Thanks for letting me know where abouts you are, there are certainly differences in all health authorities. I can understand your jitters it is a frightening prospect putting you life in their hands. Go with your gut instinct about chemo, from the other ladies on this site, chemo is doable but not easy going but as the advert says ‘youre worth it’. Still havent heard anything from onc yet but it should be this week. Good luck for the 21st i’ll be thinking about your and sending a cyber hug and hand to hold.
I will keep you up to date.
Hi Debbie, havent heard from onc yet but will let you know on this thread. How are you?
Just had a phone call from onc, they have reconsidered my treatment and are now offering to give me chemo. Thanks to all who replied on this thread you have all been so very supportive.
Gill Mc
ps will keep you all posted as and when I start xxx
Lisa - keep me uptodate with your chemo schedule good luck on the 21st, don’t know when I start bc nurse rang me this afternoon as she knew the onc was ringing me, she thought i might start next week, hope so the sooner the better.
I keep having this awful nightmare that cancer in the shape of gremlins are running round my body and duplicating (funny I know in the cool light of day) but terrifying in the middle of the night. Really feel like the weight of the world has been lifted of my shoulders and feel I can know really do something to get rid of the b…ds.
Glad you have had your treatment sorted Gill. This thread has got me really worried. I was 43 at dx with, they said, a 28mm grade 1 tumour. This turned out to be 20mm grade 2 tumour. I have repeatedly asked why I wasn’t offeref chemo, to be told that I didn’t need it as it was highly ER+. I had clear margins and lymph nodes but am now plagued with earache and pain in my collar bone. I am waiting to see Consultant at Hartlepool hosp re earache which they think is connected to jaw pain and they think is TMJ ( temporal, mandible joint I think ) problems but I have been waiting since November 2007. Nice guidelines say that I have to be seen by 21st Jan 2008. I rang today to be told that they had a big back log and were trying to open another clinic. I feel really scared that the cancer has spread in the 15 months since dx…
Sorry you are still having problems, keep on at them and make sure you get answers. I believe we all know our own bodies and can tell when somethings not right. Sorry also that this thread has worried you everyone is different and dx not always the same. Do you have to see another consultant or is it the same one you had with bc?
Take care hon keep in touch and let us know how you get on.
It’s Prof Avery who I don’t know. Apparently he is the “face man”. I tell myself that it is not related and also that my treatment was decided by a team of people not just one person and I don’t even want chemo. 15 months down the line is too late anyway. You just can’t help worrying can you? I did read somewhere that they now believe that Tamoxifen protects women with my dx just as effectively as chemo. I think I was prob border line. I saw Dr Rathmell as my onc who assured me that chemo wasn’t necessary so I will just have to assume that he knows best. Anyway. Good luck with your treatment. Do you know when it starts?
I think your correct because you were highly ER+ the Tamoxifen was enough. I was only slightly ER + and so was borderline thats why they have offered me both chemo then Tamoxifen for 5 years. I hope you get your app asap but I am sure you will be fine try not to worry (easy to say I know).
Had big wobbly last night and had to take a diazepam to calm down. Also didn’t want my 17 year old son to see me crying. Have decided to accept treatment plan and be grateful that I didn’t need chemo. Think earache and jaw pain is stress related due to too much jaw clenching and collar bone pain is muscular caused by too much shopping over Xmas. Feel better today anyway. Hope you all are too
When I get stressed I tend to grind my teeth not that I am aware that I am doing it and it is even worse when I am asleep, not that I sleep very often at the moment - always looking for a positive. Did you find that your jaw stopped hurting after you took your tablet?
Gill - the worst bit is always the waiting for something. I can honestly say that the worst part of my chemo was the trip to hospital for the first treatment. You don’t keep reading that the chemo is “doable” for no reason, it really is “do-able” and I have had many more good days than bad days. There are some good tips on the chemo board - if you scroll back a page or two, there’s tips on coping which I found very helpful. Good luck with everything and remember that you are not alone in all this. There are many of us here going through just the same emotions and worries and you will find lots of support here from people who understand what it is like.
Hi
Its good to hear every-ones comments as i too am feeling very nervous, been waiting ages for chemo to start and was worried that things were not moving quick enough due to infection and now the time is here to start i am still worried. I start 6 sessions of FEC on Fri and its the not knowing how we are going to be thats worst.
Love Sandra
How far into your treatment are you Nicola? Sandra will be thinking of you on Friday and send a cyber hand to hold. Let me know how you get on. You are all right waiting is the worst bit I have been on this rollercoaster since dx end November but everything ground to a halt over the christmas and new year period I really thought hospital had forgot about me… but this time next week (Sandra and Lisa) and I will have one down 5 to go. Yipeee… god i am so sad.
I went to hospital today to sign the consent form and have a tour of the chemo unit. The chemo nurse was lovely and totally reassured me that I was doing the right thing and i will cope. I have got on a clincal trial so I will have my epi every 2 weeks not every 3 weeks with an injection of GCSF in between to boost my white cells and prevent some unwanted side effects. This will reduce my treatment down from 28 to 24 weeks which is great - the sooner this is over the better.
You said you are having 6 sessions of FEC how long does that take ? I dont know why the give us different types it must be the grade/type of cancer ?
Also I have decided not to bother with the cold cap. I am a bit of a worrier and I had heard that the chemo may not work in the scalp area if you use the cap. If I am going to do this I may as well do it properly!!! Hair can grow back again. What have you decided ? We will probably lose our hair at the same time !!!
Debbie - Im glad your feeling better. Im sure it is just stress, I keep feeling achy and start to worry its something more serious. Im sure it will be a long time before we learn to relax and forget.
I too was at the unit today to sign forms get blood taken etc. They mentioned the cold cap but like you i am not keen sounds like torture treatment and may not work anyway.
Fabulous you have got on a trial, the quicker this is over the better. I have resigned myself to the fact that the hair will go (i am more upset at losing hair than boob) but rather be bald than the alternative.
The chemo nurse said they will give me a voucher/form on Monday to pick one up in Manchester ( big wig store apparently) or I can have an app with someone who attends the chemo unit every Tuesday with a selection to try !! They even have a local hairdresser who will cut it for you. I am having my hair cut tomorrow night into a short style so its not as traumatic when it falls out. I am buying some soft cloth hats too called buffers ( from the macmillan shop) to wear in the house.
buy you are organised i am impressed hun!!! I have to ring a number in Darlington asap to make an appointment might do it tomorrow and try and make an appointment for saturday. What are these buffers? can you look at them on the web?
Yes still scared but feel better after today. I like to be organised i think i am driving them mad at the unit !! - I made them book all my apps today so I know here Im up to.
Im not sure if you can get the buffers online I tried to look for headwear but had no joy. I will ask on Monday for you if you cannot find them - they look like a soft cotton beanie hat with a knot on the top. If your have a breast care nurse she may be able to help too.
Right am off to bed now I always get tired when Ive been at the hospital - god help me next week !!!
Not at this stage yet but a friend who has had chemo has recommended a web site in America not sure if I am aloud to name it on hear but try google headgear