12. Cancer Diaries - Lessons Learnt

This blog has been playing in the back of my mind for several weeks now. It's been superseded by other subjects along the way as they have been more time relevant. But now is the time to write this one. 

In projects, Lessons Learnt is when the project team look back over previous implementations to reflect on what went well, not so well and what they would change if they did it all again. It helps the team to learn from mistakes and also use again the assets or knowledge that proved beneficial. 

I'm using this concept of Lesson's Learnt to track back my own medical history. Strap yourselves in folks, this is a long one...

Warning - if you are in any way affected by medical conversations or abuse from a medical professional then you may want to give this chapter a miss. 

Here goes...

My childhood was pretty uneventful. My mum tells me I went to hospital at the age of 3 for a cyst on my eye, other than that no real scrapes or broken bones to speak of. 

My periods started at a normal age, around 11 I think, but unlike most girls who seem to get on with them I would struggle with major stomach cramps, nausea and the desire to pass out. As a teenager I spent many a Saturday afternoon as a customer, on the floor of a shop or in a stockroom as the cramps would kick in and I would have a short window before consciousness would fail me; much to the major embarrassment to my friend who I would be out with. It wasn't much fun for me either.

This monthly joy was a genuine concern for me and I was worried how I was going to cope with normal life and starting a career, once my studies were over. Fortunately, at the age of 20 I went on the Pill and literally overnight the pain stopped and I could function as a normal person. It was life changing. 

All was going swimmingly well until either my first or second smear test. Any woman will tell you that they do not look forward to these. They are intimate procedures and not particularly comfortable and you're always told to relax by the nurse administering them. Fat chance of that happening. I remember when the apparatus used was metal and would make a real judder feel and noise when clicked into position. Anyway, the results came from one such adventure and it wasn't good news. Pre-cancerous cells were found and I would need a procedure to have them lasered away. At the age of 26 I duly went to my local hospital for the procedure. I was given a local anesthetic and 'nuked'. I could have passed out while in the stirrups and I didn't much like the burning smell of flesh either. 

After such a procedure it is common practice to monitor the patient to check that the pre-cancerous cells don't come back again and so I was asked to have regular smears every 3 months for a year before switching to yearly, before finally, all being well, going back onto a 3 yearly cycle. I got very familiar with the smear test  procedure and all the changes they made, such as moving to plastic implements and brushes to take the swab. I moved to London just as I was meant to go back onto 3 yearly cycles but my new Doctor decided to keep up the monitoring. Fortunate really, as I got another bad result, and this time it had increased in severity. 

This was also around the same time that my mum was diagnosed with cancer of the womb, and successfully treated, so you could imagine that my family were now on high cancer alert with this latest news too. I've never wanted children so I pleaded with my consultant to perform a hysterectomy and remove the possible risk of cervical cancer. He declined, saying that the 'nuking' procedure was effective and besides, I was still young and healthy and could still breed if I changed my mind. (Every sperm is sacred and all that - Monty Python). He did agree to perform the procedure under general anesthetic this time as I didn't appreciate the burning smell of flesh last time round and also promised that, based on family history, that if it returned then we would discuss the option of a hysterectomy. 

Barely a year later, in 2010, another smear test result came in with the highest score of severity. I could always tell the results from a smear test. If the envelope was small then it was all clear. If the envelope made a thud as it crashed through the letter box and onto my floor then I knew I would need a procedure. 

This time I managed to convert over to Private Health and was able to bring up the discussion of a hysterectomy, still with the same consultant as before. My family history wasn't good in this area. My mum had cancer of the womb and a hysterectomy at the age of 65. My Nan had fibroids and had her hysterectomy at the age of 45. It only seemed sense that I join the family gang and have mine removed at the age of 37. But first, I needed to jump through many hoops. 

