right for you. Time will pass and you will have more space to feel different emotions but there is no rush. The most important things are to reach out when you need, keep your self well and try to rest as you have been through a huge amount prior to your husbands death. Take care, Gemma

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