Feeling fed up

Cervical cancer post treatment and side effects
1

Dear lovely ladies

It's a year since I realised there was something seriously wrong and 6 months since completing treatment.

I am now cancer free ( or Colin - free as I named the tumour!) and am eternally grateful for that.

I thought I'd reach out to the Jos community for some words of wisdom!

Does anyone else feel fed up but then feels guilty for that? I think the expectation is that I wear a pink tutu and run around the park raising money for a cancer - related charity !

I coped fairly well during treatment but don't seem to be coping so well with the long-term physical and psychological side effects.

As well as the tinnitus, fatigue and premature menopause I have significant stenosis and my upper vagina has become closed off with the scarring and ongoing problems with my bowels. The gynaecologist was able to reopen my vagina temporarily with her fingers but this caused a considerable amount of pain and bleeding. I am expected to do this to myself on a regular basis and cannot get my head round this. I have tried using  vibrators in place of the dilators but still cannot bring myself to go far enough to cause pain or bleeding.

I have recently discovered that my vitamin D levels are very low which may account for some of the fatigue and weight gain and have started supplements but I am suddenly feeling very old and unattractive!

I have had some sessions with the psychologist which were useful at the time and my manager has referred me to Occupational Health. Unfortunately I am unable to get to the new Jos West Midlands support group as it is too far away and the local gynae support group is held during work hours.

Because of my history of anxiety I am terrified that if the cancer returns I won't be taken seriously , as before, & due to the stenosis I can't be properly examined.

A good friend I made at the hospital has had a reoccurence of cancer recently (or Clifford as she named hers!)

She is being very brave but I can see how frightened she is.

Anyhow I'll stop whingeing now but just needed to offload!

 Hope everyone out there is doing well 

Louise 

xxx

 

 

History
July 2014:
Heavy bleeding starts despite taking Cerazette which had stopped my periods for a long time
August 2014: 
Trips to GP x 2 bleeding now "flooding" despite taking Tranexamic acid and Norethisterone
September 2014
External & internal Ultrasound - results unremarkable
Spent evening in A&E as unable to stop bleeding then sent home
Saw GP following Monday - she asked if she should put "depression" on my sick note?
Exasperated I contacted Priory and arranged to see gynaecologist that day.
Referred for hysteroscopy D&C & endometrial Ablation
October 2014:
Attended Women's hospital for the above procedures. During investigations surgeon unable to complete procedure as he had located "something sinister" which when translated by the nurse meant a tumour
Following results of biopsy and further examinations & scans a diagnosis of Cervical cancer stage 2B confirmed
November 2014:
Contract with new employer begins  (diagnosed while working my notice)
Started treatment.
January 2015:
Completed course of chemotherapy, radiotherapy & Brachytherapy, 2 blood transfusions, several courses of antibiotics & injection of Neulasta.
April 2015:
Scan shows treatment has been successful
May 2015:
Start new job on a graduated return (6 months later than planned!)
2

Sorry to read this. I'm still very recent to all this, and hope to goodness I don't have some of the complications you're enduring! I think you've every right to feel fed up, I get down and am not so bad off as you. Look after your emotional health as well as physical. There is no more reason to think there will be reoccurrence but if there is, I'm sure you will be taken seriously xx

3

Thanks for your kind words 

I had a rabbit named Blackberry!

I hope you are doing OK?

Are you mid- treatment?

xx

 

4

I've had a radical hysterectomy 11 days ago. I'm hoping that will be all I need, but am waiting for results from the lymph nodes they removed. I'm healing okay though thanks x

5

I'll keep everything crossed for you! Xx

 

6

I think the hardest part of the Cancer journey is when all treatment is over, people have stopped being 'extra nice' and you are just left to get on with it. On my blog there is a link to s fabulous article about what happens after Cancer written by s oncology psychologist. The post is called ' a million times this' it said everything u wanted to say and more. Are you coming to Jo's lets meet in Septemver. The workshops are great. 

im sorry to hear your friend has had s recurrence. Ive just lost a friend to cc and it brings stuff back to you. I know you joke about wearing a pink tutu etc, but I have found getting involoved in a bit of fundraising has given me a good purpose and slmost a feeling that im still giving Cancer a kicking. 

 

7

Hi 365 days

i had a look at your blog v interesting I hope you have found it a cathartic experience writing it.

unfortunately I could not open the link to the article you recommended and it looks like the website it appears on has been discontinued.

I don't think I can come to the meet up maybe next time xx

 

8

I think its only natural to be worrired, I'm a natural worrier myself. But I think life is for living try and enjoy life and do anything you can to make aniety lower. Could you afford to have extra tests on top of nhs ones privately?

I live near Solihull where are you? Xxx

9

Hi Louise :-)

I too had a huge slump within a year of diagnosis and treatment. Eventually I took myself all the way to UK to get some good counselling because it's one thing I realy cannot get being based as I am on a remote Greek island. I found a former Macmillan nurse who now does counselling - very very well worthwhile. It has completely turned my life around and no, I don't feel it necessary to run around in a pink tutu but I sit here cheering you all on over the internet as it's all I can do.

Be lucky :-)
Tivoli
xxxxx

10

Hi Sarah I'm in Bearwood so not far away. 

how are you doing? Still waiting for results?

hi Tivoli thank you for your ongoing support.

i think I may be able to get to the meet up in Manchester now - is anyone else going?

xxx

11

Hi 375 days I'm hoping to see you in Manchester! Where are you travelling from?

x

12

Hi, I'm new to this but reading your details its very similar to my experience I was told I had 2B in December and finished my treatment in March. I'm back at work part time but am struggling with the fatigue. I don't live too far from Birmingham and had my treatment at the QE. Does attending the groups help, I have good and bad days.

 

13

Hi Arrigan

where abouts are you?

unfortunately the West Midlands group is being held in Staffordshire so I haven't been able to get to any.

are you going to the meet up in Manchester?

hope you are doing ok xx