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Louise Cook

2016-05-12 10:52

Sue's story


As a kid I was taken to my doctor numerous times with pains in my legs and arms in the winter: it was passed off as "growing pains". It was only as I got older and started keeping a diary that I realised I always got these pains preceding a period of snowy weather. I came to realise my pains were often more accurate than weather forecasters, and still are to this day. Interestingly my Scottish Grannie was known as a "weather witch" as she seemed able to predict the weather. When I asked her about it she said she “felt it in her bones".

20s to 40s

In my 20s I started developing odd allergies and reactions to medication. I was prescribed the pill when I was 23 for heavy periods and had major problems with it. I battled on, swapping brands and dosage for 8 years eventually giving up and having several D&C operations and having a full hysterectomy age 47. Throughout this period I had regular pains in my lower back/ pelvis and hips that was thought to be as a result of standing all day at work, period pain, being overweight, exercising too much, not exercising enough etc etc. I was taking 8 paracetamol most days.


In my 50s the pains in my right hip reached a point where it was affecting my daily life. I worked full time in a job that meant a lot of traveling and a long drive would leave me doubled over with pains in my back, knee and groin. After pushing for X-Rays I was advised I had moderate to severe wear and tear in my right hip, but that I was too young for a hip replacement. I was given anti-inflammatories and told to lose weight.

This went on for several years until I begged the doctor for help as the anti-inflammatories were making me feel so ill and so he sent me for physiotherapy. The physio took one look at me, gave me a pair of crutches and sent me back to my doctor stating I needed urgent referral to a hip specialist. The consultant said I needed a hip replacement but, due to my age, the consultant tried steroid injections into my hip first. Initially these gave some relief but after the 3rd one the pain relief only lasted about a week to 10 days and he agreed to do a full hip replacement.

Recovery and Foot Issue

While all this was going on I noticed a small lump in my left foot. After x-rays and an ultrasound it was identified as a ganglion cyst, which was probably caused by my hip problems. Initially painless, it started to become more and more painful and swollen as time went on. I was 57 when I had my hip replaced: I remember practically crawling into the hospital I was in so much pain, despite all the medication. By this time I'd had a severe reaction to Naproxen and had been advised never to use any NSAIDs in future. The relief when they got me out of bed following the op was indescribable. The awful gnawing pain in my hip had gone, as had the pains in my pelvis and back. Even though there was some pain from my operation site and a huge 12" scar it was like being totally rejuvenated. It was amazing!! Pain relief was proving to be a problem. I reacted to most morphine-based drugs, and to some antibiotics. My main pain relief was paracetamol.

I then had a golden period of very little pain apart from a few non-specific aches and pains and the troublesome ganglion in my foot. I'd discussed having it surgically removed, but my hip consultant had recommended that I wait till at least 6 months after my hip replacement to have it done. My only other issue was the draining fatigue I felt. Initially it was put down to recovering from the hip operation, later my doctor discussed the possibility of it being due to depression when blood tests ruled out other causes. I also had a slightly raised liver function test result which had shown up a couple of times before and then dropped back to normal: this was put down to the pain medication I was taking at the time.


The pain in my foot increased to the point where I could hardly put my foot to the floor. I was referred back to the podiatrist to have the ganglion removed (March 2015). After the op the podiatrist surgeon commented that he thought he had removed it all though "it didn't look like a ganglion" to him. He wasn't sure what it was, possibly inflamed tissue, and sent it off to pathology as normal.


The pain in my foot subsided quickly and my recovery was uneventful. They removed my stitches; I had a very neat scar, no pain at all. I was really happy. Then they told me the pathology report was back and I had malignant sarcoma. I'd never heard of sarcoma. They explained that it was a very rare cancer and they referred me to the regional sarcoma team. They also explained that I might need further surgery as they had operated to remove a ganglion and sarcoma surgeons would look to have a wide margin excision.


For the next few weeks my feet didn't touch the floor. A whirl of appointments, x-rays and scans identified that I had monophasic synovial sarcoma and a further area of suspicious tissue. My advised option was a below the knee amputation. I fought against this option. I knew that would put unimaginable stress on my relatively new right hip replacement, and in the end the orthopaedic surgeon agreed to carry out an amputation which would leave half my foot (lengthways) and my ankle intact. So in May 2015 the operation went ahead and I spent the next 7 weeks in hospital. I suffered with phantom limb pain as well as pain from the operation. When I started walking again it caused lots of problems with my right knee and hip. I get a lot of pain in my lower back and pelvis which is caused by my different walking gait. I've also been advised I will need my left hip replacing fairly soon. With intensive physiotherapy I've progressed from wheelchair to Zimmer frame to two then one crutch and discovered a whole raft of pain medication I react badly to.

Chronic liver disease

Further tests on my liver function indicate that I am in the early stages of a rare auto immune condition called PBC Primary, Biliary Cholangitis. Symptoms involve aches and pains in joints, inability to tolerate medication, and it is associated with arthritis and other auto immune disease.