Together we will beat cancer


Struggling after the cancer

14 Nov 2017 08:23

Hi, not been on here for a while since I was diagnosed with vulva cancer in February. I had the op in March too remove the tumour which included losing a part of my vulva,was hard too accept (women thing I guess)  but slowly with the help of my partner I came to terms with it. Tumour removed,thought great its over I've beaten it I'll now be ok,everything will go back too normal.

Apart from now 5mths later I have lymphedema in both legs which are expanding fast,also have lymphoedema between my legs due too lymph nodes being removed. I thought I'd won,yet this is so hard too deal with. I'm struggling too walk/sit/stand. I'm only 44 years old,a Grandma too two beautiful girls,one aged 2 and the other 3 mths,yet I feel like I'm getting worse,trying too run round after especially 2 year old,makes me ache so much if my legs aren't burning or tingling badly,their aching like crazy,my feet feel ice cold,yet not cold too touch,next minute there burning and tingling like mad. I can see the fluid under my skin,especially on my knee caps...

I'm scared,I scared of what lies ahead. I work (just) I do 4 hours a day at Primark but struggle daily. I do where my compression stockings every day,also have a compression pouch i wear between my legs but I don't seem too be getting better,I'm noticing the changes daily. I'm scared,it's weird,the cancer I dealt with,didn't really cry or anything just got on with it,yet lymphedema reducing me too tears most days. Im on 600mg of ibuprofen every 4hrs,plus co-codamol and amtripilyne (not sure how too spell it) too help me sleep at night. Yes they knock me out but during the day nothing seems too help. Anyone else have the same as me and any advice x 

Re: Struggling after the cancer

14 Nov 2017 08:58 in response to Racheal

Hi Rachael, Lymphoedema is my biggest fear as well. I have been treated for penile cancer and have so far avoided having to having all my groin lymph nodes removed. If it becomes necessary (unlikely, but possibe) the risk of lymphoedema becomes very real. I hope your lymphoedema gets better over time as I know this sometimes happens. But it sounds awful and you have all my sympathy. xx Harry

Re: Struggling after the cancer

14 Nov 2017 09:01 in response to Racheal

Hello Racheal and welcome back to the forum.

I'm sorry to hear you developed lymphoedema after your cancer treatment, it does sound like you are going through a difficult time with all the swelling and pain you have to endure. Have you had a chance to speak with your consultant about this problem? If you haven't yet, it might be a good idea to bring up the issue at the next opportunity and see if there is anything they can do for you.

Also, there is a page from our website with some tips on coping with lymphoedema I wanted to share with you and maybe this can help a little? To read more please click here.

I hope this can be of some use, Racheal.

Best wishes,

Renata, Cancer Chat Moderator




Re: Struggling after the cancer

14 Nov 2017 09:03 in response to Harry2

Hi Harry,aww thank you. I was told due too where my cancer was I had too have them removed. I was also told if I got the lymphedema unfortunately i would get it in the worse two places as unfortunately you can't rest your legs constantly and if I sit for too long it hurts between the legs..guess I just thought things would be normal after recovering from my surgery so well..glad you are doing well and I wish you all the best with your future. Rach xx

Re: Struggling after the cancer

14 Nov 2017 09:07 in response to Moderator Renata

Thank you Renata I will look at the site. Yes I have consultations quite alot. This has just seem too have taken off more since Thursday. I have phoned my lymphedema nurse at Lewis Manning hospice in Sandbanks yesterday so hopefully she'll return my call. Think I just believed,ive beaten cancer that's it back too normal..finding it hard too realise top half of me ok bottom half not if that makes sense lol 

Re: Struggling after the cancer

1 Jan 2018 23:39 in response to Racheal

Hi Rachael, I have just posted this evening, new to forum...I have had a journey with very rare small cell vaginal cancer, In 2017 only 30 women reported Worldwde!!! told small cell the worse type,I went through dual treatment of both chemo and external radiotherpy at the same type 43 lots of radiotherpy!!!! and suffer daily with the after affects and still huge nausea,I also had internal radiotherpy called Brachy, agony!!!! did you have this? All so life changing, feels like I am someone else, I went back to work after a year off as in hospital for months, but I have had to give up work because of all the side affects, I bleed daily from my rectum and bladder with radiation damage (proctitis) etc. I have one daughter, and divorced many years ago. I do hope you get good help with your problems? having good medical support is paramount and folk listening too. Wish you well, Would be nice to hear from you,Never spoken to anyone with our cancer types, hard being rare!!!! x