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.

This is my latest picture of my scar, taken today 13/4/2017, approximately 2 months and a week after my surgery. The scar is continuing to heal nicely and is a neat cut, there is still a lot of scar tissue underneath certain areas of the scar which I try to massage as often as I can/when I remember. I am still restricted in movement, I cannot completely bend my knee to do things such as kneel because of the swelling which is still present and again the scar tissue. I have now returned to work at my job as a care assistant and am getting on fine with my shifts, not experiencing any pain however I still cannot walk long distances without it aching. It seems I cannot do continuous tasks on it such as shopping and walking far but I am coping okay at work and am currently on a phased return which helps.

This was 3 weeks after my surgery, 1 week after the clips were removed. It's healed as a very neat scar, I personally am not embarrassed or shy about it, I prefer to take the perspective that it looks quite cool and is my war wound! At this present time I did not have much range of motion in my leg, I was walking fine but could barely bend it except to sit. There was also a LOT of scar tissue and swelling still at this point and massage does help with this as well as ibuprofen for the swelling and keeping it elevated when possible.

This was the day I got the clips removed, I think I had 24 clips in total and I am a bit of a wimp but it was painful for me, not excruciating but I did shout a little bit, best thing is to just clench your fists and countdown every time one is pulled out and psych yourself up each time, "you can do this you just had major surgery you can handle some clips being taken out!!" is what I was mentally telling myself at the time. As much as it hurts if you just grin and bear it its easily over within 5-10 minutes and then there is no pain!

This is the cast I had to wear for 7 weeks after my surgery, this was to ensure everything healed correctly as a lot of the tendons and ligaments etc needed to be cut and reattached, my bone also had to be shaved so it was a very difficult surgery and needed lengthy recovery. I was given crutches when I left hospital however only used them for around 3 days and then just hobbled about my flat until I got into the hang of walking straight again, it was difficult and restrictive to keep the cast on and many times I wanted to take it off and did! - which I do not recommend as I suffered from it. I felt like I could walk fine so decided to take the cast off myself and was fine until half way through the day I was limping terribly, very sore and in lots of pain so it is definitely wisest to listen to your doctor and not think you're superman/woman!

Not the most beautiful picture ever but my leg is heavily swollen in this picture, can barely tell where my knee is! But this is how everything looked after surgery, not a huge incision, probably about 6-7 inches my estimate, as you can see my leg was very swollen and its so pink because of the antiseptic dye put on prior to surgery so yep looks attractive. This was when I was getting my cast changed which I will show in the next post. The date of my surgery was 7/2/2017 and this is the morning after. My surgery lasted around 4 hours, was scary at the time as no further clear margins could be taken without amputating it but I am happy to say that I am cured now so it was a successful surgery and I don't want anyone to worry reading this. I was in hospital for 4 days and it was very painful to weight-bare on this leg, it was almost like a burning sensation but after about the second day this got better, using the crutches was also very hard at first and walking took a lot of thinking to make sure I was using my leg right but this was all normal and eased after a couple of days and I was getting about fine upon being discharged.

AFTER RADIOTHERAPY:
This is a scan I had taken after radiotherapy showing the size of the tumour, its quite difficult to see the size difference due to angle of the original scan however it does seem to have made a small difference at least.

My radiotherapy lasted 5 weeks and I was in everyday Monday-Friday. For the first week or so the appointment takes around an hour as an additional scan needs to be done each time to ensure you're in the right position for the machine, as you get used to the routine and radiographers the process becomes quicker and less scans need to be done prior to treatment as you begin to naturally lay in the perfect position, the appointments then last around 30 minutes. A mask is also created which can be seen on the table in my last pic, that is what I had to wear every day of my radiotherapy to ensure my leg was in the correct position each time. Something else to mention is I had to have 4 tattoo dots done on my leg to help mark how I should be positioned prior to my radiotherapy commencing, I'm not a big fan of needles but it was alright it's literally just a quick prick in several areas.

This is the bell I rang when I had finished my radiotherapy, its a really nice part of the hospital and always really warming when you hear someone ring the bell.

Zoomed in from the last picture, this is the cast I had to wear every day of my radiotherapy, I'll explain a little bit more about this now.
Before my radiotherapy began I had an appointment to get this cast fitted to the lower half of my leg and foot, my leg was positioned at an angle to ensure the inner part of my knee was as exposed as it could be as this was mostly the location of my tumour. The white section of the cast is just a plastic mesh sheet which is hard and flat to begin with then when heated in warm water or with a heat gun it becomes flexible and bends around the shape it is placed on. This can be done on various areas of the body, even face/head. It was then fixed with plastic bolts to the clear acrylic underneath it. This experience was again painless and actually quite relaxing in a strange way, nothing to be afraid of.

NEXT:
Next was radiotherapy, in some cases radiotherapy is done after surgery however in my case it was decided that it be done before due to the complicated location of my tumour and it's size. Radiotherapy was a breeze for me, aside from feeling sick quite often however, I wasn't sure if that was just travel sickness from getting a taxi there everyday and back (I live in North Manchester and was treated at The Christie's NHS Foundation Hospital which was fairly far to go everyday). I did notice a slight stiffness in my knee, more so than usual, which is a normal reaction to radiotherapy due to the radio waves thickening the fluid in your knee. I was also warned that my skin may become red, quite like a sun burn and I would possibly experience hair-loss in that area however my skin remained intact, to the surprise of the radiographers and I haven't experienced any noticeable hair-loss. Radiotherapy is a painless procedure, the common side effects are those that I have mentioned but patients do tend to also feel incredibly tired during it.

FROM THE BEGINNING:
This is a picture of my first ever MRI scan. At this point the doctors believed it was a cyst. I was booked in for an appointment at the hospital to get it drained (which was excruciating and needless to say - nothing came out!). From this, a biopsy had to be taken which in 2 weeks time would reveal that it was actually a cancerous tumour known as Synovial Sarcoma.

Welcome

Hi!

My name is Jessica, I am 19 years old and a survivor of synovial sarcoma.

I have created this blog to try and help people who may be newly diagnosed see what the treatment process looks like, my treatment plan was only radiotherapy and surgery however so I cannot comment on the effects of chemotherapy as I did not personally experience this form of treatment.
When I was diagnosed in October 2016 I couldn't find many resources on synovial sarcoma mainly because it is so rare nor could I find anyone who had openly talked about their experience, in much detail anyways. Anything I did read seemed quite scary as it was mainly accounts of people who had needed amputations, I myself was very close to this also however, it's not something you want to be reading when you're already terrified at the idea of cancer and all it entails. Instead I was seeking to see details of surgery, what the scarring would look like, how it felt afterwards, rehabilitation, etc. So this is what I am going to put across to you all now I have experienced it and am in the process of recovery.

Edit: Also feel free to comment on any of my posts and I will reply back to you if you have any additional questions, I will do my best to answer based on what knowledge I have!