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My complete lifestyle change
I am a 64 year old ex mental health social worker who took early retirement. My ability to move quickly or get up from seats quickly was severely compromised by arthritis. I had been assessing only in hospital as my mobility worsened .My hips were operated on and replaced eventually but occupational health did not think it reasonable for me to return to my original community position. I was offered early retirement at 60 and took it
I had always owned horses and had found someone (14-year-old Emma) to help and exercise my horse while I was unable to ride for a few years. I did have to get an easier horse to ride ‘post op’, one who was more reliable. I tried to remain active as possible as I enjoyed riding and just being around horses in general. Emma helped, rode and came to shows etc. with me and we shared competing at riding club locally.
It was a day in late November 2010; I was in Coventry with my young friend Emma. (now in her twenties) and we were trying horses as my horse, Taylor, had died in a very traumatic manner of a twisted gut in September.
We looked at one or two horses and Emma, being very protective of me because I have artificial hips, insisted on getting on the horses first. One took off before she was in the saddle and she fell! There was one we both liked the look of so, she rode it first and when she was satisfied it was safe I went to mount. Unable to get on from the floor I went to the back of a lorry and stepped up onto the ramp. As I did so, my left leg just collapsed inwards at an obviously incorrect angle. There was no pain just this twisted leg on the ramp, unable to bear weight, though my right leg remained upright and supported me.
Looking at my leg the horse’s owner actually retched, and I remember looking at it and saying; “Oh I think that may be dislocated!”. Hopping backwards, I sat on a chair while Emma wanted to call an ambulance. I did not want a surgeon, I had never heard of trying to repair my hip. I had already had one consultant say he was not prepared to operate on my hips even when they needed to be replaced. I just wanted to go home to Cardiff.
Reluctantly Emma helped me into the front of her Fiesta, wedging my leg with a horse blanket as it seemed to want to wobble about. The journey was a nightmare and the pain was quite bad. Although it had not hurt at first, I think I had been in shock and not thinking straight.
I was informed after the X-ray that it was not dislocated but broken. I notice they asked me a few times how it happened and repeatedly asked if I had fallen. Emma, who had whiplash from her fall, did comment we were like a pair of crash test dummies.
I was in the hospital for 11 days waiting for a bed in the specialist orthopaedic unit where my original surgeon operated. I was informed after this latest operation that I had lost some bone from my leg and they were unable to replace it. As this part of the bone contained a muscle attachment, the muscle had to now be connected to another muscle and not to the bone. This meant I would have a bad limp. I now had a very large implant with a cable around the top where bone was missing. The doctor mentioned that some of the tissue had been sent for testing but I was half dozing at the time and it did not really register.
I spent another 11 days after the operation in hospital, 9 of them on bed rest as I had to have a brace custom made to stabilise the leg until healing took place.. I was on crutches and barely mobile but it was snowing hard and they didn’t want me to be snowed in, so I was discharged on December 18th 2010. My partner and I had not been getting on at all well and in a fit of temper he left and went to his daughters leaving me snowed in and quite unable to do much or get out to shops etc. Family and neighbours shopped for me.
A friend with a 4×4 came to get me Christmas Eve and took me to my daughters for Christmas Day.
On January 24th, I attended my follow up appointment; alone, still on crutches but getting more mobile as fast as I could. The specialist registrar, who I remembered from the ward, saw me. He informed me they had found cancer in the bone they had removed for testing, I was totally numb as I had only expected a routine follow up. He said they did not know where the cancer had originated but that this was a secondary tumour and they were unsure if it was kidney or bladder cancer but wherever it was, he had to inform me it was advanced already.
I remember crying and thinking I hope it’s my kidney, I have two of those! He was as reassuring as possible but it was a huge shock as I had not been unwell at all. I had been exercising other people’s horses and in September, I had travelled to America by myself; my femur could have broken at any time! I had absolutely no reason at all to think I was unwell. I had another USA flight booked for March.
It was a whirl of appointments after that; off for an MRI, a CT scan, a Gamma scan and an appointment with the Urologist. He told me the cancer was in the kidney on the same side as the broken femur and asked if I wanted to see the scan picture. To me, the tumour looked bigger than my kidney. He said he was unsure if it was in my best interest to operate to remove it because of the previous major operation to repair my leg, and I was 64 years old. My daughter was with me and said I was active and healthy before my leg broke and I added that I was riding, competing and mucking out my own stable before this all happened. Thankfully, he agreed to operate but left it until March, giving me time to recover fully from the leg operation.
I was introduced to the Oncology Consultant who would be undertaking my ongoing cancer treatment as well as being given lots of literature to read and information which included phone numbers of Macmillan nurses should I want to speak to anyone.
My kidney was removed in March 2011 without any complications and I recovered well from the operation. I had one radiotherapy treatment on the leg that broke just in case, although the surgeons were sure they had gone far enough into healthy bone. I did have an episode of pain where, due to the bone loss, I had a cable around the femur to ensure stability but it didn’t caused further problems.
They monitored me every six months through CT scans, and I had a monthly appointment at The Velindre, Cardiff’s dedicated cancer hospital. I understood my cancer was clear cell renal cancer grade two and stage four. I seemed to have no active tumours. I was prescribed a three quarter dose of Sutent after about a 18 months which I did not tolerate well. This gave me a sore mouth and sore feet but most troubling was catastrophic diarrhoea, which resulted in me losing 8lbs in weight in a week.
Following this, I was prescribed Pazopanib going to three quarter dose. I had diarrhoea but it was manageable. I did begin to have some fleeting chest pain, always when I turned over to sleep and this seemed to coincide with a small, unidentified nodule close to my spine, behind my lung on the right side which was subsequently removed via thoracotomy in October of 2013. This was by far my worst time; I was in unbearable pain after I got home and ended up in A&E twice in the early hours of the morning.
My emotions had been all over the place so I spoke to my GP who prescribed an activating anti-depressant and counselling which helped with my mood and enabled me to speak to my daughter, who lives close by, about the things that concerned me.
The lifestyle change was a huge blow. I am not as active as I used to be because of my mobility problems, I cannot ride or even stand close to horses now in case I fall or get bumped but I do watch friends compete if there is seating available.
I try to stay active and attend weekly exercise classes after hours at the hospital hydrotherapy pool which are physio led and keep my joints moving. I also attend a weekly aqua aerobics class at the local leisure centre.
I find information takes the sting out of things and keeping informed about what is happening with my treatment is paramount for me. My consultant outlines options with the pros and cons explained and if he has strong views about a particular course to take, he will share his option but does not impose it. In the same way, if he has no strong opinion on the course I need to take he outlines things and discusses it. He always gives reasons for his decisions and explains things fully and he is always accessible. If I contact his secretary, as I did when Sutent made me so ill, he makes himself available and sees me at his weekly clinic. He has even rung my GP to discuss medications I needed that were not cancer related.
Continuity of care has been reassuring; availability of appointments has been amazing
and the information and updates by various forums and organisations dealing with this horrible condition are a great help. I attended the patients day in London with the Kidney Cancer UK and meetings other kidney cancer patients face-to-face was brilliant, as was the information we were given. I belong to the Facebook group that supports patients and carers, and made friends with some members from my area. We are meeting for lunch again soon.
I am hopeful for the future, but under no illusions as I know my condition is terminal but so is life itself. None of us survives life and I have just had to face up to my mortality in a way I had not before. I don’t dwell on it, it’s a fact, but then it always was, albeit not acknowledged by me before. I plan ahead, but I also enjoy the here and now. I am off to the cinema most Mondays with a good friend. Your good friends are so helpful, so keep them close and always make new ones.