My name is Charlie and I’m a 46 year old wife and mother living in Gloucester. Before I got KC I worked for the Diocese of Gloucester as a PA to the Director of Mission & Ministry. Before my diagnosis we were living a very mundane life, primarily life revolved around my son Nick and his extra curricular activities.
A few years ago I was starting to lose weight. I had had a gastric bypass over 10 years ago and my weight has been relatively stable since then and initially I was pleased, I could get into my tighter clothes without having to struggle to do them up. Then those clothes got a bit big and I had to go to the next size down but because I worked full time and had quite a busy job, I was running around after Nick etc, you sort of ignore it and think it is due to that. So ignore it I did. In the summer of 2014 I knew something wasn’t right and I went to see my GP, I told him my symptoms which were weight loss, tiredness, and a feeling of being uncomfortable in my abdomen and not being able to eat much and every question he put to me I had an answer to; could it be my monthlies – no, I had a hysterectomy 5 years ago. Perhaps I was B12 deficient – no, I have jabs every 13 weeks. Could it be problems with my gall bladder – doubt it, it was removed when I had my gastric by pass. In the end he told me that it was indigestion from my gastric by pass and take some prescription indigestion tablets. Well obviously that didn’t work so I went back and he did some blood tests and they all came back perfect apart from folic acid. He said that the low folic acid was causing these problems, gave me folic acid on prescription and told me to go away. A month later I went back to see him to tell him that I still felt awful, no difference etc and he told me I had to take to take the folic acid for at least 3 months before I’d notice a difference. Don’t ask me where it came from but my hand slapped the desk and I firmly told him that I had 3 of the first 4 symptoms of ovarian cancer and he was dismissing me without taking me seriously etc. He grudgingly referred me for a scan (and not even in the 2 week cancer window) and the day of that scan changed my life forever.
I had the scan on the Friday morning and I really felt sorry for the sonographer as she hadn’t been told any of my history so she was searching for a gall bladder which wasn’t there, then a uterus etc. I knew something had been found as she kept going over the area of my left kidney. I left the hospital and googled kidney problems and all it came up with was kidney stones. I didn’t think any more of it till the phone rang at 1pm and it was a different doctor in the practice (thankfully a really nice one!) who told me that they had found a very large growth on my kidney with its own blood supply and that she would refer me for a CT scan and that would happen within the following 2 weeks. I put the phone down, got my phone out and googled growth on kidney and there you have it. Practically every web page said the same thing. I went down and told my husband and we were both a bit stunned. He was very “well you aren’t completely sure and you have to wait for the next tests” but as daft as it sounds, I knew. I spent the next 12 days googling kidney cancer and finding out everything I could find out about it. I duly went and had my CT scan and I was told it would take up to 2 weeks for the results but a few days later my GP rang and asked me to go in and see her. I couldn’t as I had a meeting on in the furthest part of the Diocese that I had to go to so she had to tell me over the phone. She didn’t want to but all I was concerned about was had it spread? I had resigned myself that I had cancer, it was the next part I didn’t know. The good news was that it hadn’t spread but the growth was very large and she would refer me to the Urology Consultant, again, to be seen within 2 weeks. I put the phone down and I told my friend who started to sob and I ended up comforting her!! After that I got on with my job and went to my meeting.
2 weeks later and we are now in November and I went to see the Consultant. My appointment was 2.15 and we were seen at 6pm . By that time my husband was climbing the walls, I had to get childcare for my son as he was at after school club that shuts at 6 and he needed to get to kickboxing but we saw the consultant who showed us the tumour from the CT scan and it was huge – no wonder I was feeling full all the time and not wanting to eat, it was pressing on so many internal organs. He told me that I would be booked in for radical nephrectomy and normally, I would be given priority but their department was so over stretched, he would get me in within 4 weeks or thereabouts. He went to get us some leaflets but by that time every one had gone home so we left with nothing.
