I feel for you brother, I have a similar prognosis to your good self, but reading your story I haven’t been through anywhere near as much sh*t as of yet. You sound similar to me in that we don’t care about the odds….we will keep fighting for as long as possible for ourselves and especially our families, it’s tough physically and mentally (I felt some tears as soon as I mentioned my family)…..but hopefully we’ll both keep fighting as long as we have a breath in our bodies
OK mushy stuff done….on to practicalities.. Someone mentioned PIP above, apologies if you now know this, but just in case, you are automatically entitled to claim and receive PIP given your prognosis.. The way to go is to get an SR1 form completed by your cancer care team, we found then liaising with MacMillan was the best route as they have people that do this all the time and know how to get through the hoops. There should be minimal waiting time with an SR1 to hand and once approved you will be paid weekly, tax free. Like me you have probably paid enough tax and N.I. to have your own hospital wing somewhere… and it seems neither of us will be around to claim our state pensions, so don’t be at all worried about taking any benefits you can at this stage, you are entitled so go for it. Also if you get the enhanced level of PIP i.e. 12 points, which you should, you can also apply for a fast tracked blue badge, which will help with parking both generally and on hospital visits.. you can also apply for a ULEZ exemption if you need it. Also once approved for PIP someone close to you can probably apply for carers allowance (as my wife does).
If I can be of any help or support to you in terms of practical financial advice as above etc (we’ve learned a lot over the last few months) or even a simpler stuff such as e-man hugs then please just drop me a line, either here or via PM. I note there are sadly quite a few others on here with similar issues and we and they realise that only when you are in this position do you truly understand what it does to you physically and mentally. I have countless people giving me love and support, it’s fantastic, but occasionally only speaking ( or swapping messages) with someone that has been through the same emotions and walked in your shoes can help.
I am in for my second round of EDP chemo starting tomorrow, due to my ”specialism” it has to be done at the Royal Free in Hampstead so I will be residential, meaning I will have a lot of time on my hands if you do need anything.
Also like me it seems you are also using humour to try and tackle this disease, I think trying to look on the funny side of it all helps keep a positive mental attitude which is important. To that end, I usually have quite a few questions for my Oncologist when I meet him, this time I shall definitely be asking if they have a “swallow nurse”