My Sarcoma Story

Get comfortable…. Its quite a long story!

My cancer journey began when in June 2015 I noticed my right lower leg was begin to get swollen. I worked at a Theatre as a dresser which is a very active and busy job and means I am constantly on my feet, this is what I put it down too at first. However, my leg kept getting bigger. At the end of July my mum persuaded me to go to the doctors as she could feel a mass in my leg and so to could my Uncle who is a doctor himself. When we went to the appointment, the doctor was less than helpful; laughing in my face when I couldn’t describe the pain and to top it all off, when told that a mass could be felt she did not even so much as touch my leg. The result of this visit was I was prescribed Physio.

After only THREE physio appointments in which my leg still wasn’t being touched and I was just handed print outs of exercises I found impossible to perform, my Mum decided to pay for a private Physio. My leg meanwhile was now incredibly painful and very large. This physio was at least thorough; I had ultra sound treatment, acupuncture, massage and various stretching exercises. After a couple of sessions on my leg, she was re-assessing the condition and she could not feel a pulse in my foot due to the swelling. I was immediately sent back to my GP for an urgent referral with possible Compartment Syndrome. By now it was the end of December.

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I was referred to Hospital A (as it will be known) to a ‘leg specialist’. This appointment wasn’t until March 2016 when I had an X-Ray and was told “If you don’t hear anything – all is well”. 5 weeks passed and I had presumed that all was well. Then I received an appointment to have an MRI scan.The following day I received a phone call which just told me that they wanted to scan me again, which I was semi expecting as I was pre-warned by the radiographer. However, when I turned up to the MRI department they had no idea what I was talking about. It turns out I was to have a CT of my chest. I had lost it by now as I felt nobody was communicating with me what was going on and why these scans were being done. My mum, who was with me, I think knew by now what was happening thanks to her medical background. She obviously kept it to herself as I was beginning to loose it big time.

The following week, I was sat putting on my make-up in my room when the phone rang. It was the consultant from Hospital A. He firstly spoke to my mum and told her and then the phone was passed on to me. I was told exactly this; “You have a tumor in your leg, and it doesn’t look good”. So, first of all that’s breach of patient confidentiality as I am of adult age, and secondly, devastating news over the phone with no advice for what or who to talk to next. Unacceptable.

I was then sent to Hospital B which was such a relief in a way as we finally had some sort of support. I had a biopsy within days and within two weeks I received the bad news that I had cancer. This time however I was in Hospital B along with my Mum and Dad, Nurse Specialist and Consultant/Surgeon. I was diagnosed with a High Grade Soft Tissue Sarcoma and went on to have major surgery on my leg on the 17th May 2016.

It took a while before I could walk unaided, I spent months in a wheelchair and using crutches and for the first month or so I couldn’t even get to my own bedroom, having to swap with my parents who have a bedroom on the ground floor. Only a couple of weeks after my Op I had the staples removed, all 62!! After a while I began physio and hydrotherapy to get my muscles and bones working and moving how they should be. This was made difficult as the surgery caused some nerve damage to foot as well as there being a chunk of muscle removed. Hydrotherapy was really good, felt amazing to be weightless and really helped with relaxation as well as learning to walk again. I then began a 6 week program of Radiotherapy.

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4 Weeks after finishing Radiotherapy, October 2016,  I received a call asking me to go in for an emergency CT Scan, that evening. This was incredibly upsetting as I felt like I had finally finished treatment and was in the process of planning to go back to work. The following week I was told that there was a small nodule in my Right Lung, the Cancer had spread.  Argh! I had to then attend various meetings about whats next as well as suddenly at the age of 24, having to think about fertility. I was told I was going to need a strong dosage of Chemotherapy and because they wanted to start as soon as possible they didn’t recommend I start the IVF process as it is a timely process and would delay my chemo too much. This again was not something I even thought about and now my future was affected. But we plod on….

It is now February 2017 and I am just about to start Chemo #5 out of 6. I wanted to start a blog, not to moan about my diagnosis (Ive got that out my system now) but to talk about treatment and practical things which I myself could not find online. I want to talk about the effects of treatment, both mental and physical, which aren’t talked about much, if at all. I hope people find this interesting and somewhat helpful!!

Lindsay Kathryn xx

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2 thoughts on “My Sarcoma Story

  1. Inspiration Hope Kindness says:

    You are an inspiration! Stay positive and keep sharing your story. I had Ewing’s Sarcoma cancer 33 years ago and had chemo & radiation. I have extensive damage to my right leg from the radiation I had and 3 years ago, I broke the same leg and have had 22 surgeries in 3 years and have many difficulties but my spirit is still shining.

    I admire your courage!!

    Liked by 1 person

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