I had my operation on 9 December 2014 and if you knew my track record with operations, with every one there had been a problem – from internal bleeding to the machine breaking half way through one operation so understandably my hubby was very nervous. It couldn’t have gone better. I was put under at about 8.30 and by 4pm I was being wheeled back to the ward and I was starving! I was in hospital a week as I did get a post-operative infection but I felt ok throughout it all. I was uncomfortable but it was nothing compared to my hysterectomy so all was good. I came out of hospital on 16th December and life carried on. I had loads of well-wishers, flowers etc. and lots of offers of help which was great.
My recovery was slow, I had a lot of pain which caused a lot of discomfort and I was put on quite strong medication. Despite being able to move, drive etc, it just felt like I was in slow motion. I went back to see my consultant and saw the registrar who told me that it was all contained, some of it had stuck to my internal organs but all good news and go away and see you in 6 months. I asked about pain but she just said that with some people it can take longer to heal than others and if it continued to see my GP. Another month goes by and we are now in mid march and still I’m struggling. My GP contacted my consultant and he thought it was scar tissue as the tumour was stuck on the bowel and stomach and to take it gently. I started back at work on a phased return but I found I couldn’t sit upright for more than 2 hours without needing oxycontin (slow release morphine). I upped my hours to 3 per day but I couldn’t do it. Thankfully my employer was brilliant and we talked about ill health retirement which I then applied for. In July I had a colonoscopy to see if the inside of the bowel was damaged but it was too badly kinked to get the camera around so I had another one with a CT scan. I was referred to the pain clinic and interestingly enough I was told that he has seen a lot of people with pain after surgery and more often than not they have had post-operative infections. Anyway, he gave me a cocktail of drugs and told me off for not taking the drugs regularly enough so after about a month, the pain was relatively under control as I was taking the slow release tramadol and gabapentin and only taking the oxy as and when the pain got too bad. I went to see my urology consultant and asked him to talk through the histology report for me and my tumour was 15 x 10 x 8 so it was big (we affectionately called it my little honey dew melon J ) and I asked him to tell me straight and he told me that he had never seen anyone with a tumour my size where the cancer hasn’t come back. Quite a hard thing to hear but I am very pragmatic and need to know so I can deal with it.
Ill health retirement was agreed and I left the Diocese in September 2015. Being 46 I am too young to do nothing so I volunteer a few days a week. I do the school drop off and pick up (probably not for much longer as he is getting too big) and do what I can when I can. I have my 6-montly scans and now they have been moved to 9-monthly because of the risk or danger from the radiation.
Throughout it all I obviously worried about my son more than anything and I didn’t know what to say and how to say it. We told him I had a growth and that we didn’t know if it was cancer until they looked at it after the operation and he got that. We told him it was cancer and he didn’t take it brilliantly as in his school, one of the kids mums who had been ill, well she died of cancer on Christmas morning. They went running in to wake her and she had passed away – a complete nightmare and shock for everyone. Nick then realised how serious cancer was and it did freak him out for a while. I wanted help so rang MacMillan but as I didn’t have a referral, I couldn’t really access them for help. I didn’t know what to do for the best so decided on diluted honesty. We told him that it might come back, but it might not but if I’m not worried about it, he shouldn’t be etc etc. Not the best time as it was coming up time for his 11+ exam so it was all a bit of a mess really. After about 6 months he is fine with it all but that has been the hardest thing with it.
You always hear about people who have been ill who have taken stock of their life and I feel like I am one of them. I am much calmer, things don’t phase me as much as they used to. I sort of live for the moment but life is good. If the cancer comes back I’ll deal with it then but I’m hopeful that I might be one of the ones it doesn’t come back in but if I am, c’est la vie.
As I had no support or advice from anyone, when I found the KCSN it was amazing. Here were people who understood, who had been what I had been through and just got it. It was amazing. I know I can log onto Facebook and can ask the silliest of questions and there is always someone who can help. It has helped me no end and maybe it is part of why I am ok with it all – in this group there are so many people much worse off than I that I am so lucky in comparison and it keeps it real for me. One of the best parts was it told me what questions to ask and not to be backward in coming forward. All of this has stuck with me and I am eternally grateful to everyone who has a hand in this amazing group.