I returned for my follow up appointment
The good news – I got to keep my knickers on. Wooo!
The bad news – I would have to have to ride a radioactive dildo to be considered “cured”.
The cruellest part of being told this – was the lack of any evidence suggesting the cancer had spread. Oh, and it being confirmed I would never be able to have HRT as it was confirmed my cancer feeds on both hormone types. As far as my surgeon was concerned – I no longer had cancer. My chances of recurrence at this point was about 5%. The specialised radiotherapy called brachytherapy would reduce this risk to about 1-2%. Piece of cake – right? This seems to be the common consensus.
So make sure you are sitting comfortably and let me give you a few more details about brachytherapy and its side effects.
So what is it?
Brachytherapy is when cancer is treated by inserting radioactive material directly into the affected area. A high dose of radiation is given to the tumour, but healthy tissue only gets a small amount of radiation. It is usually used to treat prostate cancer, cervical and womb cancer. It’s also used to treat other cancers such as head and neck cancers. So in my case the applicator would be placed directly into my vagina due to my lack of a womb. Radioactive material will then be inserted inside the applicators.
Oh, that doesn’t sound so bad!
Yeah, I’m really looking forward to being stripped, my legs being strapped up above my head – wide apart leaving me entirely exposed. Then being clamped to the table by my newly constructed vagina whilst a selection of applicators are inserted into me by a whole team of people. Then I will be left, alone, in this position whilst a machine churns and radioactive material remain inside my body destroying my healthy cells as I literally do not have cancer 🙂
Well, I guess it’s better to eliminate the risk. And you are lucky it’s not chemo!
Yeah, the benefits of destroying healthy cells in your body just weeks after major surgery seems like a swell idea to me. And you are right. It’s not chemo. And I’m thankful for that, the side effects are far from desirable though.
Oh there are side effects?
Short term side effects aren’t so severe. Just the classic tiredness, diarrhoea and/or nausea, griping or cramping pain, a burning sensation when passing urine (similar to cystitis), blood in urine, passing urine more frequently than usual, sore skin, broken skin, blisters on the vagina.
After everything you have been through you can totally deal with those!
Having had a chronic condition which resulted in significant pain for well over half of my life, I probably will be able to. The long term side effects are causing a lot more concern.
If we start with the effects on the bowel or bladder. Because after radiotherapy, the bowel and/or bladder may be permanently affected. Pelvic radiation disease can develop which are thought to be caused by the bodies’ own immune system continuing the healing process after the radiotherapy treatment has ended. This causes continued inflammation and damage the blood vessels. The damage to the blood vessels can cause scarring and thickening of the affected tissues and organs, which effects their flexibly, stops them working properly and causes can cause blood loss, diarrhoea, constipation and ultimately the loss of control of the bladder and bowels which may be as severe as complete incontinence. Fucking delightful, right?
Oh, that’s pretty grim. You may not get that though…
You are right. I may have irreparable damage to my vagina though. I’ll just give the basics of this as prolonged talks about my vagina seem to make people uncomfortable. I’ll be at risk of my vagina tearing, losing all natural moisture, fibrosis (the formation of scar tissue) my vagina literally narrowing and becoming shorter which could possibly lead to sex being uncomfortable if not impossible. Let’s not forget part of my vagina was cut out anyway. Sores can develop which are normally treated with hormone creams which I cannot have as my cancer feeds on fucking hormones. I will need to insert applicators into myself regularly to prevent my vagina from healing over. I mean the good news is I am already in surgical menopause so the menopausal symptoms will be no surprise to me.
And that is all caused by the brachytherapy?
It sure is. I left the best for last though. So I had 25 lymph nodes removed during my surgery, and this is a very high amount to have removed. The reason for this was so my oncologist could be as certain as possible that my cancer had not spread to any of them, fair enough – right. Well, radiotherapy treatments can affect the lymph glands in the pelvic area and can cause swelling in the legs and/or groin. This is called secondary lymphoedema and is more likely if a patient has had surgery as well as radiotherapy. Lymphoedema is a long-term (chronic) condition that causes swelling in the body’s tissues. It can affect any part of the body, but usually develops in the arms or legs. It develops when the lymphatic system doesn’t work properly. (The lymphatic system is a network of channels and glands throughout the body that helps fight infection and remove excess fluid). And I have a far higher risk of this due to having so many lymph nodes removed.
Oh, so how long are you at risk of that for?
The rest of my fucking life 🙂 Once developed its just a case of adapting my skin care as I’ll always have a heightened risk of infection. Using elastic compression garments to help prevent the swelling from building up in my limbs. Adopting a programme of exercise and movement – to try and maximise lymph drainage without over exertion (this would cause the swelling to worsen). And medical massages to assist with the draining of fluids. I’ll always be at risk of my legs turning into swollen, infected tree trunk looking stumps which will forever impact my mobility. There is no cure.
Yeah, I’m pretty fucking lucky, right?
P.S If you are wondering why I didn’t just link a website for this – there literally isn’t one that covers the effects for my cancer. Not even MacMillan. Most women who have my cancer refuse treatment and chose to die naturally – now there is something to give you a little hope!