In the previous blog post, we discussed the importance of developing our understandings of health through examining women’s social roles and lived experiences, and how this approach is founded on a strong history of activism and research in the Western world, particularly feminist activism with its history of sharing experiences and knowledges.

The blog post below, written by an anonymous guest blogger, provides a strong, personal account of how it is like to live with radiotherapy, long after the treatment has finished.

Late Onset Radiation Issues
By anonymous guest blogger

I finished the treatment for my cervical cancer almost exactly 4 years ago. I am a single woman, living alone and was aged mid 50s at the time of my treatment. I had a “radical hysterectomy with bilateral salpingo–oophorectomy”  including the removal of nearby lymph nodes. This was followed by 5 weeks of pelvic radiation daily (except Sundays) and lastly, a very long day and night of brachytherapy. 

I was made aware of the possible side effects: 

• Lymphoedema 
• Bladder and bowel dysfunction 
• Changes to my sexual function 

I developed lymphoedema in both legs within 18 months. But post treatment, my bladder and bowels gradually returned to normal. My libido was unaffected by the treatment. I presumed then that the lymphoedema was the only side effect. 

The lymphoedema and compression garments have a major effect on any confidence in my attractiveness and desirability. Also, my vaginal tissues have become so sensitive that they virtually always tear during intercourse. Apart from the initial acute pain, this always leads to cellulitis. Cellulitis for lymphoedema sufferers is a particularly dangerous condition – it can quickly result in hospital admission, IV treatment and even death! The first time I had it I just felt poorly and sleepy, later episodes became increasingly more severe: intense pain, a raging temperature, nausea and being unable to leave my bed for 3 or 4 days. One year, I had cellulitis 9 times. Each time I became more poorly, despite having a 10 day course of antibiotics always on hand in the house. It seems that if I want to avoid cellulitis again, I can no longer have sexual intercourse. 

As a single woman, it’s very difficult to explain these things at the beginning of an intimate relationship. It’s hard enough to even find someone you would want to have a relationship, regardless of these complications.  I had been given vaginal dilators when discharged and I used these. However, the impact of a self-administered dilator and actual sexual intercourse are very, very different.  

I think the changes to my bladder and bowel function were so gradual, that I hadn’t registered them as a problem until they became quite severe. Currently, I don’t think I could class myself as completely continent in either department. I have changed my diet over and over again to try to help what I thought was IBS. I now avoid grains, some fruit and most lentils, beans etc. I am not prepared to give up coffee or alcohol but I know they also have an adverse effect. Having attended a Continence Clinic, I know that my bladder can hold a normal amount when I am horizontal. And that my core and pelvic floor muscles are strong. However, I always leak from the bladder and sometimes also from the bowels. I always have spare underwear in my bag. I always, always wear incontinence pads. And I always leak, every day. I really struggle to hold my urine – I have both stress and urge incontinence.  

I also have virtually perennial diarrhoea. And when I need to go, I have less than 5 minutes before I am unable to hold on any longer. I regularly have embarrassing situations. I hate it. 

I’m not sure how this will affect my life going forward. It certainly affects my social life. So, in a way lockdowns have been a respite for me because I see fewer people, haven’t had any dates and have been able to cope with my situation alone and/or at home. I live in the countryside, so when I go out walking, I carry wet wipes, dog poo bags and spare underwear and just hope that no one ever sees me behind whichever rock or tree I’ve managed to get to in time. I don’t expect that this will change. 

Relationship-wise, it is probably too much to expect that any man would saddle himself with these problems – especially those related to sexual function. It’s one thing if you’ve been with someone for years when this happens. But for a man to choose it, is a very different thing. And that makes me really, really sad. I know people say that any man who really loves you, would understand, but those people are never single, mature women who have spent years on online dating sites. To be honest, I’ve now even given up using the vaginal dilators. I know I should use them, but sometimes, it’s easier to pretend that the sexual me doesn’t exist. 

I think I was properly prepared for the immediate adverse effects of radiation and my surgery. I don’t remember being aware that the onset of these conditions might not even start until many years later, or that they would get progressively worse. But at the time of signing consent forms for cancer treatment, I just wanted the cancer to go away! I would have signed anything that gave me that chance. But even with hindsight, I think I still would have gone ahead. It’s Hobson’s choice really.