I feel like this cat is an apt representation of me and the doctors before all of this - I avoided going at most costs. Or me and needles. I hate the damn things.
This topic is a bit of a dampener on the Christmas season, however, it was exactly this time two years ago when I was in the midst of a rather stressful diagnosis process - so what better time to write about it?!
It is the diagnosis of Sarcoma, and particularly mine that is one of the the biggest issues with this rare form of cancer. Because it is a largely unknown cancer, it is often ignored or mistaken to be a cyst, or any other kind of benign lump; as most people know, an early diagnosis of cancer is integral to recovery.
According to the Sarcoma UK website, "Sarcomas are rare cancers that develop in the muscle, bone, nerves, cartilage, tendons, blood vessels and the fatty and fibrous tissues." That's a big list isn't it?
Sarcomas can literally develop anywhere on your body which is why it is so so important to not only regularly check your boobs and balls (excuse my language), but also be aware of your entire body. The bigger a lump gets, the more likely it is to spread, and the more difficult it will be to treat. The majority of people with ASPS (my type of cancer) already have metastases at the time of diagnosis because it is such a difficult cancer to diagnose, and in some cases the secondary cancer is discovered before the primary tumour, by which point the tumour is often too large to resect.
I first noticed my lump when it was about the size of a pea. I can't remember exactly when but it was about a year and a half before I took myself to the doctors. Me and my family were aware of it but I can't say we were worried about it. It wasn't until the summer of 2015, aged 17/18, when I put on a vest top and looked in the mirror, that I realised the lump was now big enough to see from a distance. I told my parents, and spent most of the summer showing off this cool addition to my shoulder to my close friends. We all deliberated over what it could be, and I'll be honest the idea that it might be cancer never crossed my mind. That may have been different for my parents.
Eventually towards the end of the summer I decided to go to the doctor - I wanted this ugly lump removed. I told them about how long I'd had it, they asked a lot of questions - did it hurt? Did I hit it on something? They had a good old feel and decided it was a cyst and if I wanted they could remove it under local anesthetic - great!
So I went back for the surgery, quite content, when the surgeon looked at my lump and said "oh. It's a lot bigger than I was expecting I'm not sure I can do that here! It's my first day." She consulted another doctor, who came in to look at my shoulder. By this point I was getting used to my left shoulder being a bit of a spectacle. They decided it was a lipoma and described to me exactly how they were going to take it out. Of course I squirmed and decided to reschedule the surgery for another day with another doctor. So off I go again a week or so later, on the bed, ready for the surgery. But after they injected me with a hella lot of local anesthetic I completely freaked out, had a little bit of a panic and realised there was no way they were cutting into me whilst I was awake. They referred me for an ultrasound so they could find out whether I could have the lipoma removed under general anesthetic. I spent the rest of the day feeling very sorry for myself, but little did I know my cowardice had saved me a little.
I started university, and waited for my ultrasound. Everything was grand and I still wasn't worried, by this point it was just a little bit of an inconvenience. I traveled back to London after only 2 weeks at university, and my dad took me to have an ultrasound. The man who looked at my shoulder did not look all too pleased, saying that the lump looked a bit odd and that I needed a 'urgent referral'. I think this was the point we started worrying, but, I returned to uni, still rather content, and had a bit of a mare sorting out signing up to a new GP and getting the correct referral.
The GP from home called me and told me that he was sure it wasn't 'cancer' but that I needed to ask my new GP for an 'urgent cancer referral'.
As I've said in a previous blog, actually using the word 'cancer' proved quite an issue, My new GP decided the issue wasn't urgent, and instead of the correct referral he sent me to have an MRI. Annoyingly it was about a 4 week wait for this scan. A friend very kindly woke up extremely early and came with me for this scan. For someone who has hardly spent any time in hospitals, and never had any scans or even health issues before this was quite daunting. Luckily the dreaded cannula and radioactive dye injection was avoided (but unfortunately later to be discovered), the scan was about 20 minutes, but it was fine.
