Hi, has anyone had this treatment, apparently the E - Epi is red so maybe I can imagine it red wine!!!!! Had my appointment with the Oncologist today, I somehow expected more empathy from a female but maybe the bedside manner is a defence mechanism. Mind you when she started referring to me as "she" and spoke as though I wasn't there, I wanted to shout "I'm here" but for some reason didn't so I sat and fumed instead.
I had heard such good reports about the unit at the local hospital, but found it a really miserable and depressing place, it got worse when there was no quiet room available for me to discuss my treatment with the nurse, we nearly ended up discussing it in the Macmillan info centre which is at the side of the waiting room and open for all to hear and see, now I'm not being funny but I didn't want all these strange sad people listening to our discussions or see me with tears and mascara rolling down my face - not a pretty look - note to me get a waterproof mascara. We eventually found an empty room - with hard little chairs but at least it was private. Not sure why I was upset - I knew what was coming well not the flavour.
I now feel as though I have lost control of my life, that the next 7 months I am going to be at the whim of a system that I don't want to be part of but which I know I have to work with to stop those miserable, mouldy, crappy little cancer cells from returning, I am realising that its going to be waiting for this or that.... have decided I am definately not a patient person. It all seems to be a fait accompli and although you sign the consent form - I don't feel I have a choice.
Oh well, my cold cap is purple - nice colour, I like purple and the sooner I start the sooner I finish. And the dates will fit in with a planned trip to the Christmas Market in Dusseldorf, oh hot chocolate and brandy...yippee.
Would love to hear from anyone who has had this cocktail of treatment.
Well work tomorrow, so time for bed.
Take care all
Carolx
I haven't had chemo but I have spent some time in the chemo ward (having other things done to me) and it struck me as a supportive environment. It was unfortunate you had such a moody b***h as your Oncologist... and that you had to struggle for some privacy. You don't need that sort of pressure at a time when you're feeling so vulnerable. You always think of something 'stinging' and witty to say to these people after they've gone! Going back to the chemo ward; the one at my hospital had comfortable chairs and footstools arranged around the room with small coffee tables placed nearby. If the patient wants privacy there is a curtain to pull around the area, however most of the patients I saw were 'regulars' who knew one another and chatted whilst the treatment was given. I hope when your treatment gets started you'll find a similar set-up at your hospital.
Oh thank you for this. It was a nice bright room with lots of recliner chairs, big windows - didn't spot curtains and there wasn't alot of talking but it will probably be different on the day I go. I think the consultants attitude and the realisation that the next stage was starting ( even though I was keen to get started) just knocked the positive attitude I have up to now, I didn't feel supported.
It was the waiting room that spooked me first, no offence to anyone - but it was filled to the gunnels with sad, grey, poorly people and no one was talking, if they didn't look grey they were wearing it. It just seemed so sad and depressing, I felt sorry for them all but equally sorry for myself having to visit - don't consider for myself ill. I usually try to find the humour in things but didn't get the impression that those in the waiting room would share the joke and if I made a noise someone would say - Ssshh!
I really appreciate your support and kind words, it will be fine.
Carol ~ keep up that attitude! Let the nurses, docs and technicians know you are a person and not 'that patient with cancer'. I did and it made a few of them think, which is what was needed. Working everyday in the same environment causes some ennui no matter how hard you try to stop it. An occassional reminder goes a long way to reasserting your individuality, and in fact I made it my mission to do just that. It was the radiotherapists that needed it most I found . . .
Another thing I refuse to do is 'own' the cancer. I always refer to myself as being diagnosed or treated for cancer, never 'having' it. I read it somewhere on line when I was diagnosed and it really made sense to me. Once again, it meant that I wasn't labeled as a cancer sufferer (treatment sufferer, yes!) atleast in my own mind. It's simple things like that that make a difference.
And finally, I had the red chemo during one of my courses of treatment, although mine was Doxorubicin. Watch out when you go for a pee afterwards ~ it's colourful! But I didn't have the cold cap. I decided against it as a) it increases treatment time radically each time and b) I was warned it probably wouldn't save my hair anyway. And c) as I had hair past my waist at the time, I prolly wouldn't have been able to wear the cap.
So, I decided to do what I've always wanted to and have purple hair!! Of course, it was a wig as my long locks fell out 2 weeks to the day I started chemo. But I loved that wig ~ and it caused quite a stir on several occassions. Hhhmm, must blog about that some time soon . . .
A girl after my own heart, I don't have cancer either I am being treated to prevent it returning. I like the sound of the purple hair, not sure it would go with my complexion - but hey who cares. They have said there is no guarantee my hair won't fall out but apparently it works better on thick hair and although mine is now short it is fairy I mean fairly thick, - we'll see, its worth a try and I will soon know whether it will work.
Thank you for your reply and the encouragement, I really needed the support after yesterday. I have had lovely replies to my blog incuding yours. So today is a new day, I can't change what has gone before but I do beleive in constructive feedback and I am going to provide some to the oncologlist next time I see her.
