Vulval Cancer~ I struggled to get diagnosed by Audrey Blair

I will be 60 years old next January . I was diagnosed with vulval cancer in May 2017 . I struggled to get diagnosed like so many others with this type of cancer . I underwent 9 months of brutal treatment as the cancer had spread to my lymph nodes in both groins. If I had been diagnosed earlier this probably would not have happened . I had chemotherapy , surgery to remove the tumour followed by plastic surgery and radiotherapy.
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> Chemotherapy … Now that was tough at the time and I had lots of side effects . The main long term effect for me is what they call Chemo Brain . It’s like an intermittent fog which makes you feel muddled at times .I also feel that my sense of balance was affected . I know I’m getting on in life and sometimes I put it down to an age thing but to be honest I was nowhere near as bad before the chemo . My skin has suffered since chemo also . I got white blotches around my eyes which never went away . My skin is a lot drier too. The veins in my arm that they used are lumpy and useless now and I have a large lump on the inside of my elbow which had to be investigated last year . They did an ultrasound and said it was nothing to worry about just a side effect of chemo .
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> Surgery …My tumour was removed from around my clitoris . The plastic surgeon made a flap to close the wound . I am disfigured ,but to be honest I don’t think it looks too bad now . I lost my entire clitoris and surrounding area. The whole area has remained numb since the surgery . Obviously I have no sexual pleasure whatsoever now . No orgasms for me . I have been married for 36 years and and my husband and I always enjoyed love making . Now we have had to adjust to a new situation of no sex at all . What would be the point ? I feel really sorry for my husband . We have had to find new ways for physical pleasure . Never was I given counselling or was sex talked about with the medical profession . I was issued with hideous hard plastic vaginal dilators and that was it . I did try them and then bought rubber ones that were better but I hated them and it was sore, so I gave up . I was only using them in case I needed examined vaginally in the future .
> Also when I pee now about 4 jets of urine squirts out all over the place and the whole area gets soaked . No matter how much I wipe myself after peeing when I walk away from the toilet a trickle of urine runs down my leg…….lovely NOT .
> One of my groin scars from the lymph node removal (about 5 inches long) healed quite tightly and constantly pulls . It causes a pouch of lymphoedema to swell up over it like a lump . I gently massage it after washing but nothing really helps .
> I don’t have pain from my surgery site as it is all numb . When I check things with a mirror I can’t find my urethra due to scarring and that worries me sometimes in case I need catheterised .
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> Radiotherapy … Well this is the treatment that really threw me . I wasn’t informed of all the side effects from this ! I suffered severe burns on pubic area , vulva and inner thighs . I was in hospital on bed rest for 2 weeks . I didn’t know that you keep cooking after the radiotherapy stops . Like taking food out of a microwave !! Slowly the skin healed but has left unsightly red blotches and dark patches . It is also paper thin and prone to breaking down . It is very hard to ever wear underwear as everything I’ve tried can cause the skin to break down . I have spent a fortune on trying different pants and a huge amount of time scrolling the internet for suitable ones to no avail .
> I had pretty bad bowel issues for the year following radiotherapy which I believe is common with pelvic radiotherapy . The worst time was the morning when I had urgency and sometimes didn’t make it to the toilet in time ….YUCK ! Mostly diarrhoea . Fortunately as time went on things have settled down . I take probiotics .
> I have had 2 episodes of cellulitis following my treatment . The last one was scary and serious and I actually thought I may die( and so did my husband ) I was in hospital for 10 days in an isolation room as they found Strep B in my blood . All the intravenous antibiotics weren’t working but finally they hit on the right one ….phew ! I am now on life long Penicillin V which I take daily . Long term antibiotics can damage organs so I have to have 6 monthly blood checks ( not from my chemo arm ! )
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> Mental Effect …. All of the above is physical effects of my cancer treatment but by far the most challenging for me is the mental trauma that cancer diagnosis and treatment throws at you . Firstly you stagger out of the consulting room after initial diagnosis in a total daze . Totally unaware of what lies ahead of you . All through the treatment you are focused …. checking appointment dates and times , taking medication on time , reading up on stuff and working out what to ask at your next appointment .
> When treatment finishes all that is gone and you have to adjust to the NEW YOU . Your family and friends say you look good and congratulate you on getting through cancer but really little do they know how much you have changed . I feel like a totally different person now and keep it all to myself as I don’t want to upset my family . I already feel so guilty for bringing this dark cloud to everyone . I wonder when it may return and when I will die . I went for counselling at the Maggie Centre as I was anxious and depressed suffering awful morbid thoughts . I am now more accepting of what’s gone on and try to stay positive . My therapy is enjoying nature , my dog walks and my beautiful grandchildren . This cancer journey has certainly been a mad rollercoaster that’s for sure .