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Life after cancer work, emotions, what is normal?

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Lexia Moon
Life after cancer work, emotions, what is normal?

Hi, 

Sorry in advance for the essay. I was diagnosed first week of 2019. No children and caught early; so my consultant luckily agreed to hold off on the radical hysterectomy & chemo. 

Two extreme LLETZ treatments later (01/19 & 02/19) the tumour with most of my cervix was removed. Staged as 1B. Due to it being larger than suspected I then had robotic assisted bilateral pelvic node dissection & an endometrial biaposy (04/19). 55 nodes were removed, all came back clear as well as the biopsy. I am awaiting my first check up today which I am very nervous about. 

I ‘was’ a secondary school teacher and continued to work after initial diagnosis until I got an infection after my first LLETZ treatment, and realised I was exhausted. I have been off sick since. I am extremely lucky to have an understanding employer who has been supportive. 

It has been 14 weeks since my last operation. I am still suffering with side effects such as swollen feet/ legs and bleeding if walking too far or on my feet to long. I am still experiencing pain in my pelvic area. I am also still exhausted all of the time. Since finding out that my treatment is completed and I am moving into the monitoring stage I have struggled mentally. I’m not coping well with the changes to my body, I am also struggling with intimacy with my long term partner, even with just a hug. I have felt very anxious & depressed recently. I think I put on a brave face and now it is ‘over’ it has hit me. I am having counselling to help with this but progress is slow. 

I also feel that I am being a bit pathetic. I have survived cc without having a hysterectomy, chemo or radiotherapy. So at times I feel a bit like I am a ‘fake’ that I got off lightly so should move on quicker. 

My mom and partner and 2 close friends have been amazing and supportive and I am lucky to have them. However other family members & friends have not been supportive. A lot of people keep asking why I’m not back at work now and when I am going to get back to ‘normal’. I feel very misunderstood I don’t think it will be possible to ever go back to fully being ‘normal’. I feel as much as I want to go back to work, my job is very stressful, demanding physically (constantly on my feet/don’t stop) & emotionally. I am struggling with normal life atm so I am very scared about going back to work and being ‘normal’. I have read a lot of articles about people who worked through their cancer treatment or went back to work after a month or two, which again makes me feel like I am being pathetic and should get on with it.

I wondered if there was anyone who had similar experiences? How long from being told you are ‘cancer free’ until people went back to work? How long did it take people to recover? How did you cope with getting back to ‘normal’? What is normal after cancer? 

01/19: Diagnosed adenocarcinoma of the cervix. All previous smears clear. Suspected grade 2. (Age 29).

01/19: LLETZ to remove tumour.

02/19: 2nd LLETZ to remove tumour. 

03/19: Tumour fully removed from cervix. Graded as 1b. 

04/19: Robotic assisted bilateral pelvic node dissection & endometrial biopsy. 55 nodes removed. 

05/19:

All lymph nodes & biopsy clear.

07/19:

1st check up still cancer free. 

Flower Power

Hello Lexia,      Sorry you have had to enter this cancer world at such a young age.    The questions you are asking are impossible to answer.    Every person is different as to how they cope with the new situation that has now become the centre of their life.    I see you are having counselling and you have a strong network of friends and family which will help.   The only advise i can give is to take one day at a time and you will gradually learn to accept what has happend and that you will not let it control your life.     Never think you are being pathetic reading other stories of people going back to work.   Everyone takes their own time to pick the threads of normal life back up.  When you do feel ready perhaps go back on a part time basis to see how you cope.   

You are a brave lady ,  You have survived CC,   emosionally you will recover,  life does go back to normal after cancer.      Just take your own time to get there.

Take Care XXXX

Flower Power

Lexia Moon

Hi Flower Power,

Thank you for your kind words and support. It has been harder since treatment finished and monitoring began. I don’t if that’s because you don’t have something to ‘focus’ on anymore like that next operation. I will try to take a day at a time. I think I have been pushing myself/ feeling guilty about not bouncing back straight away. But maybe I am just being too hard on myself. 

I am going to go and speak to my boss about a phased return when I am ready, in the hope this will start to appease my worries. 

Thank you again for replying, it’s hard to open up but lovely to have such a supportive response. 

Thank you xxxx

01/19: Diagnosed adenocarcinoma of the cervix. All previous smears clear. Suspected grade 2. (Age 29).

01/19: LLETZ to remove tumour.

02/19: 2nd LLETZ to remove tumour. 

03/19: Tumour fully removed from cervix. Graded as 1b. 

04/19: Robotic assisted bilateral pelvic node dissection & endometrial biopsy. 55 nodes removed. 

05/19:

All lymph nodes & biopsy clear.

07/19:

1st check up still cancer free. 

Lotty9000

Hi Lexia

I’m sorry to hear the journey you’ve been on so far. No one can comment on how you should or shouldn’t deal with things. The only think I’ll say on it is do what you feel is right for you!

I do know what you mean in regards to feeling a fraud (although I don’t think you should). I had very early staged adenocarcinoma which was fully removed following 2nd Lletz. I’m awaiting hysterectomy as my family is complete. I was diagnosed at the beginning of May and that whole month I found extremely tough, ppl who knew were fab. I got the all clear officially on 3rd July,and feel since I’ve been cured with lletz and avoided radiation etc i had no right to be so upset through May. I’m aware this sounds a little crazy but I understand a little how you feel.

