Here is the start of my story – it is slightly more lengthy and detailed than I anticipated however it goes back a few months before I finally found out that I had been ‘gifted’ the shower of shit that is cancer!
Stage 2 Leiomyosarcoma – well between Stage 2 and Stage 3 Leiomyosarcoma. That’s what I got dealt.
Since around October 2017 I had suffered with repeat UTI’s (urinary tract infections for anyone not in the know!) Any girl who has ever had one will know how crappy they are, having to wee every 10 minutes and literally nothing comes out, burning, irritability, feeling like you’re losing your mind, and on top of that having to once again excuse yourself from work for another trip to the doctors. Sometimes I was prescribed with antibiotics, sometimes I was sent away after no infection trace came through on the dip stick tests. The doctor or nurse would feel my back to check I don’t know what but would send me on my merry way with nothing. I tried cranberry tablets, not using harsh soap to wash, drinking tons of water, herbal remedies. Nothing helped and it started to feel as though it was ruling my life.
At the beginning of 2018 I started suffering with really painful back and hip ache, constantly feeling down and unwell, I was bloated, had permanent heart burn and I was still going for a wee for what felt like a million times a day. I forced myself to get on with it, the doctors weren’t phased so it was obviously all in my head. No matter how many times I told the doctor or spoke to the nurses over the phone no one was doing anything about it. I knew something wasn’t right, I was putting weight on around my tummy, my clothes weren’t fitting. I must be pregnant I thought. I did loads of pregnancy tests – which was absurd anyway because I have the coil fitted. Nothing.
There were a few times when I felt like I was going to give up with the doctors. I felt stupid and embarrassed that I was pestering them but I carried on, I persevered and pestered some more. Most of us know how our bodies feel when we are well so we have a pretty good idea when something isn’t quite right. What I learnt from this was that non of us should ever let anyone else tell us how we feel or make us feel guilty and stupid for pushing to get help.
Just FYI I know not everyones experience with doctors surgeries are like mine and I’m not tarring them all with the same brush!
I decided to try the doctors one last time and got an appointment with a new doctor at my surgery – who I am now certain was an angel because she bloody saved me. I told her about the UTIs, the pain I was feeling and that I had started to notice a large lump on the right side of my belly. Me not having a clue where any of my insides are located except the obvious had been feeling this hard lump, it felt big and I just found it strange. She decided to refer me for an ultrasound scan at my local hospital. Little did I know what was coming next.
A week later I had the scan. It felt like it took forever. The lady who did it told me that my right kidney looked a little full and that she was sure the doctor would want to carry out more tests. In my foolishness I said ‘Ah ok, I had been feeling a bit of a funny lump there, it must just be that!’ – she didn’t respond. Derr how thick of me, I now know your kidneys don’t sit at the front of your body under your ribs!!!
No more than two hours later I was on the phone to the same angel doctor from the surgery. She was telling me that the scan had identified a lump, they were concerned about it and they were going to refer me on an urgent basis to Stepping Hill Hospital to have more tests. She told me these tests were to rule out cancer.
I felt panic, shock, how could she have just said this to me? How can this be happening to me? What is actually going on? I felt sick, I felt scared and I felt nothing all at the same time.
I felt pissed off that I hadn’t found my first boyfriend until I was 29, we had only been going out together for 17 months and we had only been living together less than six weeks. How bloody unfair.
I was told I would receive a call to attend an initial assessment with a consultant within two weeks. I got my call on the last day of that two weeks. It was awful waiting, knowing that I had something in my body that could be potentially killing me and noticing movements or feeling things in my body that I didn’t before – or was I imagining it because I knew what I knew. Every time my phone rang my stomach flipped. Finally the call came and I had an appointment, I was relieved!
The consultant I saw was lovely. She asked me a series of questions, had a feel of the lump and said that she would refer me for a CT scan which ended up being on the Sunday of the following week.
I was nervous about the scan but I had been told that CT’s were the kind ones, no tunnel just a giant plastic high tech polo (you know the mint?!) and a blue dye injected through a cannula that made you feel a bit warm, fuzzy, almost drunk and like you’d wet yourself!
I was nervous anyway because I was starting a journey of new things, of what if’s and a lot of wondering and waiting. I felt like it was all so utterly ridiculous anyway because it was surely just a cyst. You can’t even begin to get your head around it, around any of it and you start to feel as though you’re someone else. Like someone has taken over your body because it definitely doesn’t feel like yours anymore.
I didn’t really know what to expect next. Would I have a phone call from someone to go to an appointment to discuss the results? Would they send me an appointment in the post? I decided to just wait but people kept telling me to call and ask if the results were in yet. I was hesitant but I did it, I managed to get the direct dial of my consultants secretary – someone who would later know my voice so well that she didn’t even need to ask my name because I had rung so many times – I loved her for that and she was always so happy to take my calls.
