Came as quite a shock to us all when my Grandad took ill. It started as a fall in January and rapidly got worse, more falls more pain to the point that by May my Grandad could no longer walk. The Doctors have been totally useless - many trips to the GP to no avail, adamant that the pain and weakness was all due to "general wear and tear in the knees" even after an X-Ray shows "abnormalities" nothing was followed up and a short stay in a respite centre was suggested! As you can imagine by this point we were al desperate - it was taking three of us to get my Grandad out of his chair (baring in mind until January my Grandad had been fit and healthy - walking his two springer spaniels for miles everyday).
Now at a point of sheer desperation (and after been given oramorph via a phone consultation with a locum GP having been told that a home visit was not necessary by the receptionist) my Grandmother begged to have him taken into our general hospital as the pain was now so bad that my Grandad was literally crying! In hospital several tests were done (no scans though) the pain relief was upped and a dianosis of coccydynia we were all sure this still couldnt be the problem due to the rapid decline in my Grandads health.
After pushing for an MRI scan he finally got one -after over a week in hospital. The MRI showed multiple lesions on his spine and my grandfather was told - alone might I add that they though it may be cancerous and they were going to do a CT scan to rule out the possibility of other tumours. Unfortunately this was the only explanation any of us got - after several days My grandad was sent for a CT scan which came back showing inflamation in several of his Lymph nodes in his abdomen and groin which could possibly be a lymphoma - at this point we were all devastated (What I havent already stated is that my Grandfather has heart disease and had a triple heart bypass almost 20 years ago followed by a heart attack and we already know that surgery is not an option for him).
To cut a long story short after many tests (brain scans biopsy ) the diagnosis of Follicular Lymphoma was given which is a slow growing form of non-hodgkin Lymphoma however the biopsy shows that some of the Lymphoma is aggressive. The next issue is treatment - as I've already stated my Grandad has a bad heart so we were all really unsure as to what he could tolerate. I would like to point out that at this point my Grandads pain is finally under control and with the aid of a walker he can get about although not totally pain free we feel we are getting somewhere. An Echo showed that my grandads heart is functioning at less than 50% -should we be worried about this!?!
Taking everything into consideration they offered my Grandad Chemo R-Chop on a half dose, the first treatment started on Thursday he had half the dose on the first day and then the rituximad the second day - after only suffering with what he descibed as a woozy head my grandad was discharged from hospital with no warning ( he has been in for a month) which what can only be described as a suitcase full of medications and a sheet of paper explaining in medical terminology the findings of all the scans.
We don't know or understand what the side effects are of the chemo - nor do we know whether he can go out and socialise with other people due to the infection risk. At a bit of a loss at the moment this whole thing has been especially hard for all of us, we were assured that they would not give him the treatment if his quality of life would be worse on it than without. Follicular Lymphoma we are told is NOT curable and we can only hope that the treatment will work and he will have a lengthy remission (taking his age into consideration of course). We have been told that if the Chemo doesn't work then there is little they can do for him :/
I apologise for the lengthy post I just feel totally lost - I feel we have had little support from the health care system. Any advise would be brilliant or in fact just to hear some one else who has or has known someone with the same condition. I guess this is a cry for help. Or a way in which I could open up about it all.
