The Story so Far...Part 1

2010-05-01T11:18:20Z

Tuesday 20 October 2009. The day I was told I had cancer. The day I stepped on the rollercoaster for the most difficult and draining ride of my life.

I didn't have many symptoms that alerted me to having a serious health problem and to be honest, they could have been easily missed had I been a less diligent person. I was lucky to have a fabulous G.P. who referred me to a Gynaecologist and few weeks later I was having a biopsy. At this point I still didn't think I had cancer; I had my smear two years ago and all was fine then, so why worry?

For about forty-eight hours after hearing the diagnosis I was in my own little bubble, too numb to feel anything other than feeling numb! It is such a weird sensation that I think only people who have experienced a shock like I and everyone else on this site, can ever understand. It seemed like I was watching my life like a movie, going through the motions as I was told, when suddenly I would realise that this was my life and oh crap, it was me who had cancer.

Over the next few months the rollercoaster ride intensified. Within a week of my diagnosis I was in hospital having my lymph nodes removed to check to see if the cancer had spread. Luckily for me it hadn't so I was scheduled for a radical hysterectomy. I remember when I was told that this was the next step in my treatment and how calm I was when I heard it, how matter of fact I felt about being told I had to have half of my insides removed, essentially giving up the only thing I have ever wanted more than anything else in my life - the chance to bear my own children. I know how desperate I have been all my life to be a mother, how I wanted so much to know what it felt like to carry my own child to term, and it is because of these feelings that I am amazed at the way we humans adapt to news that threatens our lives. Even though this was my one true dream, one that I would take over anything else, I accepted the loss of it like it was a decision I make every day and the consequences of which I am only now beginning to deal with.

I had the radical hysterectomy at the end of November. I was in hospital for a week and then came home still waiting to hear about the pathology of the removed tissues. All along I had been told I had to be really unlucky to require any further treatment and the surgeons were quite happy that everything sinister had been removed. I let myself believe that perhaps this was all going to be over now; I could start getting my life back in order. I have been very good at reading situations and I knew that as soon as I stepped into the consultant's office mid-December that I was one of those really unlucky people. Disappointment again as I am told that it's now all over and that further treatment is still required. Why me? What did I do to deserve this? Have I not been a good person all my life?

A few days before Christmas I met my Oncologist who explained that there was some 'indecision' in the team of doctors treating me over whether further treatment was required or not. The surgeons believed they had removed the entire tumour and there was no further risk, however, the pathologist determined that my safe margins were positive and therefore there was a definite possibility that rogue cells had been left behind. It's funny, I kept joking that I was difficult and I didn't normally follow the path that others took and well, on so many occasions I proved myself right. I couldn't be a 'normal' patient could I, sticking to the rules of 'expected' and 'standard procedure' like other people do? I was so awkward I even caused a 'professional disagreement' between the pathologist and my surgeons which resulted in seeking a second opinion from the team at The Royal Marsden Hospital. Maybe being different from the majority of others is something to strive for but on this occasion I was desperate to be just like everyone else. Despite having to wait over Christmas for the news of their decision, my oncologist told me I would certainly need radiotherapy. Ok fine, I thought, I'll deal with that after Christmas, right now I just want to think about something else. And I did, strangely enough. The remainder of December was pretty normal for me and my family and we just got on with all the normal things that everyone else without a life threatening condition in the world was doing.

The Story so Far...Part 2

2010-05-01T11:13:38Z

January was meant to be my recovery-from-surgery time, as well as my getting-strong-for-radiotherapy time, but seeing as I am so damn difficult, I couldn’t do that could I? I woke up on January 1^st after an alcohol-free day before, feeling like I had a hangover. I felt awful and spent most of the day in bed. I was feeling so bad (I had a temp of almost 40^oC and a heart rate of over 130bpm) that I called the doctor out the next day, who said it was gastric ‘flu so I just needed to rest etc., which I did. I started feeling better and by the end of the week I thought I was over it, but I went downhill again fast. I saw my oncologist again on the Monday and after telling her how I was feeling she examined me and admitted me immediately. It was seven weeks post operation and even my surgeon didn’t believe I had an infection, but this is me we are talking about, remember? I don’t like to follow the rules as I have already pointed out! So another nine days in hospital due to a collection (infection) in the muscle of my abdomen, followed by a 5^th stay in hospital to have my ovaries moved as far away as possible from the field of radiation.

Because I was so unwell due to the infection, I couldn’t really take in what I had been told by my Oncologist on the day of my admittance to hospital. She told me that The Royal Marsden had looked at my case and the recommendations had come from Dr Peter Blake, the head of their Radiology dept. and one of the foremost Oncologists in the country. It was his recommendation that I have Chemoradiotherapy, something that had never been discussed previously and as expected it hit me and my family quite hard. For me, chemotherapy was devastating to people; I thought you couldn’t go through chemo and not come out of it looking or feeling like you had just about escaped death and I am sure that is what my family felt too. Having been through it I now know differently, but only a few months ago I was terrified.

For five weeks my life stopped being my life. Mondays were chemo days. Because Cisplatin can be quite harmful to the kidneys, I would spend the whole day in hospital being hydrated and having my fluid balance checked rigorously. Now, I am not a big drinker and to take on a litre a day is normally my limit, but because of the treatment, I was having at least five litres pushed through me in the course of eight hours! I have never been so well hydrated in my life! The first week of chemo was actually better than I had anticipated – you always imagine it to be worse than it ever really is. I didn’t have to worry about hair loss so the worst side effect for me personally was going to be the sickness. Thankfully the anti-sickness drugs were very good at alleviating the sickness but for me they had the knock-on effect of alleviating me of my appetite as well.

The radiotherapy was given alongside the chemo because Cisplatin is a radiosensitiser so it makes the treatment more effective with less effect on normal tissues. When I heard this I thought yeah, give it to me with both barrels and let’s kill this b****** once and for all. For the first two weeks of radiotherapy I felt OK. I was tired (I have been suffering with M.E. since 1996) but I was doing good, how hard can this be? By the end of the third week the ‘bowel’ side-effects had started to kick in and it was then that I realised that it was going to be an uphill battle from here on in. Due to having no tumour, my field of radiation was much lower than normal and therefore the side-effects turned out to be less severe than they could have been, but back then I thought it was hell on earth. Thinking about it, the radiotherapy was worse than the chemo was and yet all along it had been the chemo that I was more worried about! After the five weeks of external treatment I had three ‘internals’ (Brachytherapy) and then, just like that, it was all over.

It is now five weeks since my treatments ended and I am feeling better, physically. Things are returning to normal again and for my family life goes on as it did before. For me, I try to think of myself as the same person but in reality I am not. Nowhere near the same. I don’t know if I will ever return to what I was before or if it is even possible, but I have to believe that it doesn’t necessarily have to be a bad thing. Emotionally I am a mile away from where I want to be. For six long months all I have thought about and all I have strived for is to arrive at this place where I am now. Now that I am here, all I can do is look back on what I have been through and think about what could have been had things been different. I have lost so much. Chances to do things I will never be able to do. Time that has passed, which I will never get back again. Feelings of being normal, without the nagging fear that all this will have been in vain.

My journey so far has been a long and hard one but I have a feeling that the hard work has only just begun.

Kerry's Blog

The Story so Far...Part 1

The Story so Far...Part 2