Hi Fran - what a terrible and frightening time you've been through, I'm so sorry. And as you say, thank goodness for your family, that they were there to help you get through.
How to move on from this? Well, I have no professional advice to give, just experience, and I'd recommend finding someone you can talk to on a regular basis for a couple of months about how you felt and how you're feeling now. If you can't afford professional counselling, is it possible that a friend or family member could commit to one or two hours a week just to simply listen to you?
I found that being able to vocalise my fears and occasional anger really, really helped - I didn't want or need any advice, as I know much of it is so subjective, how we each deal with having cancer. In fact the person who supported me in that way has never had cancer, but is simply someone with enormous empathy, which is all I needed.
Sending you a really big hug,
Dear Fran what an awful time you are having hon. I remember you from the Jan 2012 surgery buddies, I am in the chem March 2012 thread now and just had 3rd FEC. I have been very lucky with minimal side effects.
As a nurse myself I am appalled at your treatment and can only apologise and say we are not all like that. I know you are feeling very low at the moment, unsurprisingly, but I would urge you to ring the helpline on BCC for support and ask a member of your family that you feel would be able to insist on a meeting with your oncologist and any other consultant dealing with your viruses. If you insist politely on a proper timed meeting they can not refuse you. If you can get the energy together with whoever is meeting with them write everything down you have concerns about and dont let them finish the meeting until you are completely satisfied with all the answers. Try and keep emotions calm when talking to them, difficult I know but this is your body and you need answers. My thoughts are with you hon, please keep coming on here to let us know how you are and as Sam says ring the helpline. Your Breast Care Nurse should be there for you also and the Chemo Specialist Nurse, they should be contactable via the oncology unit, get them all on board if you can. Good Luck hon with very best wishes Maryxxx
All I can offer is my huge sympathy. I have unusual reactions to stadnard treatments and medications so i know just how you feel and -I get very scared when doctors don´t seem to know how to manage me. I even carry my own bag of antiseptics etc as i am allergic to standard one in use where i live!
Have the Patient Liaison Office in your hospital been any ues to you as this would seem something for them to look into?
I would be inclined to ask for a second opinion from somewhere ike the Royal Marsden and would also ask Macmillan for some info as they must have known other people who reacted badly..I am due to start chemo at some point (only know this much nothing more) and am worried about it so I can REALLY understand how you feel and just want to send you a big healing hug..........
Hope you feel better soon and can get home to a nicer environment
I’m sorry to read that you are having such a tough time at the moment. I’m sure the users of this site will be along to support you soon.
In the meantime maybe you would like to talk to a member of our helpline staff who are there to offer emotional support as well as practical information. The free phone number is 0808 800 600 and the lines are open Monday to Friday 9.00 to 5.00 and Saturday 9.00 to 2.00.
Best wishes Sam, BCC Facilitator
I havent been on for awhile because i have been so ill from my 4th chemo. i am with feb 2012 board. however i was taken in to hospital with d on the 3rd one. i was there for 5 days in isolation. i got better and went home. then 8 days later i went to seethe onc about my 4th , i waited over 2.5 hrs to see this peson who made 5 mins for me asking if i thought i was well enough for the 4th one. i just wanted to get on with it and didnt feel well. so i was booked in for the 17th.
The 17th was awful cold cap horrible.the nurse rushed me. the week after chemo i had headaches,neck aches, memory pro lems. i was admited to hospital on 27th april. it took the drs 5 days of my agony to discover i had viral meningitus, shingles and a chest infection. it has been the worst exerience of my life. The dr,s have been baffled with me. The care has been mixed but the top dr's still as of yesterday were not sure what to do with me. My chemo has been stopped because it almost killed me. i feel that without the support of my family i would not be here today.
yesterday they said different things, there is no follow up plan, i,m left for my brain to repair slowly. i am still supposed to have radio but no one has said that. its been awful.
i am writing on the hospital net at the moment. i am very emtional at the moment because i thought i would die, it was that bad. for 10 dys i couldnt look at the light and they left me in a corridor in bright light.
anyway hopefully i am going home today at 15 days.
if anyone has any words of wisdom to move on from this i would appreciate it.