Hi there
My first time posting on here. Sadly, my dad is losing his battle with lymphoma. He has B cell lymphoma and it’s very aggressive he was diagnosed in October 2023. Dad has had a rough ride with chemo, radiotherapy, car T therapy and then recently biospecific injections which he’s failed all treatments. I am struggling to come to term with the fact my dad is now terminal and doesn’t have long left to live we’ve been told it could be weeks or months but will happen quickly due to the nature of his cancer. Dad thinks he has months left we haven’t had the heart to tell him it could be weeks as he’s devistated and fragile mentally at the moment. We were told the news on New Year’s Eve last week although we’ve known he has deteriorated for some time now, I still can’t come to terms with the fact he won’t be here soon and that this is the hand of cards he has been dealt in life. My dad is 65 years old and before diagnosis was very fit running lots of runs and a very healthy 65-year-old. It just seems so unfair. None of the treatments have worked for him and his cancer is so aggressive, he has told us that he doesn’t want to die in a hospice and has asked my mum to care for him at home she has been carer for the past year or more during this and has been off work now for 4 months nearly to support him. This is also causing a lot of stress for my mum and myself and my partner the fact dad isn’t considering a hospice might be best placed for him as his pain can be unmanageable at times. My mum doesn’t have a support network here only me and my partner and we both work full-time which has been impossible at times during all of this. I also have to manage my own health conditions which aren’t easy to manage and I’m often exhausted and unwell myself. I help my mum as much as I can but with my dad wanting to die at home now - this is putting additional stress on us that although it sounds selfish - I don’t mean it to be that way it is just very difficult to manage at the moment and dad is adamant he is not going to a hospice. At the moment we have to respect his wishes until the time comes if he gets worse then he might need to go in at a later stage to the hospice when my mum doesn’t cope anymore with the caring responsibilities. My dad has always been a proud man, but he’s also very stubborn and selfish when he first got diagnosed with the lymphoma he left his symptoms for a long time when complaining about pain in his stomach and made a joke about it. He never took it serious and left it for a long time even during his treatments and appointments at hospital he’s refused to go to hospital when he needed to be inpatient and left it till the last minute when he got even worse he would also tell the consultant he felt great when he didn’t and he had bad pain he was hiding. I always wonder if he had caught it early and been more honest with the drs during this battle, Would we still be in this position now? Is there anyway at all I can cope with what is going on better and try and support my mum more than I have been trying to. My mental health has taken a real knock with all of this and I cry often at night thinking about my poor dad and what he’s going through, as that’s when I get most upset when I think about everything before I go to sleep. My brother lives in the other side of the world abroad and we are in the UK, so he hasn’t been able help to help us, it has fallen to me and my partner to support my parents. My mum is desperate for more support from the wider family and my partner and I have really tried our best throughout to a point now where it has made me really unwell needing hospital appointments myself for my flare ups of my health conditions. I even tried to get my Dad clinical trials after his bad news last week about him being terminal and wrote to his consultant but my dad wasn’t happy about this, He was annoyed at me. I consulted his consultant but looking at this stage we are at now and how my dad is looking, he really isn’t well enough for any further treatment and he said he is tired and had enough of treatments sadly. Has anyone lost their dad or mum or recently lost their parent and found ways to cope during this awful time. I know the worst is yet to come with the dying process and I am worried about this especially if he dies at home as this could be quite painful to watch and traumatic I don’t think I’d be able to cope with seeing that and I have bad anxiety as it is with all of this. If he had been in a hospice things would’ve been a lot more manageable. My mum is struggling to manage his pain at home and he is refusing to go to the hospice for an assessment to get his pain under control. It will be quite like this until he isn’t here anymore. Any ways you can think of that might help me cope and better and to help manage my mental health during this awful time would be so appreciated. I really love my dad and it’s really awful to see him going through this, cancer has really destroyed his life and all of our lives also and it’s so sad to see the person that’s your parent be worn down by an illness like this and there’s nothing you and you can visibly see the decline on them every day. Thanks for reading and I hope that others going through the same can get through it with strength and sending love to everyone who is going through this situation at the moment it truly is the worst thing I’ve ever experienced.
Oh @Kerlst I am so glad you have found us and I cannot imagine what you are all going through.
