First chemo

Katl1. Hi Kate, sorry to read you're feeling a bit rough after chemo. I didn't have it and can't offer any insight but I have read on other groups here people seem to have the same reactions. I'd contact your chemo team for advice. They may tweak your dosage and/or up your pain meds.

It does seem everyone's journey is different but I hope someone on here comes back to offer reassurance.

Sending hugs, Barb x

Hi Kate, sorry to hear your having a rough time , it will pass ( no consolation, but it will ). Your experience has been exactly the same as mine !! practically word for word.....iv never experienced pain like it, i ended up ringing the 24hr helpline . it was suggested i had developed Peripheral Neuropathy (nerve pain ) caused by the chemo and they have contacted my oncologist to see if they can reduce the dose for my next treatments i had my first chemo on 8th Sept. and it's only the last couple of days iv been feeling any better. i was prescribed Gabapentin for the pain but it didn't agree with me so only took them for 2 days as they wiped me out.  i was completely wasted, and couldn't function properly. my next chemo is on the 30th and i am dreading it and have seriously considered not going ahead if they don't reduce the dosage ( I really hope they do as I want to see this through, like you said i am normally a 'just get on with it' type of person but i have to admit i was frightened there for a bit.....I am still getting a little discomfort in my ankles but it is now easily managed with Paracetamol and / or Ibuprofen.   This last couple of days my hair has started to come out, so I am going this afternoon to get it cropped....now i feel like...onwards and upwards... i have a life to lead and I won't be beaten...LOL so   Speak to the team looking after you tell them everything your feeling, as things can be tweeked to make things easier..( so I have been told )  watch this space....

Hi nannyjanet

I was beginning to think that there was something seriously wrong with me other than the obvious. I phoned the helpline more than once and even presented at a&e on recommendation by the helpline. They were lovely but had no idea what to do with me and basically sent me home with co codamol which I now know isn’t going to help the pain I have. Eventually got amitryptilene and omeprazole yesterday evening which has definitely helped, feeling more like myself today. No change in my hair yet but I’m all organised with scarves and my wig for when it does. My daughter is a hairdresser so she will shave it off when it starts to go.

I really wish you the best of luck with your second treatment and I completely understand everything you are saying. Please let me know how it goes and will be thinking of you on the 30th

Take care

Kate xx

Hi Kate

i finished chemo in June this year and your experience after your 1st session mirrored mine. I rang the helpline on the 3rd day after my 1st treatment the pain was so bad. My pain was mostly in my legs from my knees downwards.  Some days I could not get out .of bed. I thought there was no way that I could take another 5 sessions, but I did and have now come out the other end.  I won’t lie to you it does get worse but I seemed to get used to it knowing that the worst would come after 2days of treatment and it would last for about 5 days.  I was prescribed liquid morphine which I think helped me.

Good look and remember why you are doing this.

Hi Kh4

Thanks for letting me know your experience. I too am determined to complete this treatment, just need to have better pain management which my GP is trying to sort out. Apparently it’s trial and error. I’ve now had my second round and was no better with amitryptilene so now I’m on pregabalin with tramadol for breakthrough pain as required. Third round is on Wednesday so will see from Friday night onwards if that combo is working.

Im glad you managed to complete your treatment and hope you are doing well

Take cate

Kate xx

Hi Kate

Fingers crossed that these new pain meds work for you.  On the bright side you are almost 1/2 way through.  Keep in your mind why you are doing this and it will all be over soon.

I went for my 1st follow up appointment with my local gynaecologist just last week, after being discharged from The Christie and was told that I looked really healthy down there which was good news.

you take care too.

That’s great news for you, I hope you feel well and continue to get back to “normality”.

If you don’t mind could you tell me what your follow up appointments at the Christie actually  entailed? I’m at the Beatson in Glasgow and I’ve been told that there will be no blood tests or scans, which concerns me greatly. My only symptom was occasional spotting I otherwise felt well so not sure what other symptoms to look out for.

Thank you

Kate xx

Katl1. Hi Kate, pardon me if I'm butting in here! - I agree the "patient led" looking for problems can be quite worrying as I too had no symptoms other than a couple of days pink mucous-like spotting which I was going to ignore. 

I think blood tests are helpful for other cancers i.e. Cervical and prostate but not for ours. They don't offer CT scans as a matter of course, I think due to financial constraints.

What to look out for is unusual swelling, obviously a bleed from anywhere - there's nowhere left to bleed from and unexplained pain.

It's almost a year since my brachytherapy and I've been experiencing shortness of breath and abdomen pain together with a change of bowel habits (can be a side effect of brachytherapy) my GP has referred me for a CT scan, I'm pleased to say, as my blood tests for inflammatory markers were also elevated - also have unexplained pain in shoulder. It could be the start of rheumatoid arthritis. These tests were ordered by my GP. I did advise my CNS, they're very supportive, but when I explained what I symptoms I was having they didn't think they sounded relevant to my cancer. 

Hope that helps a bit, I suppose it does prove the NHS have got us covered one way or the other as I said at the start they don't do blood tests or CT scans and here I am having both!

Sending hugs, Barb x

Kate

After my radiotherapy and brachytherapy finished I had a telephone consultation with the clinical nurse at the Christie.  I was then discharged from The Christie and referred back to the gynaecology dept at my local health authority where I had my first follow up appointment.  At that appointment I did explain that I was quite anxious about the cancer coming back and was told that I would be seen every 4 months for 2 years then the aftercare would be patient led, which is quite scary as like you I did not feel unwell and was in hospital for emergency surgery on an unrelated matter when they found the cancer.  I asked when I would be getting my next scan and she said there was no plans for any scans and they are not routinely part of the aftercare treatment.  I had an internal examination and was told that everything looked extremely healthy down there.

After 6 lots of chemo and then going to the hospital every day for almost 5 weeks for all the treatment to then stop it does make me quite nervous, but you cannot dwell on it and let it takeover your life.  We all don’t know what is round the corner.  Get your treatment over and done with (easy for me to say 8 know) and look forward to the future.  Please stay positive.