Hello

Alec,. I see it's nine hours since your post and although my journey is not your wife's I felt I wanted to reply.  Firstly that's an amazing physical response your wife has had and I wish her well with her immunotherapy.   I can't begin to imagine how you're both feeling after being told that she had limited time left.  You get prepared for one thing and it gets taken away...

As regards using tablets/phones there is useful tech out there which can turn speech into text, that might help your wife to talk/ message people without having to type and read.  I think I just googled  it.  My daughter uses it hence my knowledge!  There's probably tech that reads out news and stories too.  The speech therapy dept of a hospital should be able to advise on this perhaps.

As regards immunotherapy I've had two doses of Pembro and certainly feel more tired but no other side effects.  It does seem from reading on this site that people are having good responses to these newish drugs. I'm sure some will reply soon.   It's a lot to take in for your wife right now and her "normal" may suddenly change so it's hard to know (for both of you) what to feel.  There are some free counselling sessions available through Macmillan  but I'm not sure how to access them- another member will hopefully know.

There's also groups on here just for spouses/ partners/carers which might be useful for you.

My heart goes out to you both right now with these changing circumstances. Please do keep us updated. Take care.

Hi AlecEG….I am sure someone will check in with you who is way more experienced and far more knowledgeable than me….I am also quite new to this but have found this forum so helpful and friendly it’s been a bit of a lifeline really…..I have recently started a 6 week course of counselling which I accessed through Macmillan and is facilitated via BUPA….despite life’s many ups and downs cancer was never on my horizon and I have struggled with the diagnosis and thoughts of future which is absolutely normal but very hard to live with….just a couple of things for you really…I was a carer for my mum and also a family member who was experiencing a mental health crisis….just by chance I was referred to the local Carers Centre who were absolutely fantastic at supporting me…offering one to one counselling for me and mental health advice so I could understand better how to support my family member….the support continued for as long as I needed it….perhaps it’s a thought for you as being cared for is tough but being a carer can be really hard too….also I would recommend MIND who have a vast experience of supporting people with wide ranging mental health issues and aside from their terrific website they do offer help via email and phone…..despite all of this I had to be reminded myself that perhaps a chat with my GP would be a good idea…advice which I have now followed….please reach out, there are a lot of resources to help you both through this….take care

Thank you for all your advice, and my wife is speaking to someone this morning who has been through immunotherapy with nearly the exact same diagnosis, so hopefully this will help.

Thank you so much for your kind words and help, and I hope your own treatmenteadsvto a complete recovery for you. My wife is also on pembro. After my initial tweet I did get somewhere. A local rep of 4Sight.org is coming to see my wife next week to offer advice, and someone from a local cancer support group for patients at Royal Surrey and East Surrey (Melanomore) is speaking to my wife this morning. He has been through immunotherapy and had a very similar diagnosis.

Hi AlecEG that sounds a very positive step I think it always helps to speak to someone with a lived experience…sending heartfelt good wishes to you both ….

I'm pleased to hear there is some movement on the support network for your wife, you deserve  some too- there is a site on here for carers and that may support you so you can support your wife!

Take care both of you xx