So here goes nothing…..
Firstly I wanted to say a huge thank you to everyone stopping to read my story. I know there are 1000’s of us out there asking for your help. It’s a very unusual experience having to ask for help in such a public fashion, but sarcomas don’t discriminate. Sarcoma’s don’t care about humility. Sarcoma’s are a challenge that I don’t think anyone can ever really prepare for.
Almost 13 years ago I was diagnosed with a very rare form of sarcoma called Aggressive Fibromatosis, or better known as a Desmoid Tumor. Most people have never heard of a Desmoid tumor, and that’s not surprising as every year only 3 in 1 million patients are diagnosed. That’s about as rare as a nun in a bikini right :)
Jokes aside; given the rarity of this condition, most doctors have very little experience in treating desmoid tumors. Desmoid tumors are extremely aggressive and like an octopus wrap its tentacles around surrounding vessels and organs at a very fast pace which causes major issues within the body.
Mine was first discovered on my upper right arm when I was 16 and resembled the size of a pea. Being 16 and still a minor, doctors put it down to growing pains. Within 2-3 months this has gone from the size of a pea to the size of a golf ball and the pain was unbearable. My GP referred me for an MRI as they then thought it was a lipoma. The MRI suggested it was a sarcoma and I was referred to the best children’s hospital in the world; Great Olmond Street Hospital. Over a year with a biopsy and test after test they concluded it was Aggressive Fibromatosis. Good news…it’s not a cancer. Bad news…there’s no cure and little research on how to treat it, only an operation. So I had the operation, not once, not twice, but four times between the ages of 16-19 years old. What I didn’t know at the time was that there was a high % that once operated on the tumors would become more aggressive!!!
After unsuccessful surgical procedures and after the fourth operation,the professionals opted for radiotherapy. This was because there was no more muscle which could be taken for them to operate on. I was referred to Addenbrookes hospital in Cambridge for a course of Radiotherapy. I was young enough (and foolish enough) to still be working full time and rushing before and after shifts to Cambridge for treatment and then coming back to work. I was exhausted. Finally treatment had finished and I was ready to continue living my life and had plans to start travelling. Very soon after landing I really saw the side effects of radiotherapy. The skin burns were red raw, peeling skin was not a very pleasant experience, and skin excretions. Some days were so difficult I couldn’t tie my own hair or put on my own bra. After a few weeks/months rest this did subside. Great, I have beaten this once and for all I thought. Unfortunately the battle wasn’t even near over….
I discovered more pain, swelling and a new lump when I was in Australia. I managed to control it as much as I could until my lump grew over two weeks and had oedema swelling all over. I was sent home back to my consultant. My worst fear was confirmed, it is active again and growing. This time not in my arm, it had spread to my back, neck, breast wall and all over my scapula. Desmoids are dangerous when not treated in the same manner as a cancer. Thus I was immediately put on chemotherapy to stabilise and stop it from growing any more. During this time I wasn’t able to work; it had finally got me. Two weekly trips to have a drip of chemotherapy infused into me over a 6 month period was mentally, physically and emotionally draining. This on top of nausea, sickness, fatigue and a low immune system left me pretty much bed bound most days. The worst was having to deal with plantar/palmer which I still experience even to this day which caused my hands and feet to blister up like 3rd degree burns. This showed for little improvement, other than slowing the growth down minimally.
So it was onto the next treatment, another course of chemotherapy, but this one was more intense. I had to have a port device fitted by making an incision in my opposite arm and them feeding a tube inside the skin to sit above my heart. This was then connected to a ‘’balloon’’ of chemotherapy which slowly infused over a 7 days period. Once it was emptied it was time to go back to London and get my ‘’Jungle Juice’ as I called it refilled for yet another 7 day infusion! Side effects were pretty gruesome with hair thinning, again planter/palmer, and loss of appetite, nausea, sickness and fatigue. This time I managed to continue this with working full time and hiding it from my colleagues and friends. This was only on a need to know basis I thought to myself. Well that was off course until my employer discriminated against me for having 2 days off from work because I had an allergic reaction to the chemo and was hospitalised as a result. Only for when I challenged them why they gave me a disciplinary the response was ‘’but its not cancer’’. Now I know what you’re thinking; disgusting? Disgraceful? Where is there remorse? Well I will touch on that with my blog I intend to start. But can I just say this is the most heavily frustrating thing I hear. Yes it may not be the dreaded ‘cancer’, but in fact it’s more aggressive than a cancer because it doesn’t respond to anti cancer treatments! The amount of times I have wished this disease was a cancer (and I wouldn’t wish that on anyone) just so there was a cure is a very dark thought!
People are very quick to dismiss my condition because the ‘C’ word isn’t involved. People don’t really understand what the big deal is if its ‘just’ a benign tumor; they don’t understand why its so physically, mentally and emotionally difficult. The argument is I have the same treatments, stress, scarring and pain as any cancer sufferer? I see an oncologist and have a high rate of reoccurrence, but we are left in this limbo world of being told its not cancer but its often more destructive?
After all of this, there was minimal improvement in my condition and I didn’t feel benefits outweighed the costs for what I was going through at just 25 years old. I finally reached breaking point and so I decided to take control of my health. Against my consultants advice I stopped all treatment-Surgery, Radiotherapy, Chemotherapy because of all the toxicity this was causing my body and opted to go back to basic where my heart was comfortable; the holistic/complementary therapy approach!
Lots of rest, Aromatherapy, massage Yoga and a diet change saw me control the tumor as best I could and saw me 18 months growth/tumor change free.
A recent stressful fight with the government about this has triggered re-growth. The concern of consultants, friends, family and myself is that it is again growing at a rapid rate and there is fear the tumors ‘’tentacles’’ will attach to my spine and vital organs.
The frustrating this is that the NHS cannot help me anymore and they have used all of the treatment methods available. The tumor is also inoperable. Through the magical mystical world of the internet I was able to connect with other patients with the disease and get a wealth of knowledge of information not just from the UK, but all over.
I was graced with connecting to an online community of fellow warriors and with the efforts of the DTRF (Desmoid Trust Research Foundation) they were able to offer more information. These forums provide support for patients, care givers, physicians, friends and family who can understand the struggle of Desmoid sufferers.
There is however a new treatment called HIFU. It has been proven to work in over 90% of desmoid suffers like me whereby the treatment shrinks and sometimes even eradicates the tumor. It also has up to 80% reduction in the tumor size. There are currently 3 Proffessors who carry out this treatment worldwide; California, Melbourne and London. I have been lucky enough to get in contact and have a consultation with the Professor based in London who is happy to do the treatment, but it is not available on the NHS. The cost of the treatment is £9,000; so not cheap by a long shot. I am hoping that my sharing my story and reaching out to friends, family, and friends of friends and family to support me in which way they can.
So here I am asking if you can help? If you cannot make a donation, then please share my story and help me to continue raising awareness and to win my battle against this nasty disease. I promised to post updated, videos, and all posts about my journey. I am even in the process of starting my blog- so please check it when you can if you want to find out more updates.
Writing this was difficult for me because I’m a very strong and independent person and asking for help (especially financially) doesn’t come easy for me. But truth be told I need all the help I can get. So thank you from the bottom of my heart for caring and taking the time to read my story-and maybe even donate!
Ding Ding-Round 6 fight with Fibromatosis I am ready for ya :)
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