Sarah s Story I m Sarah I am 34 years old, I have a Partner called Andrew and an 8 year old Daughter called Taylor, I would like to share my story with you. In 2011 I started with a niggly knee, it was affecting my daily life and my job as I worked with toddlers, so you can imagine I was up and down all the time, always on the go! I was told I was suffering from housemaid s knee!!!! So to cut a very, very long story short, I had 3 operations on my right knee (2 key hole surgeries & a manipulation) I was still the same if not worse but I continued to work dealing with a lot of pain, I can remember on my lunch breaks sitting with my leg up with an ice pack on it. I had a terrible two year old at home so there was no rest for me. I was frustrated! Why isn t my knee pain improving? I was having lots of physio as my leg could only get to a 10 degree movement, the physio s couldn t understand why I wasn t getting a better range of movement, so I went to doctors and asked for a second opinion, so I was referred to Robert Agnes Hunt hospital in June 2014 after numerous scans, ultrasounds, biopsy, the dreaded MRI scans! I was told I had synovial sarcoma in my right knee This was a lot to take in after lots of tears and being angry why me? I m never poorly & never been in hospital I ve never smoked in my life!! I m only 31 what I m I going to do, what is Andrew and Taylor going to think of me? lots of things went through my head! A week later I went in to clinic and was told the only option I really had was an upper leg amputation, this was also a lot to take in as 3 years ago I was mis-diagnosed with housemaids knee and now I was going to lose my leg to sarcoma!!! I was booked in 2 weeks later for my amputation, I worked right up till I went in the children and staff at the nursery kept me going as well as my fabulous family. No one knew what to say to me when I told them everyone was in shock I didn t really know what to say either. It was hard to tell my daughter who was 4 at the time, we bought her a book about a bear losing his leg and my fantastic other half cut a dolls leg so it would be like mummy. Taylor wasn t too bothered when we told her we were more upset she asked if she could go and play, I can t believe how resilient kids can be, I did think
I was going to be a rubbish mummy as I wouldn t be able to do anything. I went into hospital the day before my surgery feeling very anxious scared fearful not really sure how I should be feeling. Jane (Macmillan nurse) had arranged for Andrew and I to meet with Ian (who you all know from the Sarcoma group) Ian had a hip amputation the previous year. Ian was fantastic with us he was open, upbeat which really reassured me and made me feel better when Ian told me about his life and he was leading a pretty normal life (does anyone really know what that is anyhow?) I m still in regular contact with Ian now, keeping each other up to date. Thanks Ian, you really did help me xx Later that day Andrew left me in my side room on Ludlow ward which I have to say was brilliant!! I started to feel yes I can do this and I will get through it. The morning of my op arrived I could smell the toast but knowing I couldn t have any was making me more hungry! So off I went to theatre all marked up so they knew which leg they were taking away!!!! After lots of attempts to take my blood my veins are a nightmare, then I counted down 10, 9, 8, 7 I was coming round from my life changing operation and instantly I was so glad I had no more pain in my knee I asked to look at my leg I was fine and actually felt relived. I had mirror therapy which really worked for me even though it was strange looking in mirror and seeing 2 legs again!!!! Also had a nerve blocker/catheter to help with my phantom pain as suffering bad had a high dosage of pregablin! I would feel my leg was there at night and have to check would have pins and needles in my foot but wasn t there The pain nurses were a great help. I think it was a week after surgery I was taken down to physio I got to walk with a blow up leg. This felt so strange I did a couple of steps it felt amazing it was crazy really didn t think I d be doing anything like this so soon. When family and friends came to visit me they couldn t believe how well I looked and how upbeat I was I was still Sarah. Taylor came to visit me she was a little wary more so of all the wires I was attached too, she was chatting away and after a while came and sat on the bed and looked at my leg she said you look like my dolly I was in for 2 weeks I had lots of visitors and that meant lots of goodies too, it was great to see everyone even though it did tire me out. The nurses were fantastic,
supported and cared for me so well! After 2 weeks in hospital with such excellent care and great food too! It was time for me to go home, Andrew had been busy building a ramp for me. Being home was a different story it was so easy at hospital now I couldn t even do the simple things at home, I had a bed downstairs as we live in a 2 bed house. It was so nice to be home though things were difficult at times we got through it, my door frames have certainly taken some bashing! I started physio a few weeks later they put me in a Pam-aid leg each week I got stronger walking up & down the rails, towards the end of October 2014 I got my own leg, I started to wear it an hour at a time to start with it was a great feeling to walk again. The limb centre is only place where everyone can get legless!!! I sit there some days and laugh too myself all these different legs in & out the workshop wondering whose will be the next one out It was frustrating sometimes putting it on properly or my leg would swell and lots of sores. My aim was to be walking by Christmas.. I did it with the help of my sticks!!! Had a nice new pair of converse for Christmas and also a nice new mobility car with hand controls that gave me my independence back after a few driving lessons I was back driving again. I probably over the last 3 years done more as it has made me realise you only live once and never know what s around the corner. I have been into Oswestry hospital to speak to a few people about having an amputation which I think helps them a great deal and also makes myself look at myself and think how far I have come. I have been to the theatre and concerts various times which I love, canal barge, camping, kayaking, I go swimming a few times a week its helps me exercise and relax. I have taken part in 24hr Relay for life with family and friends to raise money for a good cause, cancer research, I did as much as I could but my contribution was the cakes!!!!
I love to help volunteering for charities which I do often and I have been volunteering in my local Severn Hospice charity shop which has helped with my confidence and really enjoy meeting new people and working as part of a team again, and from this I have just started working again. I applied for a position in a new charity shop and got the post as deputy manager in Headway a charity shop for people with Brain injury. Taylor has adapted really well she is very helpful and calls my leg a special leg, I often find stickers or toys in my leg! She has become interested in para-athletes so we took a fantastic trip to London s Olympic stadium to watch the London 2017 paraathletic Championships. Taylor said I loved seeing the wheelchair racing so much and supporting team GB! Unfortunately I still suffer from Phantom pain, such a weird feeling such bad cramp, but can t wiggle my toes to get rid of it!!!! I often go to dry my leg with a towel after a shower or try and take my shoe off my other foot. Since My initial diagnosis, over the last 3 years I have had 2 nodules removed from my lungs unfortunately they were Sarcoma!!! But I tackled these head on and recovered well.
As we know Sarcoma is a rare cancer, I decided to do some fundraising and raise awareness by holding a prize bingo evening. I was so thrilled to raise 1,300 on the evening and a further 400 afterwards. So at the present day, I m carrying on with everyday life, I m really happy and enjoying life, some days are harder than others, and I do have to think about my day a bit more e.g. steps, slippy floors, wind, snow & ice!!!! I say everyday is a challenge!!! Without all the support from Andrew, Taylor all my Fantastic family and friends I couldn t have done it, I believe keeping positive has got me through it!