Hi ladies - isn’t it SO good to be able to share our side effects with people who really understand?
Sheana, although my bc surgeon called my health problems “multi-factorial”, they are not specifically related to bc. My gastro had previously said: “Liz, you have empirical problems…” I didn’t like to show my ignorance as I hadn’t a clue what he meant so asked my much brighter husband what the word meant after the consultation. He said: “he just means he doesn’t know how to treat you”. When I got home, I looked it up in a dictionary: “based or acting on observation or experience not on theory; deriving knowledge from experience alone”. Made me feel like a freak.
The problems really arose when I got bc - I was in a flare of Crohn’s, on huge amounts of steroids plus methotrexate and the first Onc I saw told me in no uncertain terms that if I didn’t stop my methotrexate chemo in order to have FEC, I would die of septicaemia - just what I needed to hear! When I asked if he had treated a patient with my concurrent diseases he replied: “No, but I have treated a patient with Crohn’s and psoriasis”. I nearly hit him - he was talking apples and apples, I was talking apples and pears. I also have psoriasis, but don’t need toxic chemicals to control it. He got mad with me when I asked how he would treat me if the flare got worse and he responded, “we will deal with that if it happens”.
He then unbelievably asked me if I wanted to continue the consultation - my first Onc appt to decide whether I would agree to FEC chemo - I fled the room in tears and refused to see him again. I rang my gastro and he said he could not intervene in my bc treatment as it was life threatening, Crohn’s is not - which I beg to differ with, but that’s another story.
Anyway, to cut a long story short, I found a young, female GP who worked one morning a week in the Oncology Dept and she sorted me out with a small daily dose of dexamethasone, but I could not eat any food, not even home made vegetable soup with the solids strained out. She prescribed Fortijuice, a drink that contained all the nutrients and minerals I needed to stay alive, and I sipped this for 4 draining months. Lost 28 lbs, which took me down to 7 stones.
What made me really mad was that neither of my doctors, the Onc nor my gastro, bothered to seek peer advice. I had e-mailed every major hospital in the USA I could think of (Mayo Clinic, MD Anderson, Cedars-Sinai, and the Royal Marsden, Christie’s in Manchester, plus the IBD specialist hospital in Harrow, Middx) , all of whom responded immediately and said they were sorry but they had not treated a patient with the concurrent diseases. I very nearly did not have FEC chemo, but somehow I decided I must have it. My body may be weak, but my mind isn’t.
I spent those 4 months virtually housebound - even the 6 steps to the bathroom from my bed resulted in frequent accidents and twice I was faecally incontinent in the street, to my utter embarrassment. A neighbour found me one day in the local village, sitting on a wall, with tears streaming down my face as my white trousers were covered in faeces, not able to get back to my car. She drove me back to my car, and has never mentioned the episode since.
Well, that period taught me something - that I had to rely on myself and seek out whatever help I could by researching on the internet. Happily, I have had the most wonderful support from my husband, who is 80 yrs this year, disabled and not able to walk more than 50 yds (still trying to get a diagnosis after 6 yrs) and has never made me feel lazy or useless. I now have a young woman from the local village coming in to do the heavy cleaning of our apartment every other Monday and that has been a godsend. I don’t feel guilty about not doing much housework as I know I need to pace myself during the day and usually have a nap in the afternoon. My gastro got me DLA, which helps pay for the help I need, not having any children and only one sibling 600 miles away, who is absolutely useless.
Sheana, don’t hate yourself - try and accept that you have a life threatening illness and you need to do whatever is suitable for you to maintain your life. I don’t wish for one moment to sound glib nor patronising, but for me, having had serious Crohn’s problems for 38 yrs, I have found bc much easier to deal with than knowing there is very little the medical profession can do for Crohn’s. Indeed, my lovely, shy, but gentle bc surgeon said to me, after my lymph node removal; “Liz you will probably die of Crohn’s rather than bc, as we can do so much for bc”.
Didn’t know whether to laugh or cry! I think he was trying to make me feel better about the lymph node spread.
Gosh I could talk to you forever - wish I lived near you (I live in isolated South East Cornwall) and we could meet up for a coffee. So pleased you came on to this forum for support - which is always there from so many people in the same situation as we are.
Now, just got to see an Onc and get an alternative to Arimidex!
Take care all,
Liz.
