So much for one day at a time. I lost my temper today. With mum and with dad. I’m snapping at them. Annoyed that I’m saying the same thing to them over and over again and they don’t seem to be listening. I know this isn’t their fault and I feel awful. But when they are asking me to answer questions that only a medical professional can answer it’s hard not to get angry. I’ve emailed dad’s clinical nurse specialist so hopefully she can answer some of the questions I’m not qualified to.
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Oh @Ilona perhaps you are under so much stress and strain, let alone being exhausted, something has to give.
I find a quick apology goes a long way on both sides.
You are right to refer them to your dad’s medical team, they know him and his medical conditions best, it is like us we are not medically trained.
Perhaps help them to write down all their fears, questions and practicalities.
Please be ever so kind to yourselves and @Ilona please do use us to offload on, we understand.
Hi all,
I’m afraid this is the post I knew was coming but never wanted to write.
Last night at 9.15pm we lost my wonderful dad. He died peacefully, completely on his own terms. Our plan was to get him into the hospice for his final days, but in the end he deteriorated so quickly we were unable to. He had actually wanted to die at home, but had agreed to the hospice in order to relieve mum and I of caring duties. In the end he relieved us of those by going so quickly. He was as efficient in death as he was in life.
After he slept all day last Friday he was a little more awake on Saturday on Sunday. But by Monday and Tuesday he was back to sleeping again. On Tuesday night he managed to sit up and stay awake to watch the football, eat a mushroom omelette and a mince pie. Plus a coffee mousse that I had been holding in my hand to eat myself, but he just looked at it and said “Oh go on then”. It made me laugh so much and obviously I couldn’t refuse him.
Then on Wednesday it was clear that he was dying. We had carers round first thing to help wash him, but he hated it. He had fallen out of bed the night before and had severe bruising and by this point he couldn’t eat, drink or speak. The deterioration overnight was unbelievable. We had various people from the hospice, a district nurse and his GP round. We planned to move him into the hospice on Friday, but he had other ideas. By the afternoon/evening he was starting to get agitated so was given sedatives and morphine so he could sleep.
Mum and I had agreed to split the night watching him, with me doing until 2.30am and her taking over for the rest. So at 8.30pm she went off to bed. Dad was breathing like Darth Vader so I popped into the kitchen to get a drink and a bite to eat. Whilst in there I realised I couldn’t hear him any more. He had waited until he was on his own to be able to let go. I know this is really common.
We are devastated, but so glad dad went on his own terms and that he only really had less than 24 hours of being really incapacitated. I wish I had hugged him more and there are things I wish I could say to him. But I know he knew he was loved. And that mum and I will be ok. Which was the most important thing to him.
Finally, I will forever laugh at the fact that the last thing my dad really did without help was last Thursday at 2am he got himself out of bed, into his wheelchair, wheeled into the kitchen and ate a load of jelly out of the fridge!
Thank you to all of you for all your support during this journey. In the end, at 82 dad’s body was just too old to cope with it.
Ilona x
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@Ilona I am so sorry for your loss. I will be thinking of both you and your mum and I hope his efficient passing is of some comfort to you both.
You can still say those things that you wanted to ~ whether it is here, to yourself, or to your dad. As a parent, I know that he will have known without you needing to say it.
The vision of independent jelly eating is just wonderful. I hope that you will both be able to enjoy in time plenty of other happy memories that you both had together.
Take care of yourselves, and just know that if you ever feel like chatting then we’re here. Incase this site becomes too painful for you, I want to personally thank you for what a huge comfort and part of my journey you have been. It means more to me than you will ever know.
Thinking of you & here if you need anything. 
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Oh @Ilona I am so, so sorry to hear that you have lost your had.
@Toadmum has said it all so beautifully.
My lasting memory will be your dad saying ’ Oh go on then’ and grabbing the coffee mousse you had so looked forward to and deserved.
Your dad certainly did do it his way,
Our forum is definitely still here for you to support you in your grief and I am sending you and your mum lots of loving vibes. xxxx
Please do keep posting how you are.
