Treatment & Memories for incurable Sarcoma

Everyone keeps asking how they can help or they wish they could do something for me whilst I go through my cancer trial/treatment. And all the flowers, cards and chocolates etc have been super, but what would be really useful is train fares/taxi money, money for 1-1 pilates and all the other extra bits and bobs that we cancer folk try to keep us alive.

It's never crossed my mind to start a fundraiser for myself. It's never been about me. And I'm embarrassed that it is now. But being made redundant and being diagnosed with cancer near enough at the same time has been a huge financial blow. Trying to find a job when you are incurable is a tad difficult. Which is why I've decided to take the bull by the horns and set this Go Fund Me up.

For those that are new to my story and know zilch about me, here it is:

Whilst working as a medical secretary, in 2019, I started to experience pain in my right thigh. Due to an accident I'd had 2 years previously, I thought the pain I had was something to do with that, and as such I was given an MRI which showed up degenerative discs in my spine. My GP and the Spinal Consultants I worked for assured me that with rest, pilates and pain meds all should sort itself within time.

Before we headed into the start of the Covid-19 pandemic in 2020 the pain was becoming unbearable which resulted in me sitting up all night every night until the early hours of the morning in agony. Honestly, It was pain I have never experienced before and never want to again. As we headed into the first lockdown, I repeatedly asked for a Drs appointment to be told time and time again I couldn't be seen due to the pandemic and lack of PPE.

By April 2020 I noticed a lump on the top of my thigh and again contacted my GP for an appointment as something didn't sit right with me that this huge lump had just appeared. Again I was told I couldn't be seen and that more than likely it was a muscle that had gone in to spasm.

In May 2020 I'd had enough as physically couldn't function with the pain I was experiencing and begged my Dr to see me. He did and requested an urgent ultrasound as believed the lump was significant enough to be looked at. Quickly.

Within 2 days I was at the local hospital and had an ultrasound, x-ray and MRI all in one afternoon. It quickly became apparent that this was no normal lump and that actually it was something more serious.

What followed was a whirlwind of appointments, scans, tests and a biopsy which confirmed I had Paraseal Osteosarcoma - a malignant bone cancer.

As with any cancer diagnosis, my world fell apart. I stupidly "Dr Googled" and was faced with a 5 year survival rate. Sarcoma accounts for 1% of all cancers - it's rare and there isn't enough research or funding for Sarcoma patients.

On 28th July 2020 I was at The Royal National Orthopaedic Hospital, Stanmore where I had 22cm of thigh bone removed and replaced with titanium. I stupidly thought this was going to be a breeze as would mean my cancer was being taken out. But I was so very wrong. I've been badly affected not only physically (nearly 18 months on and I still can't walk without a crutch) but also mentally.

I was also made redundant in October 2020. 2020 really was an epic year - Covid, Cancer and Redundancy!!!

As with all Sarcoma patients, we are monitored every 3 months with Chest CT's as if our cancer is going to go anywhere it will go to our lungs. And unfortunately for me, in March 2021 I found myself in The Royal Marsden having a lung biopsy to confirm that the cancer had gone to my lungs and that not only have I now got multiple lung nodules, there is no treatment for me. And no cure.

The thing they don't tell you about when you are diagnosed with cancer is the financial burden - even more so with me being made redundant. I've been unable to get myself another job due to the amount of hospital appointments I need to attend, my current immobility and the fact that the harsh truth is that I don't know how long I'll be around for. . . . I also have this enormous guilt that everything financially has to now be heaped onto my husbands shoulders who is not only trying to work, support us as a family but care for me and mental breakdowns that pop up every-so-often. I'd love to be able to alleviate some of the financial worry from him.

I've been lucky enough to be accepted on to a trial at The Sarah Cannon Research Institute, Harley Street and have just started cycle 2 of a trial. We've no idea how many cycles I'll need or if this will even work.

With the future unknown, I want to do as much as I can to keep myself fit and healthy and am desperate to get back to my Pilates that I so love but I need either reformer sessions or one on one classes due to the many issues I have going on with my rehabilitation.

We've also two young children who are my utter world. In fear of what may or may not happen, we want to make memories with them. As such, we do go on free days out to the beach with a good old fashioned packed lunch in the car, but we want to be able to do more than that with them. Little things like bowling, swimming, going to a zoo etc but are just simply unaffordable for us.

If you've managed to read this far - thank you. Thank you for reading my story and if you do feel like donating I/we as a family would be eternally grateful.

Much love

Lolly