Hi - I was diagnosed with Stage 4 Terminal Cancer in late Autumn 2022. I have primary cancer in the Oesophagus and secondary cancer on my Liver. I had no idea I was even poorly and I just happened to mention to our practise nurse during a routine diabetic check-up, that I was occasionally experiencing a bit of discomfort at the top of my stomach when eating. That triggered a whole series of scans, hospital appointments and the eventual difficult meeting with the Oncologist.
The course of Chemo was quickly engaged with and then rapidly followed up by 3 week interval Immunotherapy sessions which continue for up to 2 years. The only side effects I’m having to live with now is increased fatigue and lack of sensitivity in my finger tips and toes. Not particularly comfortable but nothing to complain about given the circumstances. I’ve also had regular Reiki which confuses me as why it would work but there is no doubt in my mind it has helped. I’m shortly also going to be trying Acupuncture to see if this helps with the sensitivity issues. So big thumbs up from me on relevant supportive alternative medicine as well but would never consider this a substitute to the fantastic treatment I have had to date from the NHS and the support from MacMillan.
I have tried to be very positive so far and was lucky enough at my last scan (second 3 month interval post Chemo), that the primary had shrunk considerably and the secondary was now not showing on the liver.
despite having been so positive, there is always that niggling worry that as the cancer is locked into my system now, that it may well re-emerge again sometime soon or hopefully much later
I have however decided to take my life off semi-hold and as I’ve recently retired from work, get on with things, planning ahead and even taking on a college course.
what will be will be and right now I have no idea where this journey is taking me and when it will end but just now, it’s time for me and my wife to get a decent holiday booked.
LOL no problems, every one just thinks, it does not fill so final, even though it is used some times.
You have done well, and the immunotherapy, is dong its work, i had good results from mine, it is the way forward in a lot of different cancer these days. Kinder than chemo.
I am still on 3 monthly scans, until such time, things change.
My fingers go numb and tingle though only finger tips, but we do what we can to get us threw.
Hi Ellie - great advice on my profile and I’ve fone a copy and paste to update that now as well.
The fingers and toes thing seems to be often referred to as pins and needles and that was fair to describe how things were for a week after each Chemo session.
For me, what this feels like now is that the nerve-endings of my fingertips, toes and just under the front of my feet feel hyper-sensitive to hot and cold, but just under the skin (the epidermis layer) feels numb. Took me a while to figure out the feeling but it’s like half an hour after an injection at the dentist when my mouth feels half numb and half back to normal. My feet generally always feel cold even when I’m assured they are warm!.
You have.earn so much as we go threw, this journey, it is hard, but is doable.
We do compensate for effects, of different treatments,where there is a will there is away.
It is very quit here tonight, but i am sure others will come in.
If you have a certain think you need to know or a topic, always start another thread, then people can see, the topic and if they have an answer can go in.
Once things are more set out easy for every one, you have done well so far, so its onwards and upwards.
Every one is so help full and we all support each other in good times and bad, it is like you have gained another family, threw a bad situation, which really helps, well has me, been here a long while, would not have got this far with out every one.
It is easier some times than talking to family, as we truly know what you are or maybe going threw, x
Hi there and welcome!!
I am incurable stage IV since October 2015!!!! Had immuno therapy also Nivulumab. And see, still here and living!!!
Hi DekH, A warm welcome to the group no one wants to join but once they have, they are glad because you will get a lot of help and support here. I think things were a bit quiet because it was the weekend but others will reply in due course. As you can see by the time, I am a night owl!
I see Ellie has already given you good advice, especially about using Incurable but treatable instead of the old fashioned word of terminal! They have come on in leaps and bounds in creating new drugs for all types of cancer these days. I, like Ellie, have been here longer than even my Oncologist can believe, due to a Trial I went on as a last resort! That drug is now licensed and available on NHS to use.
The other reason you should use the word Incurable is when you get Travel Insurance, (as you are talking about a holiday you will need this) if you say Terminal, they will not give you anything but Incurable and being treated makes all the difference! I am insured with www.insurewith.com and before that with MIA but if you put "Travel Insurance" or "Holiday Insurance" into the Search Box at the top of the page it will take you to a page with lots of advice, just click on any topic you fancy. The other thing is it is best to phone these companies because if you start to fill the form out Online, at some stage it will tell you a phone call is needed and you have wasted all that time filling in a form!
This journey is a roller coaster of appointments etc but stick with it and eventually things can slow down for a bit! Keep in touch!
Love Annette x