Double hit DBCL and end of life experience

Hi Girdy, sorry to read about your wife, sadly some forms of this disease can be hard to beat, I do know the was a small trial of a second type of t-car treatment being tried in the states for those who had relapsed following CD 19 car-t treatment, so very new.

Whilst I cannot share what end of life may be like I Can advise on how to ensure you both get the help, support and care that will be needed, I think much of this is still valid.

As hard as it will be its important to have the conversations to access the help as early as possible so the is a plan in place, the GP practice would normally put an end of life pathway in place so that all the professionals supporting you and your wife are all involved and know what to do at each point in the pathway.

If your wife wishes to remain at home rather than go in to a hospice (should one be available) then your GP and specialist nurse should be able to help put that support in place. Marie Curie nurses may be available to support when special care is needed, especially for through the night care, district nurses will have a role in visiting and administering any drugs especially pain relief should it be needed.Practical things like a hospital bed, commode should be arranged by the hospital or social services. It may well be you will qualify for a care package, as its important that as well as being your wife's carer, you have some quality time to be her husband too.

I would also advise you ring the Macmillan helpline and they know how things are currently working and what impact covid may have as my limited experience was some time ago.

John  

Hi , so sorry to hear about your wife and how things have developed. I can’t add much to the support you have revived from John but I see you have found and posted on our supporting someone with incurable cancer group and you may also find our Carers only group helpful as you will connect with others walking the same journey supporting family through their cancer journey.

It’s always good to talk and the Macmillan Support Services provides lots of information, support, financial guidance or just a listening ear.

Most services are open 8am to 8pm, 7 days a week and it's free to call on 0808 808 00 00 have a look by Clicking here to see what is available and we also have our Ask an Expert section, but do allow two working days for replies from our expert team.

Do also check to see if you have a Maggie’s Centre near you, although their services are limited due to COVID at the moment they are open for some support that may help you both.

Thank you John. We are in contact with a McMillan nurse and are starting such conversations. 
I’m starting to realise the gravity of the care task ahead of me!

Do not e afraid to ask for help and push for it, and I hope you and she have a good team so its not as hard as it can be in some areas, it may be worth discussing a DS1500 form with the macmillan nurse as that should make life simpler when seeking support, especially from the NHS and social services.

You will receive good advice and support in the other groups and from others who have been in your situation and posted the advice they have shared is: make sure everything is said that needs to be said, make the most of the time you both have and ensure you both have time and caring does not prevent that from happening.

We are hear to chat and listen if you you need us, but do use the groups you find most supportive for you both.

Hi Girdy, I’m also new to the group, or at least new to posting here. We too have just had unsuccessful Car-T treatment. My husband was diagnosed with DLBCL 4 years ago. We are in the unique position of him being stuck in Switzerland (where he works & now due to Covid) and I am stuck here in the UK with our 3 children. We await a forward plan from oncology this coming week. Although I cannot offer any specific advice on the coming months I just wanted to say that, for what it’s worth, you are not alone. My memory of going through similar circumstances when I was younger and my Father inevitable died following a terminal illness was like entering a fog and things happened just as they did. Events often take over from planning and you just deal with things as they arise - and you do just cope with thing because you have to. I’m hoping you and your wife get all the support you need and sending you courage and heartfelt wishes. 

Hi

Such a difficult set of circumstances you find yourself in Jinlou- you must be desperate to be reunited with your husband. As a carer, I’ve sometimes felt a little on the sidelines when my wife has been an inpatient during COVID and this is bound to be far more acute for you. My wife is  reaching her end of life now and is too poorly to access a trial on offer so we are just taking a day at a time. Surreal really as some days she is looking the picture of health and then desperately tired and weak on others. We manage to laugh still and reflect on positive memories.

I hope you can be reunited with your husband soon and plan a way forward with the next stage of your life journey. Best wishes