You'd think that I would have control over my body, but as we still see in recent media coverage, that would not be the case for a female. During the discussions about the procedure my partner was asked for his opinion/permission and for us both to acknowledge that afterwards I would not be able to have children. Fortunately, we are on the same team and have the same opinion about children so it was 'OK' to have my partner's blessing for this procedure to happen. At the time we were just keen to move through the 'red tape' but looking back at this we are both flabbergasted that this was asked. Imagine if my partner was not OK. My operation could have been stopped, without care to my own health, but for purely the prospect of possible breeding. That seems so messed up. My own health and wellbeing being put second to my ability to bare a child, even if it might kill me. 

During the investigations for the hysterectomy, to assess the gravitas of the operation, based on if the cervical cancer was already present in my body, it was also found that I had endometriosis on my left ovary. All the years of pain during my periods had been caused by this. The Pill had helped to mask the symptoms so I could function as a normal person but having been 17 years on the Pill my Doctor was now looking at trying to take me off it as it could increase risk of breast cancer in the future (irony - much). The Pill had kept me sane for so many years I was scared to come off it. Now my hysterectomy was solving multiple issues, removal of cervical cancer risk, the removal of endometriosis and a happy good riddance to periods. Biopsies taken during my surgery showed that cervical cancer was on its way and it was thanks to my pushing for this operation that it was caught in time. If I had waited another month, then the result would have been very different. I would have had cancer, and the procedure would have been very invasive and followed by therapies and further checks. Sometimes you just know something is wrong with your body and action needs to be taken quickly. As a woman, I really had to push for this surgery.

This operation really felt like freedom for me. It took me 11 years to get this procedure from my initial bad smear result. I was no longer trapped by poor functioning body parts that I had no interest in using. It also added another benefit too, for so many years I had been bugged by people asking if I had children and when I responded with no, their immediate response was one of pity, and to suggest that I still had time, in case I wanted to change my mind. Ugh! I could now use my hysterectomy as a reason why I now couldn't have kids and watch as the person asking suddenly felt awkward. Finally, payback. Please note people, some of us do not want children and live very full lives without them. 

I should also mention at this point that in 2015 the consultant who treated me was sentenced to 8 years in prison for abusing his patients. The abuse allegedly took place a few years after my surgery on numerous women where the consultant had become too familiar with the patients' lower genitals. I learnt of his sentence from my local paper. I felt so conflicted about this news. On one hand he had helped me with my own issues and given me medical freedom but I also had to beg for my treatment and jump through hoops for the best procedure for me. To then learn of this behaviour deeply sadden me. As patients, we have to put our trust in our medical practitioner as they are potentially saving our lives but also dealing with very personal parts of our body and yet, some still break that code. 

You'd think I would have had enough of medical stuff by now but oh no. In September 2013 my back suddenly became very painful. Literally overnight I was unable to run or jump and had to retire early from my fitness bootcamp season. My back was in excruciating pain and this extended down my right leg with sciatica. My Doctor prescribed heavy pain killers and anti-inflammatories which didn't seem to touch the sides. Eventually, after 6 months I was finally allowed to have a MRI. Doctors are usually very cautious about back injuries as they can be muscular and self healing over time. Mine wasn't. I was also able to convert over to Private Health at the same time so took my MRI disc to show my consultant. As I walked into his room he looked at me and wondered why I was visiting him. He then looked at my MRI and then asked how I was able to walk and that I needed surgery immediately. Many years of bootcamp fitness and having a strong muscular core was holding my back together. One of my discs had fallen out and this was causing all the pain.

A week later, in March 2014, I had surgery to remove the disc and fuse my vertebrae together. I took 5 days off for the operation and recovery. This was utter madness and I really needed at least 1 month of recovery - but that is another story. It took a year to recover from my back surgery, finally returning to bootcamp to relearn how to run and jump again. Doing my first Burpee was a strange sensation, I really did think my legs would fall off behind me. 

Back's don't just fall apart and I certainly hadn't triggered any trauma for it to suddenly break, but I do suspect that my hysterectomy was behind the issue. You see, your vertebrae will put out shoots to connect itself to organs in the body to act as scaffolding and keep the back strong. When you remove an organ you are affectively removing that part of the scaffolding and this weakens the back. So my hysterectomy effectively did this and you'll note that my back surgery scar is in the same zone as my hysterectomy ones. Women's problems strike again.

