My name is Alexandra Pawley-Kean – here is my account of my experience with melanoma and the ensuing brain tumour, “Fred”!
I was born in 1970, and was brought up in a household of sun bathers. Burning was part and parcel of the annual summer holiday. A badge of honour! Being very fair skinned and ginger, we did take care to apply sun cream but wanting a tan, I probably missed applications.
One holiday I fell asleep in the sun – when I awoke my back was red and blistered, and on another occasion the fronts of my legs were split and very sore where the sun had burnt me. We sat in the sun all day, every day for two weeks solid. Holidays were always abroad. My father worked at British Airways so free overseas holidays in really hot places were available.
I was told that sun beds would stop you burning – I don’t need to tell you what happened! For weeks before the family holiday, I used sun beds as often as I could. For my 21st birthday I even asked for and got a sun bed which I used continuously. Daily sessions ensued, oblivious to the dangers, this carried on for years.
A few summers later, I felt what I thought was a small bite on my back, applying TCP daily did not help. A friend looked at it and her worried face raised concerns. A doctor’s appointment was booked and the ‘bite’, which was diagnosed as a malignant melanoma, was removed along with associated skin in the surrounding areas. I still sun bathed as no further advice or treatment was mentioned.
About two years later, following a hip replacement I found a large lump in my armpit.. Thinking I had pulled a muscle due to the extra work my arms were doing post operatively, I left it … When I asked my husband to feel the site and give his honest opinion he swore at me and a doctor’s appointment was booked immediately! Within weeks, I was seeing an oncologist having samples taken and was booked in for a complete lymph node removal as this too was malignant. The entire cluster of nodes was removed and further appointments and scans taken. I was referred to the team at Guildford. PET scans were taken every 3 months following surgery and all was well for a couple of years.
Last year, in June 2016, I began to feel very unwell. I couldn’t understand what was happening to me as this had literally taken me off my feet. I have a rare form of Muscular Dystrophy and nothing knocks me off my feet. Even 3 hip replacements, a fractured femur, broken pelvis and split knee caps did not, but this did.
Within 48 hours I was being physically sick – had a splitting head ache, couldn’t see properly, hear, walk, write, read, speak or have any cognitive understanding.
After an emergency GP visit I was diagnosed with an inner ear infection! After taking antibiotics and bed rest, there was a slight improvement. However, I still wasn’t me and still couldn’t function. My appetite had vanished and I couldn’t return to work.
As luck would have it, I had a scheduled routine PET scan and before I left the hospital it was agreed that I would make a further GP appointment as I was still feeling so very unwell. However, the radioactive injection which I had been given prior to the scan probably gave me a boost and I suddenly felt fine.
I went back home. I was up at 5.00 am the following day, I hoovered, mopped all the floors before 7.30 am and got ready for work. I left the house and have absolutely no idea how I made it to the office. When I arrived I couldn’t get out of the car . I was taken home by a colleague and told to stay there until I was better.
A few days later I had a follow up appointment with my Consultant Oncologist … the rationale behind my symptoms … Fred. A large tumour the size of a satsuma was sited in the ‘sea weed’ part of your brain. It had been growing for 4 months …a seed from the lymph node melanoma, and Fred had found a warm and cosy home to grow.
My reaction – a few tears, called my mum, swore, had an MRI scan, called mum again to make sure she was OK and then texted …
“I have been given steroids and stomach protectors which have sent me mental! They have helped, but I have an upset tum, a rash on my face and wobbly eyes (Fred was pressing on my optic nerve and nerves which help me to balance), have wobbly legs and am rather more driven than usual! My patience levels have dropped and I am very fed up with people asking if I am OK every 2 minutes, it does my head in!!
My headaches have gone, I can hear and speak and hopefully type without too many not-typical spelling mistakes! I am sneekily hoovering/mopping, I love a clean house and today has been an excellent day, I have bleached the kitchen to within an inch of its life and even cleaned the fridge! “
I have had wobbles – did a google search … why? Because I needed to know what would happen during and post op and what the risks were.
Work were amazing and told me to get better and get back ASAP! They paid me for 8 months at full pay allowing me to work from home when I felt up to it. Friends have been, to coin a phrase, totemazeballs and some comments have literally had me in hysterics. Well … that meeting with my Oncologist was a little more interesting than usual!
Fred was removed in July 2016. and I was scheduled to be transferred to the Royal Surrey Hospital in Guildford within two weeks for radiotherapy treatment to make sure every bit of the tumour was killed off. I then suffered three meningitis infections and was very ill and delayed in St George’s Hospital for 15 weeks. My husband was told I might not make it. As I had spent such a long time in post operative recovery Fred had regrown to its original size and it had spread to new sites in my body too.
When I was well enough to be transferred to the team at Guildford, I started a course of immunotherapy. That therapy took care of the additional tumours that had spread in my body and radiotherapy helped where new ‘visitors’ arrived in my brain! It has been a battle and my poor brain suffered as I had many set backs on my road to recovery.
Radiotherapy affected my hair – my husband shaved it off for me when it started to look really thin and patchy, vanity I know, but that really upset me! I’m happy to say it has regrown and is curly and thicker than ever before! Side effects have been minimal and I hope to stop all treatment at Christmas and see what happens!
Muscular strength is returning gradually and mobility is still a work in progress. Not hoovering yet but I will! I am still here … Gingers rule!