Quite dishearteningly, this MRI scan came back again as inconclusive and I was yet again put on a urgent cancer referral. I saw a specialist doctor in UCLH, Bolsover street, who explained to me what my lump was likely to be. He was 90% sure it was something called a 'vascular malfunction', but they needed to do a biopsy to make sure.
Now we arrive at 2 years ago this month. I went in for a biopsy under local anesthetic, my parents pretty desperate for me to go through with it. Having been away from home at uni, I hadn't at all realised how all of this was affecting my parents, who had heard the word 'cancer' and pretty much completely freaked out. I was so preoccupied and oblivious, which in hindsight was great for me. I had a few months at university at least as a normal student. Alas, having had the experience I had before with local anesthetic, I couldn't do it - especially when the doctor said to me "you can have it under general if you'd like". I decided to have the biopsy under general anesthetic, which would take another few weeks. We were told to try and not worry and enjoy our Christmas. Somewhat easier said than done but what else could we do?
I had my biopsy around the 20th of January 2015, and had an appointment booked for the results around 2 weeks later, so I returned to uni until then (the image shows my shoulder after the biopsy). However, a few days afterwards I received a phone call. "We need you to come in this Thursday instead? is that possible?" I said no. I'm at uni and have already booked my journey back to London. A while later I get another call. "Hi Madeleine, we would really advice you to come in a bit earlier, on the 29th instead if possible". I accepted it this time, and probably for the first time felt genuine worry. One of the worst feelings. I headed back to London, and went back to UCLH with my dad, desperately hoping that it was going to be good news. My mum didn't come, pretty certain that they were just delivering me good news and putting us out of our misery.
How wrong we were.
My nurse came out into the waiting room to see me. "Hi Madeleine! I'm your nurse". My dad and I gave each other a look, wondering why she was introducing herself, why I had a nurse, and not saying out loud what by this point we both feared.
The final diagnosis went a bit like this.
Dr.: "Hi Maddie. Can you tell me about your lump please?"
Me: here we go again...
Dr.: "Okay, can I see it?"
Me: of course...
Dr.: "Well Madeleine, you have got sarcoma. It is a type of cancer, but we are going to cut it out and you're going to be okay. It'll be around mid February and you may need some radiotherapy afterwards, and will also have some scans of your chest and bones to check it hasn't spread. Do you have any questions?"
Me: um...
I mean, that's not verbatim but you get the gist. It was very casual, and extremely surreal.
My nurse led my dad and I out of the room, past the waiting room which now seemed a world away, and into a small private room where she gave me my 'cancer pack' full of pamphlets, and booklets about cancer, teenagers with cancer, questions you may have about sarcoma, living with cancer etc.etc. She started asking about my family life, about brothers and sisters. All this time all I could think about was my dad beside me, and my mum who was now on her way to work. I turned to my dad who I could tell was putting on a brave face and burst into tears. I don't remember much more from that room, but afterwards I was taken up some stairs to have some general health checks (i.e. weight, height, blood pressure, heart rate etc.) and to fill out some forms. This was when my dad attempted to perfectly time the call to my mum. He didn't want to catch her at a bad moment. But when is a good moment to tell someone your daughter has cancer?
When we finally left the hospital, we went to a coffee shop together and treated ourselves. I felt a bit like a walking zombie and I'm sure my dad felt similarly. Somehow, I met my friends later that day, leaving my dad on the tube trying to hold back the tears. I got off the tube to see my friend waiting for me, I went straight to give her a hug and burst into tears, again, telling her the news. We went for burgers and they were tasteless.The rest of the day was actually quite pleasant, considering, but I just felt numb all day. That's a feeling I can unfortunately say I am getting quite used to now.
I guess that's the end of my diagnosis story, and the start of another.
I hope that some other cancer patients, or someone who has gone through a similar experience will have some comfort from this blog post. There are people out there who completely understand what it's like and how stressful it can be. I also hope this helps explain a bit how diagnoses processes work and has shed a little light or taught you something. All I can really hope is that my experiences can help other people, as I know a little bit more information and understanding of the routines of hospitals etc. would have helped me a lot at the start of my diagnosis!
Until next time,
M x