Let's wind forward to 2017 as I had a few years of being medically issue free. In 2017 I noticed that my face, cleavage and arms were regularly getting covered in itchy, weepy spots. I suspected it was flees in the office so would ask the office manager to spray my desk area. I even got a home inspection for bed bugs but got the all clear. I just couldn't fathom it. I went to see a dermatologist and their advice was to take anti-histamines. I seemed to be allergic to life. 

It was only when having a random chat with someone in Salesforce Tower that they mentioned the same issue and that it was to do with histamines. Histamines are found in food and drink and each one will have it's own level, for example: cauliflower, broccoli, courgette are all low and safe to eat. Alcohol, chocolate, black tea and tomatoes are all high and will trigger unwanted responses to someone who is susceptible. The itchy spots are one symptom but there are a range and I was also affected by regular toilet time and passing out after eating a meal. Depending on the food and drink I consumed, my body would then have to fight to process it via normal digestion. If the histamine level was too high then it would try to shut down. Most people could drink a cup of tea or coffee to perk up, while for me, it would make me super sleepy as my body would be in overdrive processing the histamines. 

During lockdown in 2020 I decided to sort out my body and come off my daily anti-histamine dependency because that ironically was also not helping the situation. For 2 months I went through a food and drink detox and confined myself to mostly safe foods, with some slippage on the side. Girl has to eat cake and have the odd glass of champagne. My body became a bucket for histamine management, if I ate well then the bucket level remained low. This then allowed me to have a cheat food, like cake, and not be too affected so my body could cope. I've been living like this ever since and it's mostly working. 

I'm thinking that my histamine intolerance is due to being peri-menopausal because, it affects everything else, so why not this too? Honestly, the medical world really hasn't got to grips with the menopause. 50% of the population will get the menopause and 100% of people are affected by it, because, if you live with someone going through the menopause, then you are going to know about it - trust me. 

It's really interesting that it is only in the last few years that menopause is a subject that is finally being spoken about. It impacts so much on a body and mind and yet is still this enigma. It isn't a mandatory subject for Doctors to study but I feel this is now, finally changing. It is warming to see that companies are now creating policies to support people going through the menopause, because we really do need help. Speaking of help, Doctors really do need to learn about the types of medical support that is available. Prescribing anti-depressants is not always the way forward. They are too brutal. They stop messages from the brain heading down to the ovary area which is meant to stop hot flushes, night sweats and the desire to stab people randomly, but they do this too effectively. I was prescribed anti-depressants in 2020 and found that I felt emotionally dead, like I was on morphine, I just didn't care about anything. The pills took 4 weeks to come into effect and I last another 2.5 weeks before stopping. I didn't like the effects and I do feel for anyone who is taking them. You lose your mind.

HRT has had a complicated history for those going through the menopause. It had, for many years, a bad reputation that it could be linked to breast cancer, while its benefits such as menopause relief and a protection from heart disease were not talked about. And then came the small issue of trying to get the stuff due to supply problems - thanks Brexit. Having given Black Cohosh tablets a go, which were pretty successful, I decided to try HRT for the heart benefits. This happened to coincide with my cancer diagnosis so that was short lived as my particular cancer was a bit partial to HRT as something to feed on. 

And so this brings me to now and my breast cancer diagnosis. You might be wondering why I am sharing this with you. Well, for some part it is to share my medical journey, but, you'll note that my medical issues are largely all related to hormonal imbalances and my reproductive organs trying to kill me. 

Women's health is still a shambles. We have to fight for our own voice and not be seen simply as a vessel for breeding. We have to beg for treatment so that we can live a pain free and productive life. And, on the occasion, we need to protect ourselves from the small number who abuse their medical position of trust. Is this really fair? I feel we are still a long way from equality. Support and action for women's health needs to improve radically. In the meantime, it is up to us as individuals to keep fighting our corner and demand the best quality care we can get. 

It's my life and I'm damned well going to live it as best I can, so help me do that.