It is so, so difficult when your dad obviously is capable of making his own decisions.
I wonder if your dad would let you contact his hospital nurse, if he has one, or his GP.
There might be help available.
Perhaps you could concisely write all your fears, medical issues, like administering adequate pain relief and also other practicalities.
Perhaps you need to stress the health impacts on you, your wife and especially your mum. You might consider talking therapies.
Be really honest how it is.
If any of your health deteriorates where are you going to be.
You might want to ask what help and adaptions might be .available.
Your mum might need some practical help at home, although this will probably cost
From what I have heard some hospices offer more services than I realised.
The Blood Cancer UK support line is there for you all on 0808 2080 888.
I hope others will be able to share their experiences for you.
It must be so, so difficult for you seeing your dad deteriorating and the fear of what the future will bring.
Perhaps all of you try to make the most of every day.
I am sending you all love and please do keep posting, we are here for you all,
Hi there
I’m going to link you a couple of things for you
Had dad had a care needs assessment as he wants family to support him and in turn you will also need support.
Hi @Kerlst.
I can see you heave recieved some replies and suggestions for support from forum members which is great.
I am so sorry you find yourself here. It must be a really challenging time for you and your family, especially with the addition of your health issues as well .
Please use the support line if you need to talk things through. This may help you with your mental health and talking through support options for your dad.
We are all here to listen whenever you need us.
Please keep us updated on how you are doing.
Sending lots of love X
Hi @Kerlst. How are you doing?
Hi Nichola
Thank you so much for checking in with me, there really truly are some angels in the world and on this site.
I’m doing ok, feeling pretty run down with all the ongoing stress, but trying to take each day as it comes. It’s difficult!! Thanks for asking 
Hi @Kerlst it sounds to me that is all you can do and it really must be so, so difficult.
Please do try to look after yourself as well as you are trying to look after your dad.
Taking each day as it come sounds pretty good to me and it must feel stressful.
Don’t forget the Blood Cancer UK support line is there for you on 0808 2080 888.
Be very kind to yourself and please do keep posting.
Sometimes, just one day at a time is all you can do X
Hi @Kerlst
I’m so sorry you are going through this. I lost my dad to Acute myeloid leukaemia (AML) in September. I’m an only child and my partner and I had moved in with my mum and dad.
We got to the point where treatment had stopped working and he was getting infection after infection, which kept putting him in hospital. But during the most recent ones he had a really bad time, hallucinating on the strong antibiotics. So we made the decision together that even if he got another infection he wouldn’t go back in.
He wanted to die at home but had agreed to go into a hospice to ease the pressure on us. However in the end he got his own way and died at home. I want to reassure you that it wasn’t anywhere near as bad as I was expecting. If you can get hospice at home support do get that. It was invaluable in supporting is both practically and mentally. We had them come in a couple of times a week and then in the final two days a couple of times a day. They administered drugs to help with agitation and pain, which meant he just went to sleep and didn’t wake up again.
We also had a district nurse once a week and carers who can come in up to four times a day. There is lots and lots of support for you at home…in fact sometimes in can be too much. But I would definitely ask if your local hospice do hospice at home.
You will get through this. It’s horrible and I wouldn’t wish it on anyone. But you are not alone.
I’m so sorry to hear this and sorry for your loss. It’s truly awful for anyone to go through this and your right it’s definitely hardest on my mum she isn’t coping at the moment and is taking things out on me often which means I’m a punchbag which isn’t fair when I’m unwell myself. Myself and my partner have tried our best to support them. It never seems good enough. We aren’t in a position to move in to help them they live in a small flat so nowhere for us to sleep and we both work full time can’t be off work as need our jobs to pay our mortgage. They do have hospice at home set up but there isn’t carers coming yet or anything like that though I’ve advised my mum she will need all this especially during the nighttime’s for when my dad declines as right now he’s ok at the moment. It’s very difficult. We don’t have any other family support as our family live in Ireland and my brother in Australia.
For where we were the overnight support was provided by Marie Curie but you had to call and request it every morning. I know things are different everywhere but it was dad’s Clinical Nurse Specialist that gave us all the information and then the hospice gave more info. So do keep asking what support ther is. It can be difficult to navigate and you do have to get your head around who does what, but there is lots of support there.