Hi Sarah, it's good that you found our little group who I know will support you in whatever you need. I assume the mask fitting is for radiotherapy? I had 33 sessions with concurrent chemo and it's a rough time but doable and plenty of advice and help available here and on the head and neck forum. I wish you all the best with treatment and do check in now and again
Hi Patrick, yes the mask is for neck radiotherapy. I'm only having 10 sessions then I have a couple of months break then I have 6 months of chemo for the nodes in my chest. They decided to tackle neck first has I have a huge aggressive lump. Everyone I have encountered on the forums seems lovely. I have supportive family and friends...but no one quite understands like others that have or are going through it. I just wish I could fast forward the acceptance part so I don't waste what ever time I may have feeling sorry for myself xx
Don't worry, the acceptance bit will come when you settle into the treatment routine. They did that with me too, now almost 18 months of immunotherapy completed. Have they checked immunotherapy as an option for you?
They have said maybe immunotherapy after chemo. It's incurable. The consultant told me a fews month with no treatment but even with successful treatment average was 2 years....I'm still in shock. I just keep having waves of sadness. Also tight chest which I never know if it's panic attack or the tumour. It's great to see everyone so upbeat and positive on here...I'm just not there yet x
Hi Eddie, I wonder is your GTN spray out of date? I know mine is. I've had angina before and I remember it was more like a sharp pain. This time it's a really dull, heavy pain that has me holding my hand to my chest.
When I had the heart attack before I had been struggling with walking up steep hills. My GP referred me to the hospital and I had a dye test, then I had another one and I asked the nurse if that was usual and she said sometimes they like to look at something in more detail, I noticed that the doctors were looking worriedly at me and one came over and said that there was a bed for me! So I was admitted and in the early hours of the next morning I had a heart attack, how lucky was I? Later I had a stent inserted into the main artery through the left side of my heart. It's called the LAD or nicknamed the widow maker.
Hi Sarah, I'm with you all the way. I saw a programme called On the edge of life a couple of weeks ago and a patient was getting a mask fitted. I had read here in this forum over the years about members having had a mask fitted and at last I can understand what you are going through with the mask. Is it uncomfortable? Hope it does the job Sarah.
They refuse to give a diagnosis here in Germany, possibly due partly to legal considerations but also because they are medically not watertight. People will be along to say hello who have long outlived their prognosis. Just give yourself time now and your'll be focussing on other things before you know it
Hi T, I get a new GTN spray every 2 years, though I've not used it for 5 years, as I'm blessed with a wonderful cardiologist whose cardiothoracic team have intervened quickly with an angioplasty 6 times in the last two years, I'm familiar with the LAD.
Aye my friend Angina pain can vary, you've the most common, I get that one very occasionally, but usually mine's like bad heartburn, which used to be a problem until I was taught the Vagal manoeuvre.
I'm sorry you've had a heart attack T, but someone was looking out for you, having it in hospital, have you had regular coronary angiogram's since?, I have mine between 6 and 24 months as well as regular echo's and stress tests, my aortic enlargement and valve defect are also monitored.
Hey no widow maker talk my friend, the heart , with a good team and treatment regime is tougher than most people think, my ticker has stopped 8 times, at least 3 times I was very fortunate to survive, I have 3 types of arrhythmia and an EF of 33%, and still doing ok.
Bless. Fortunately they now have a gap for nose and eyes so not so bad, but still a bit claustrophobic. It was hot when they mold it on your face. Then had ct scan so they could mark bits for when treatment starts. My first one is 6/7. I just struggled with the whole thing of being in a system I have avoided at all costs..only now I have no choice. Was a difficult day. Also last day with my son, he goes home tomorrow so although we haven't done much I know I will cry when he leaves. Just a blubbering wreck at mo at my pity party for one x