Take care and you are not alone. Look after you and the rest will come xxx

11th March 2019- 1st ever abnormal smear. (Never missed a smear)

1st May 2019 - Colposcopy with LLETZ

9th May 2019 - diagnosis ?1B Villoglandular adenocarcinoma 

22nd and 23rd May 2019 - MRI/CT

29th May - MDT meeting. MRI/CT clear. Amount of tumour 1A stage.

13th June 2nd LLETZ with top hat procedure 

3rd July Confirmed staging 1A1, clear margins on 2nd LLETZ. Scheduled for laparoscopic hysterectomy, keeping ovaries.

29/8/19 Total Laproscopic hysterectomy with ovarian conservation.

Awaiting final pathology results 

Lexia Moon

Hi Lotty,

Thank you, I am sorry to hear about yours too! It is hard to know what’s right isn’t it? There is no one size fits all or guides to navigate you through it. 

It sounds like we have had similar experiences. I’m glad that the ‘fake/ fraud’ thing doesn’t sound completely mental. When I try and explain it to people they just don’t get it. So thank you for understanding.

Congratulations on the all clear that’s awesome news! I hope your upcoming operation goes well! I am glad I am not the only one that feels that weird guilt. I think you have every right to be upset. You have been through so much and I think you’re right we shouldn’t give ourselves such a hard time. 

Thank you for the support and kind words! It’s hard to open up, but seeing I’m not alone helps. 

Good luck with your upcoming operation xxx

01/19: Diagnosed adenocarcinoma of the cervix. All previous smears clear. Suspected grade 2. (Age 29).

01/19: LLETZ to remove tumour.

02/19: 2nd LLETZ to remove tumour. 

03/19: Tumour fully removed from cervix. Graded as 1b. 

04/19: Robotic assisted bilateral pelvic node dissection & endometrial biopsy. 55 nodes removed. 

05/19:

All lymph nodes & biopsy clear.

07/19:

1st check up still cancer free. 

Philleepa

I don't think there is such a thing as normal. Everyone is different and they deal with things differently.  

I stopped work for 6 months after initial diagnosis but I couldn't wait to get back to work and put all this behind me. When I got the results of my first scan i phoned my husband then got straight on the phone to a lady who wanted childcare. I started back to work 2 weeks later. Everything else has come back slowly, socialising, exercising and just general life - all just as and when I was ready. 

 

Jazza
Jazza's picture

Hi Lexia

I'm picking up on your swollen feet/legs and the fact you've had 55 pelvic nodes removed.  If it's OK to make a suggestion: do you want to consider getting checked for lymphoedema?

Take care xx

Feb 04:  (age 47y) Smear test normal

Stopped going for smears!

Summer 16: persistent yellow vaginal discharge

Dec 16: post menopausal vaginal bleed

Jan 17: Hysteroscopy under GA for ?fibroids - abnormal cervix observed -multiple biopsies taken, 1B1 squamous cell cc diagnosed - confirmed by MRI/PET scans

Feb 17: pelvic lymphadenectomy - nodes negative, Da Vinci radical hysterectomy- close anterior margin/LVSI/PNI, restaged to 2A

Apr/May 17: 6x chemo, 25x external radio, 2x brachy

Jul 19:  NED.  Various side effects notably hypotonic bladder since hysterectomy - ongoing ISC, unilateral lymphoedema lower abdo/groin/leg/ankle/foot

 

 

pamla

Hi Lexia Moon, thank you so much for sharing your story and how you've been feeling - please know that you are not alone.

I received my diagnosis in December 2018 - stage 1b1 villoglandular carcinoma and I had a radical hysterectomy on 23rd January 2019. There were some complications during the surgery and I was readmitted with lymph issues 2 weeks later. Basically, lymph was draining into my pelvic area and had formed 2 cysts. One was drained surgically and the other was pouring out through my vagina! Grim! While I was back in hospital I received confirmation that the surgery had been successful and that I wouldn't need any further treatment. This was obviously fantastic news but it didn't stop me feeling utterly awful about everything else that was happening. I just felt so ill.

I also work at a secondary school - I'm a pastoral assistant so really need to be in good mental and physical health to do my job well. I've been signed off since my diagnosis and will be returning on a phased return in September.  I simply haven't been well enough to go back any sooner.

My physical health is now much improved - one cyst remains which means my belly is still swollen and uncomfortable but am thankfully no longer leaking! Swimming and some gentle exercise has really helped... I'm also having some counselling which is helping me recognise how very vulnerable I now feel.

The diagnosis, the surgery and the complications have really taken their toll on me. I've survived some pretty traumatic experiences in my life already - we lost my husband to suicide 6 years ago - so I know I am a strong, capable woman. I just still feel a bit 'broken'... I'm trying really hard to be kind to myself (not always easy!) and I hope you are doing the same. Don't rush back to work - my school referred me to occupational health who were so fantastic - to be told that I wasn't fit for work really took the pressure off and helped with the guilt! Getting signed off was honestly the best thing I did.

Good luck with your ongoing recovery - please do take good care of yourself and keep in touch re your progress.

Jan xxx

 

Katie148

I worked from the day I found out at my desk, to the day before my radical trachelectomy. 7 weeks off to recover and back in full time again with no phased return or support. I also feel guilty like I got off lightly with the trach, but then I feel bitter about people can have the financial security to take a year off work, have their family close to them or have a partner. Everyone has different experiences, they are all equally shit! I’m 25, single, my mum is 200 miles away, I’m in 15k credit card debt and my company doesn’t do sick pay so I literally have no choice but to work and it’s draining my mental health. If you can afford it or your company will help, take as much time as you need off and don’t think twice about it!

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Moving forward from a cancer diagnosis