Hi everyone, I am new here. Sorry and ramble and lots of questions. I hope this is ok and thank you for reading. Any thoughts, advice or anything would be greatly appreciated.
My dad has stage 4 head and neck cancer. I am his full time carer. My dad was diagnosed with cancer in June and in July he had an massive operation to remove the cancer followed by 6 weeks of daily radiotherapy. We thought it was positive and that the cancer had not spread, but unfortunately in January we found out it had metastasised. He is on immunotherapy but not sure this is working. Next dose tomorrow. I have asked the question about doing immunotherapy and chemo together but we have been told that this is not possible in England as the law does not allow it. Is this right? Surely this cannot be the case!!!! Need options. He is so scared and so am I!
My dad has deteriorated so much in last the couple of weeks, from being able to walk to the shops to now being in bed. He struggles with sitting up as his head feels too tights and heavy apart from being weak as he has not been able to hold is feed, liquid and meds (he is tube fed) but hoping we are turning a corner (still early days). Is there a chair anyone can recommend or anything I can do to make his life more bearable? I have asked for a OT referral but apparently my dad does not meet the criteria.
I am hoping this is just a phase and he will get stronger again. If he does am hoping to be able to take him to Italy (one of his wishes) can anyone advise on a good travel insurance that is not going to cost an arm and a leg.
Also, I have two children and they do know that their granddad has cancer but I also think I need to have a chat with them about how unwell he actually is and the possibilities. When is the right time, when is it too soon? Conscious that one of my children will be shortly doing his A levels and my 15 year old is very sensitive. How do I prepare them?
I am my dad's main carer (I have had to move in with them to do this) as he is tube fed I have been told that the district nurses are not able to come in support with feeds and medications and because of the strong medications he is taking that carers are not possible. It is fine. I can look after him, however what happens if I am unwell or any respite (I have been doing this since August - which I totally don't mind but would be nice to spend some more time with my two lovely boys - not that they would necessarily want that!!!! :-) ) What is out there, how can we get help? Work have been amazing but it is getting more and more difficult to work and look after my dad! What should I expect? How can I prepare? What do I need to do and know?
Finally, am I my last question (for now), power of attorney. We are currently doing this in England but also need to do it for Italy or is there a way to do one and make it applicable to both countries?
Thank you for reading. :-)
Hi TickyB
Welcome to our community, I hope you find it both informative and supportive.
I am Steve one of the community champions here and my experience of cancer is via my wife who has Leiomyosarcoma so quite a different form of cancer to your dad.
I tried searching for chemotherapy and immunotherapy and found a post here where it seems some patients have been offered this but from the comments it seems they declined the option, of course it could be that only certain combinations are allowed and again this is a different form of cancer.. I also found posts about it some Canadian cancer journals.
Has your dad had a needs assessment - see here.They should be able to provide guidance on all sorts of issues and may well be able to recommend chairs etc that might help to make life more comfortable. You might like to ask about a carers assessment for yourself too.
Travel insurance is a big topic here, it even has it's own group Travel insurance forum for cancer patients. In my wife's case her cancer has caused issues with her lungs and as such she has been told not to fly so not something we have lots of experience of.
On the children front, I would be surprised it they had not realised something was wrong and could well be imagining all sorts of things. You might find it helpful to look at Talking to children and teenagers. Our son is 21 now but since we have been living with cancer for over 10 years he has been along on the journey for most of his life. We decided early on to keep him in the loop and were lucky to have great support from his schools too.
On the power of attorney issue - sorry I have no idea.
Hope some of that helps, do post whenever as someone is always listening.
<<hugs>>
Steve
Hi
I posted this in the New to the Community section but I'll put it here in case you don't look back there
Hi TickyB
I hang out in the Head and Neck Cancer group Latchbrook has already linked. Patients on immunotherapy/chemotherapy combos do better statistically so I don't know why you were told it's not possible in England.
Chemotherapy for metastatic head and neck cancer is particularly vicious so maybe his team have concluded that it might harm him irreversibly more than the IT. Why don't you have a word with his CNS.
You should know whether your father's cancer has responded after the next scan
I would explore your local hospice for respite care to give you a break and to cover any eventuality should you be unable. Hospice is not just for end of life. Many patients go in for a short time to get stabilised and to give their carers a break
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
