End of life

Hello Shebu, I’ve just read your post in the melanoma group, popped to your profile and followed that to your post here, gosh that sounds very stalking of me. I’m sorry to read immunotherapy has ceased to work, my immunotherapy for metastatic melanoma is giving mixed responses, so for me they are looking into the possibility of a clinical trial, for an option when things turn more in the wrong direction. I wondered if it was possible for your team to look into something for you, 

When I was first diagnosed back in 2015 and was unwell and not on treatment I was referred to the palliative care team. For me it meant that I had a 24hr telephone number and a quicker route to pain meds, any assessment needed for help and info on local hospice and other supportive organisations. 

I hope you have lots of support as you adjust to any path and actions needed ahead. 

Hi KT, I'm glad you have options available to you.  Unfortunately my oncologist has said there are no clinical trials for me.

I feel quite low since my news and was hoping the palliative care team would at least offer me emotional support to start with but 2 weeks on Im waiting for them to see me I only had initial phone call when I was still too numb to ask questions about their services. I feel very lonely at the moment and wonder if my local services are just slow and they'll be really supportive in the end having read good things about palliative care from other people's posts.

Hello again Shebu. Sorry to hear no clinical trial options. And hearing how lonely you are. I hope you have access to a counsellor and / or good friend or family member to talk to. Online chats are all very well but speaking for myself I don't feel the same connection, support in the moment like in person, or on the phone. Have you tried the Macmillan helpline or melanoma UK helpline maybe? I dont know how hard it is to get through or what the people are like. Not sure if you're open to hear about my situation, let me know if so and I can say a bit. Anyway my heart goes out to you x

Hi Shebu, I’m sorry to hear that, I should have guessed that you would have asked about clinical trials. I remember my first face to face took 2 weeks but I was told that would be the wait, I find when under pressure and feeling numb both speech and the ability to listen become way more difficult. I think Tess73’s idea of the Macmillan support line 0808 808 000 open 8am to 8pm is a good one, it sounds like they can be a listening ear, and I was wondering about Macmillan’s free counselling service that they have with BUPA. I’ve put the link below, it says you can ask for a referral through the support line number above.

https://www.macmillan.org.uk/cancer-information-and-support/get-help/emotional-help/bupa-counselling-and-emotional-well-being-support

MelanomaUk like Tess73 I don’t know what they are like although I have spoken to a couple of the people when at a melanoma patient conference. Their web site also says they can give emotional support and advice on treatment options.

https://www.melanomauk.org.uk but I was thinking for end of life you might want something more specialist.

In my area Sue Ryder run the local hospices and work together with Macmillan, in my sister’s area it was Marie Curie, looking at their website they have a check in and chat service that you might want to find more about. I’ve put the link below as well.

https://www.mariecurie.org.uk

I don’t know if this helps but I hope so it’s nice to have some kind of options even if they aren’t the ones you really wanted.

Hi KT and Tess73, thanks for your supportive advice. It's so silly because I know I can call Macmillan and yet I didn't - I think the whole things has made my head clouded.  I will definitely ring them until I hear from the hospice. Although I have few friends and family around it's hard just to say I'm not dealing with this ok. I know it's hard on them too.

Tess73 I would like to hear your situation please if you are still ok to share I have read your profile as well.

Even though my situation is gloomy it's nice to hear things are working for you somewhat KT and you have options.

Hi Shebu. Nothing we do or don't do is 'silly' I don't think, we do our best, it is hard to reach out and do what is good for us in such a time of crisis. Compassion for oursleves is important, I think.  I often think when i am miserable, why don't i get up and do something, why don't i call a friend etc, sometimes I just cant manage it. Well, why would I be fully capable, i am in a really hard situation.

As for me, I have the grief of the stage 4 diagnosis and limited life and so on as many of us, my biggest grief is leaving my children too soon (aged 31,23, 18 but all are really close to me), I can't bear that I won;t be there for them as they go on in life, won;t be able to see grandchildren or help with them, etc. Also though, my husband of 25 years has reacted badly to my stage 4, been very distant and determined to keep on with his own life the same, and also very angry with me a lot of the time and saying I am demanding, controlling etc when I ask for what I need and / or say I am not happy with his behaviour. This has been going on for more than a year to the point that a couple of weeks ago I and the children asked him to move out, at least for a while, as the stress is bad fo rme and I need a break. He is going away on Sunday for 6 weeks. So I am hoping for a change of heart oin his part in that time (not much hope really) and also that I get some respite and calm, freedom from receiving anger and hostility.

On the good side, today I received my 3 month CT scan results and things are still stable thank god (no reduction, but no new growth) so I get 3 more sessions of immuno and a breathing space. So grateful and also so aware that you have now not got this any more and I am so sorry for you. Sending love.

I also wonder if anyone reading this can resonate with the deterioration of their partner's behaviour like this since their diagnosis? There is much talk of devoted 'carers' and I don;t see much of what I am experiencing but I can't be the only one.

Hi Tess 73. Since I have been on this forum I have come across far to many husbands or partners who have abdicated all responsibility. Always the man. Sometimes they have pulled the plug a week after their wife's diagnosis.

It is disgraceful and unforgivable behaviour.

They are useless but your friends on here are not.

Best wishes. X

Thanks Norberry good to hear there are more in the sense that I'm not alone but appalling that so many have to suffer this on top of their diagnosis, it is a double blow.

Seem to hear this a lot, husbands unable to cope and acting like crap. Unforgiveable.

Glad you have your children to support you.

Stuart x 

So sorry your husband has not supported you. Sounds like you have lovely children who are there for you xxx