I’m glad I got brave enough to call, a lot, it got me seen faster, it got me in for tests quicker. So don’t be afraid to call, don’t be someone who sits and waits. If you spend long enough trying and being as kind as you possibly can you will get through to the right person or get the number of someone in the know – trust me it’s worth it and it could be saving your life!
The secretary told me that my results were back but that my consultant was away that week. I was disappointed but thought hey ho, can’t be that serious, they wouldn’t wait to tell me something if it was serious. It was after this that I was heading out of work on my lunch break and I bumped in to a couple of ladies I work with – they practically forced me to call back straight away and ask to speak to someone else about my results – I’m so thankful they did that, talk about right place right time! I did as they said and was told there was a registrar I could possibly speak to, she was in surgery all day but she would try to get her to call me the next day.
I wondered if she was fobbing me off but low and behold the following day I got a call from the same medical secretary to tell me that the registrar didn’t want to speak to me over the phone and had asked if I could go in and see her that day. Right then I knew something was wrong, I pretended I wasn’t expecting the worst but I knew, deep down, I knew. I knew how my body felt, I remembered stuff I had read on the internet – naughty of me I know but I’m sure we’ve all done it! I knew I didn’t really believe people saying to me ‘oh they don’t even give good results over the phone’ or ‘it won’t be cancer you would have more symptoms’ or ‘don’t worry about it I’m sure you’ll be fine’. I think there is something in you that wants to believe all those positive things and of course wants it all to be ok but when you know, you just know. Well that’s how I remember it anyway.
Sitting in a room in Stepping Hill Surgical Assessment Unit with my boyfriend Ash, the registrar and a nurse – I knew that it wasn’t going to be great if someone had sent for back up! Looking back now I can’t remember exactly what was said but I was told that word no one ever wants, or expects to hear – CANCER. My first repose was ‘oh shit’ and I burst in to tears. I asked if there was anything else it could be, were they sure? At that point they weren’t completely sure as to what it was. It was suspected to be one of two rare types of cancer and there was a possibility but a very slim one that it wasn’t – I clung on to this for a long time – they don’t actually know.
Both the nurse and the registrar were amazing, they were kind and gentle and peaceful. Exactly what you need when you feel like your world has just collapsed around you. I felt numb to any feelings and words except practical questions like ‘can you take it out’, ‘how long has it been there’ and ‘will it affect how long I get to live’ when the registrar answered me with the words ‘there is a chance this could affect your time yes’ I wanted to be sick and I imagined my life disappearing right before my eyes for a split second. There was a lot of uncertainty in the answers I got as the registrar didn’t know herself but she answered as best she could. Remembering the pain I felt at that point still gives me goosebumps and makes me sad, thinking back to that conversation feels completely surreal.
I asked for a cup of a tea with loads of sugar. My mum has always said a tea with sugar does the trick for shock. I remember thinking it was one of the best cups of tea I had ever tasted.
We stayed in that room for a while, asked some more questions and I had some bloods taken, they were tumour marker and kidney function blood tests. The lump was pressing up so close to my kidney it was squashing the life out of it – finally an explanation for all the UTI’s I was getting.
They managed to get me in for a second CT scan that day – it was actually booked for the following week – I was more than lucky in getting the scan and the blood tests pulled forward a week – unbeknown to me at the time I didn’t have a lot of time to lose. The second CT was to see if the lump was causing any problems in my lungs or my upper body – I didn’t really click on to it but what they were actually looking for was to see if the cancer had spread.
After I left the hospital that day I kicked myself for the questions I didn’t ask. Advice given to me at the time was to write questions down as I thought of them in between appointments and to take someone else along to appointments as an extra set of ears. I did both of these things, they helped, massively and I highly recommend both.
I pulled myself together for the phone calls to my family, I am one of six girls so it wasn’t a quick job. My parents along with three of my sisters and their families were camping down in Lyme Regis – great timing hey, just when you want your Mum and Dad they’re five hours drive away. I hated ringing my family, hearing them cry and me telling them it would be ok, telling them to ring each other to console the other. It was at that point, although I didn’t realise at the time, but it was then that I took the first step in handling it like no one knew I had the power in me to do. I have always been dramatic, a right drama drawers, a total hypochondriac my sisters always said. I surprised myself and everyone else with how I turned out to be in a time of complete and utter crisis.
‘You don’t know how strong you are until being strong is the only option you have.’ – Bob Marley
My heart felt broken for my Ash, how could I have ended up being such a shit girlfriend who gets cancer. No one wants to be stuck with someone ill. I told him he didn’t have to stay with me, I understood. He needs someone better I thought, someone well. All this in the same afternoon I had pretty much been told that I had cancer. Nothing like kicking yourself when you’re down hey!?