Palliative stage

Hi Lornaann

so sorry to hear that you've reached this stage in the GBM4 journey. We're not quite there yet so there's a limit to what words of wisdom I have to offer here, I'm afraid.

Like you I would have hoped that at this point in the journey that there would be more regular help/support readily available to you. If you feel you need more support, I'd suggest speaking to your GP and explaining how you feel. I can't begin to imagine how scary this part feels.

Have you tried talking to MacMillan about things? The helpline number is below. It might be worth a chat with them and hopefully they'll be able to offer some guidance and support. Or even your local hospice.

I found this link on the main site that might offer some guidance for you If the person you care for is dying - Macmillan Cancer Support

I have pre-empted this stage up to a point. I have very little faith in the NHS and  my husband's oncologist. We've been passed from pillar to post with no consistency. (To date 10 hospitals and 4 separate oncologists who don't appear to read notes or talk to each other) At the very first appointment we were promised all the support etc blah blah blah but those were hollow words. I spoke to our GP a couple of months ago to put my own mind at rest and was was told when the time comes that I feel we need more support that I was just to call them and they would sort out the rest. It put my mind at ease a little but I've no idea what " the rest" entails. I was hoping for more than you appear to be experiencing.

This group is a safe supportive space so please reach out here anytime. There's always someone around to listen who gets it, someone to hold your hand and to offer that virtual hug when its needed. You're not alone here and you're definitely no worrying about nothing.

Sending you a huge virtual hug for now.

Love n hugs

Wee Me xx

Hi Lornaann, 

I have never written in this chat before, only been a reader really, but after going through the experience of palliative care and last month of life with my lovely mum 3 months ago I felt it might be helpful to share what we experienced as, we to, felt a little lost in the woods. I hope it can someway help.

What we experienced sounds pretty similar to your situation basically up until the last couple of days of my mum's life. My mum did have district nurses come visit once a week for the last few months of life but that was a basic visit and to change a pressure wound dressing caused by her mobility issues, nothing I would say felt 'palliative' really.  Then 2 days before my mum passed she took a bad turn and went really really down hill. We got in touch with 111, who in turn contacted relevent palliative care Dr, who came out, after an 8 hour wait to review mum. After he had seen her and explained she was coming towards the end of her life things sort of kicked into gear care wise. He ordered a sedative drug and administer it very quickly, 2 palliative District nurses came out, gave end of life drugs, were very lovely and professional, however to my surprise, did not stay with my mum and it was us as a family who were with my mum in her last few hours of life. I'm not saying from a medical care point of view we necessarily needed someone but it did surprise me when they said they would return the next morning, their last visit being 4 in the afternoon and we were left to sort of just guess what was happening. My mum actually passed only a couple of hours later and we were given a number to call in case this was to happen, which then another 2 nurses came out to do the things they do when checking someone has died and also helping them look settled. Again I don't think my mum necessarily needed more support medically but it was quite an unnerving experience as a family to be left, the support was maybe needed from that point. I do have a friend who also lost her mum to another cancer who I think had a Macmillan nurse stay in the last few days and hours so it might be worthwhile reaching out to one of the charities in that regard. I know my friend said it helped them feel calmer when the end of life nurse was around. I do feel it is something though you have to sort of request or push for. I think part of it is lack of resources within the NHS but also a balance of not overstepping the mark with giving care and support that may not be wanted. The district nurses at one point did offer to bring in a hospital bed, and then potentially take my mum to a hospice where they could care for her more closely but her decline was so rapid they were not longer options for us, but I know this is not how it is for everyone. Basically I think you have to ask for the care if you want it, I'm not sure it's always offered as an option straight away.

Just another note that surprised me was that there was very little input from my mum's oncology team at the end. I had to get in touch with them to let them know she had passed away, they were completely unaware. Again I don't think it's necessarily that they don't want to give it or medically it was needed, but again it did surprise me but I always got the impression with my mum's oncology team that they were so stretched, they were only able to give care in the active treatment stages and therefore when that passes, the responsibility is passed on to the district nurses, but this may not be everyone's experience. 

I hope in some ways this information sort of helps. I hope it is not too much and overwhelming. If you have any other questions just let me know.

Sending lots of warm thoughts and hugs to you and your family. This is an incredibly tough disease on both the person who has it and their family members. I would not wish it for anyone.

Warm hugs 

Becky

Thank you Becky for your reply it has helped a lot to understand how it all works. We had our routine regular visits to oncology, mri, new chemo prescriptions etc, always something happening then its finished no more contact. Let your gp know and they'll take over, we did say my husband wanted to stay at home and that was best for me too. I can see him changing enormously and fear the changes. I don't know what I expected from palliative care, maybe someone visiting now and then and examining/talking to my husband and giving me an idea of the progression of the disease. I read your reply in the middle of last night when sleep wasn't easy and you helped  a lot, thank you for taking the time to write, and I'm sorry for the loss of your mum

Warms hugs to you

Lorna 

Hi Lorna,

I am so sorry I am only just replying, I have a 5 month old baby so things have been abit of a blur, especially without my lovely mum by my side.

I have thought about you and your husband often. How are things? 

Sending warm wishes and hugs to you and your family.

Becky xx

I’m so sorry to hear about what you and your husband are going through right now and how alone you feel. My Mum and I were in the same situation ourselves with my Dad who passed in June this year. 
My advice would be to keep knocking on the GPs door and ask for more support particularly given his instability which can of course be dangerous.
My Dad gradually lost the use of his legs and we ended up having a hospital bed delivered and nurses to help with personal care as it was just too much for Mum and became dangerous in terms of lifting and moving him. Have you explored hospice care? Even just for some respite? At the end my Dad was sleeping a lot and experienced seizures and eventually lost his appetite and went into a coma like state. By then we had him in a hospice so they could make him as comfortable as possible and administer drugs to keep him calm as he did become quite agitated. You will need a referral from your GP for hospice care. 
Don’t be afraid to say you can’t cope or you feel it’s becoming impossible to keep him safe. These are the trigger words that often unlock support. Sending you stacks of strength and love. You are not alone. xx 

Hello,

I have just read these posts and I would recommend getting in touch with the District nurses (via your GP) and ask for anything you might need. My husband passed away in August 2021, he was at home as he had wished and the nurses and the fantastic MacMillan nurse came regularly, especially within the last few weeks of his life. I also contacted our local hospice and they were brilliant, offering night sitters (when possible) and also emotional support. The district nurses contacted the Red Cross too to arrange various equipment as needed as well as a hospital bed.

He also had to have carers come in twice a day and then four times a day towards the end of his life, but they did everything for him that I couldn't in respect of lifting etc. I realise all of this sounds daunting, but it is what life throws at us and that none of us expect. We just have to get on with it as best we can for our loved ones.

My husband also had temper tantrums one minute then very tearful...followed by being back to almost himself. I had to keep reminding myself that he couldn't help any of this, bless him. 

Please get all the help you can as this will help you too....it's good to have someone to talk to who is an expert  and the nurses can provide this. I have to say that all of the oncology team were good too, but when my husband decided against anymore chemo (he had serious side effects) it seems they just gave up on him. I guess they have lots more patients to carry on treating.

Not sure if this is of any help, but please reach out to this forum anytime, it does help.

Take care,