December 18th 2019

It has been 2+ years since I posted on this blog, I do not know if anyone will view it again, but just in case somebody searches those fateful words "synovial sarcoma" and happens to stumble across my blog I would like to give hope as I am soon to be 3 years cancer free in March 2020. Every scan since my operation in February 2017 has been clear with no signs of recurrence. I wish this be the case for everyone who has such an encounter. I still get what I can only describe as probable phantom pain in my right knee - the site of my cancer, more noticeable after being on my feet for long periods (I work 13 hour shifts), my skin is perfectly intact and my scar is now a white/silver line, barely noticeable but it never really bothered me anyway. I am now having check ups on my lungs every 6 months instead of 3, the anxiety when a scan is upcoming is still there and when waiting for the results but the rest of the time it is out of my mind and I am living a fulfilled life, always grateful. Best wishes to anyone who may read this for whatever reason you come across it. 

Opportunities!
I have been given the opportunity for my story to be used in the latest Sacroma UK campaign taking part in July 2017. I had to summarise my experience in around 400 words (I think I went a little over though) and include pictures of my journey also. I'm really excited that I can further get my story out there and help more people get diagnosed sooner and better the outcomes for those experiencing sarcoma. My story was a positive one that I am forever thankful for but not everybody else's is unfortunately so I am really hoping this campaign will help raise as much awareness as possible! ❤

16th June 2017
An update of my scar. This picture was taken today on the date stated above, roughly just over 4 months since my surgery. The scar itself is still very pink/purple on some days like today but other days its rather faint and a more light pink colour. My knee area still looks quite odd, there is a lot of swelling still which I've been told is normal but it can particularly be seen more towards the bottom of my scar after the knee cap, it doesn't look this prominent when bent however. My range of motion is still quite limited, I still cannot kneel and it is very difficult to cross my legs  (when sitting on floor for example) however I can cross one leg over the other. I can sit with my knees up but I am limited on how much I can bring my knees to my chest, this limitation could be permanent or temporary. I am now able to walk and even run up stairs now and back down which is something I was not able to do a couple of months ago.

Trip to Thornton Hall Hotel and Spa

On the 30th May - 1st June I was invited to go on a trip with 8 other girls who had gone through various other forms of cancer, the trip was organised by The Christie's due to the generosity of people who have donated to the hospitals charity and by doing amazing things such as completing marathons and skydiving all in the name of charity and to not only find a cure for the many types of cancers there are but also to enable children and young adults to have wonderful experiences that they may have never been able to afford or had the chance to do. I would like to say a huge thank you to the people that continue to donate to charities like The Christie's and many other cancer charites and say how truly appreciative I am of this experience.

Hey! In case anyone affected by Sarcoma (of any sub-type) didn't know, there's a really nice page called Sarcoma Voices where you can post a picture of yourself or whatever you'd like to post it of which relates to your journey/condition and write a little message about your diagnosis/experience. There are over 500 posts on this site last time I checked and its really nice to see pictures of and read messages of people who are in the same boat or have been there, done that. I think its also nice to put your little stamp on the page and it feels like a little community. Just something I found quite nice to do. Here is the link if anyone else wishes to do so:-) http://sarcomavoices.org.uk/

What To Expect After Cancer

For me I found transitioning back into normal life the hardest, it was hard for me to give up work and go on sick but it was even harder to resume this and be "normal" again. I chose to go back to work before my final sick note ran out as I felt I needed to do it at some point, I did return on a phased return and am still on one now after 2 weeks of being back and will continue to be for the rest of the month. It was also hard carrying so much despair, as people viewed it, to then nothing, like you're just ordinary you again and there's no worries or fear, I mean this should be a great feeling right, but it just felt strange to me. For 5 months I had been in this whirlwind of cancer and getting treated and the ifs and doubts you have in the moment of will it work, will I be okay? to then, oh, that's it. But I think this is something that's hard for some people to understand that its not it, you're still tied into regular check ups for 10 years, you still have those internal worries of if it'll come back, of course you can't live your life worrying about this but its just there, in your unconscious mind still.

I think its best to have something to focus on, an ambition to set your mind on. I'm currently studying to become a nurse and will be beginning my full proper degree in September this year (2017) and that's what keeps me happy and motivated, and now I have this blog to hopefully help other people who may end up experiencing the same thing.

I remember being told by my specialist nurse there would be a come-down period and there sort of is, so just be aware any sad or low emotions you may be feeling even after overcoming the cancer are perfectly normal and I think they are part of the healing and digesting process of it all.

Please feel free to comment your feelings or experiences after overcoming cancer.

How I Knew Something Was Wrong + Story Leading Up to My Diagnosis

This is something I haven't really addressed yet but I feel could be useful and important to people which is how I knew something was wrong - not specifically knowing it was cancer but knowing something was not how it should be and also how my concerns were dealt with before a final diagnostic was made.

For years I had this ache in my knee, feeling more towards the inner side and the back, it would ache and be difficult to walk straight after sitting for a certain period and upon standing up I would have to take a few moments to straighten my leg and move it before being able to walk comfortably. Another thing would be when sat next to someone, if they were to put their hand on my knee to help themselves up, as people do, it would be excruciating and I would actually scream out sometimes. This is of course when I knew I had SOMETHING wrong in my knee area.

I went to doctors on several occasions regarding it and would just have it dismissed as "general aches and pains" "carrying too much weight" "poor footwear" etc etc. Taking this on board I would vary my footwear, went to the gym and tried to lose some weight (even though I'm not particularly huge) and it never went away. Due to being dismissed on such a number of occasions I just decided to ignore it myself and took it as that's the way its meant to be, until one day after I had changed doctors due to moving I received a phone call asking me to make an appointment and come in, so I did. I was sat in the waiting room, the doctor that was seeing me was running late, I didn't even know why I had to be there so I was even thinking of leaving before my name was called. Then once entering the doctors room the doctor prompted to ask me "Right Jessica, what brings you here today?", I was baffled, I explained that I had received a phone call to make an appointment, bla bla, she checked my records and couldn't find any problems so more or less the appointment was over however I decided to give this issue with my knee one last shot and told her about it. Her initial reaction began the same as the previous doctors but she then asked what it is like when I sleep, I explained its very hard to get comfy to fall asleep due to the stiffness and aching of it, after that she decided to send me for an MRI scan however only to "rule things out" still thinking there wasn't anything too serious.

The MRI scan came back and doctors at the hospital initially diagnosed it as a cyst, I began to read upon this at home and it did sound incredibly similar to the symptoms I had, particularly the baker's cyst, so I accepted this. I was then made an appointment to have a guided ultrasound injection i.e. have it drained. This experience as mentioned in one of my very first posts was probably the most painful thing I have endured, even more painful than the after effects of surgery! Of course nothing came out as we later found it was a solid mass of a tumour after taking a biopsy and that is what began my cancer journey.

This whole process listed above went on for years if counting the times of being dismissed but then around 7-8 months from the very first MRI scan before I was eventually diagnosed.