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My heart goes out to you and your mum. I am glad your dad did this final bit his own way and i hope that brings comfort in time. What a fantastic support you have been to them both and I’m sure thatll continue for your mum now. It’s an immense loss and for your dad to know he was loved and that you and your mum will be ok is a job very well done. My thoughts are with you x
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Hi @Ilona
I am so sorry for your loss
Just wanted to send love and hugs to you and your family
Take care x
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Thank you all for your kind words. We are devastated, but thankful for how he went in the end.
Some friends are having a red jelly toast to him before kick-off of the Tottenham v Arsenal game on Sunday in honour of him (we’re all Arsenal fans). So if you’re a football fan and like jelly, raise a spoon to my dad and to everyone and their families coping with this horrible disease.
I’ll probably pop back to the forum every now and then. Just in case my experience can help any one.
Ilona x
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I am so sorry to read this ! Sending lots of love and courage to both you and your mum 
Your dad knew how much he was loved and you seem to have been brilliant through all the difficulties he encountered
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Oh @Ilona I am also an Arsenal fan and perhaps it is fitting they are wearing their away kit on Sunday.
Red Jelly it is then.
Please do keep posting on our forum, be ever so kind to yourselves and we are here for you and your mum xxxxx
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Hi @Ilona
We are an Arsenal family too and will definitely raise a spoon for your dad
Take care xx
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What a good win for the Arsenal today , we raised our spoons as promised for your dad
Am sure he is smiling !
Hope you’re doing as well as you can xx
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This is so lovely @SarahMum. Who is it by? We were looking for readings for his funeral and this could be perfect.
@DottieB it was a brilliant win. I had a big cry at the end. I don’t believe in an afterlife but still somehow felt that dad was watching and cheering. Even my Spurs supporting mates were a bit happy we won today.
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This is by Donna Ashworth and her book ‘Wild Hope’. I love her work, it makes me cry but then gives me hope. She has written lots of books to include poetry about grief.
Look after yourself and your loved ones. Take your time and the sadness will settle. The memories of your dear Dad will remain forever
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Thank you @SarahMum I’ll have a look at her books.
@Toadmum how are things going with you? Have you finished unpacking in the new house?
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Yes, @Ilona a great win and send off for your dad, we all raised a glass/ mug to your dad.
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Thinking of you @Ilona today. Hope you and your mum are both doing as well as can be.
We are unpacked thankfully & I am back at work which in all honesty was somewhat of a relief. I missed the routine and distraction and found I had a lot of time to think about leukaemia and all that comes with it…
Husband is doing pretty well. He’s on day 84 post transplant and bloods were stable on Friday. They are preparing to tailor down his immunosuppressants and there is some talk about whether he is eligible for a preventative chemotherapy drug called Sorafenib. It is off label I understand so he would have to be put forward by day 120 post transplant. It was a different consultant that suggested this to us, not ‘our usual’ who was of the view that it might not be of benefit. We indicated that he would obviously like to take part in anything that can help him to stay in remission long term.
I am finding it difficult to stop my mind thinking about what ifs, and I guess I have to learn to find space with this. He isn’t as bothered by this but any drop or tweak in his numbers and I start to worry. Besides this, all doing good.
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Hi @Toadmum, in my opinion I think it is completely natural to be thinking the ‘what if’s’ etc. etc.
You have kept all the plates spinning at home, looked after your husband and the children, worked and moved house which has kept your mind in the day, so it can run riot and look at your fears for the future. Perhaps give yourself time and be kind to yourself.
I still get anxious before any appointments, tests and results 20 yrs on.
It’s like being a mum I still worry about my son and he is 50yrs old!!!
Sometimes I find posting (and sort of verbalising) how I really am thinking and feeling does help me xxx
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I have this book too! I find the words in these poems resonate in a very unique way. Very cathartic the way we can read something that just seems to ‘land’ in our hearts and minds just at the right time. Making us laugh, cry, appreciate the world around us and ALL the small treasures in life that use to escape our notice……until now xxx
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