Life after diagnosis by Clare Baumhauer

Life after diagnosis

My treatment took 16 months to complete, so 2 years after diagnosis I was coming to terms with the side affects that cancer has left me.

In July 2018, I got the news I was 1 year in remission but found it hard to celebrate, as your always waiting for it to come back.
Having Vulval surgery has left my Vulva numb, so no feeling left there anymore. I am lucky in the fact my tumour was in the perineum area so didn’t affect any other parts of my Vulva, but as I have Lichen Sclerosus I don’t know if I still have the itch so I need to be extra vigilant and having LS causes enough problem in itself.

The first lot of radiotherapy caused the menopause, so all sudden symptoms happened at once. I couldn’t sleep more than an hour before I woke up, waking up wet from the nights sweats, getting hot and having hot flushes that you can feel moving up your body, your heart racing fast, forgetting words or what you were going to do. These are just a small part of menopause! I started HRT which helped with the sleeping and night sweats.

I started irregular bleeding so ultrasound, more scans and a hysteroscopy to biopsy the uterus and a wait to see if I had womb cancer! Luckily they came back clear.
The radiotherapy also caused skin damage to my inner thighs which still hurts and the skin is damaged, sometimes it peels off and sitting on hard surfaces or for to long makes the pain worse.

The radiotherapy caused bowel problems which slowly got better but still aren’t right. The fatigue is still hard to deal with. Because the cancer had spread to my left lymph nodes I had to have surgery again 6 months after my Vulva surgery to remove the nodes, but I had many complications! I had surgery on my left groin 3 times and had radiotherapy again with an extra 8 boosted on my left groin, so I have been left with nerve damage and swelling which causes daily pain and problems. The second lot of radiotherapy caused me to get lymphedema in my left leg, pelvis and abdomen. This has caused my left leg to swell and causes pain daily aswell as discomfort especially as I have to wear compression tights everyday which causes other problems with my skin damage and nerve pain.

You have to put moisturiser on your legs twice a day, You can’t risk getting any cuts no matter how small incase you get cellulitis again. You can’t wear most of your shoes anymore or shorts because you have to wear tights. I could do a separate blog just on the lymphedema side affects as there's so many problems and changes to your life, daily routine and things you can’t do anymore!

All 3 side affects from cancer cause fatigue and brain fog so finding that hard on a daily bases, sometimes the brain fog is funny as asking your husband to move his sandwiches when you mean his glasses or playing give us a clue to communicate can get you down.
But I should feel lucky I’m alive as I don’t have cancer now!? Right? Wrong! It doesn’t feel like that, it’s not over, just because I look ok, I look well, it will never be over. Emotionally and mentally it will never be ok.

Radiation could cause cancer 15 years after treatment, I don’t know if any cancer cells were missed so only time will tell. I still have Lichen Sclerosus which caused my cancer. I could get Cancer somewhere else. All these play on your mind. You grieve for the life you had!

My new normal is still hard to except but I know I’m lucky as it could be worse and I’m still alive.
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But I’m tired of being tired.