Firstly, I forgot to mention a really big part of my diagnosis in my previous blog post. Doh! Be prepared for this to happen again, because back-dating is so hard I should have definitely started these months ago! This blog post is essentially now just of a mish-mash of surgeries I had in the couple of weeks between diagnosis and treatment, but that’s how life went.
Monday 21st September
Anyway, I forgot to mention in my previous post, that I had a lymph node removed and a biopsy of bone marrow taken from my spine. This further helps them determine which cancer it could be. The lymph node was under my left arm, and I had no idea it was enlarged until it showed up to be 4x its normal size on a CT Scan, (which I had vomited and ever-so gracefully passed out just before – all at the mere sight of a cannula
going into my arm. Note to self: to never look at the needle again). I was really lucky in terms of the procedure, as the lymph was detected on a Friday and by the following Monday they had fully removed it. There’s always a risk that they can’t remove it/can only remove it partially due to blood vessels being in the way. It was all done under a General Anaesthetic (I was asleep and totally unaware, but I will talk about my bizarre love of GA’s at another point) which apparently is unusual for an adult patient when they are having bone marrow taken, this is usually done using gas and air… so NO THANK YOU. Something I have learnt about being a patient in a hospital, is that you have the power to be completely honest with doctors and nurses, because it is all essentially free-choice, and as an ‘adult’ you can actually refuse medications, procedures etc. In my opinion I am quite brave and willing to have anything done as I’m trustworthy of professionals and I have therefore rarely refused anything, if it’s going to make me better why would I say no? But there have been times I have had adjustments made because I simply know how to avoid traumatising myself. Quick recovery, ate my fish fingers (hospital food – now gross) and went home! Amazing, cancer is so easy I’m sailing through…
This had already become such a journey for my family and I, that we were doing one thing and then found ourselves sat asking ‘what next?’ as if we were totally unbothered by what was happening. At this point, we had only been on this path for a couple of weeks, and lots of information was still yet to sink in for us, me in particularly.
Tuesday 5th September
My next minor surgery. As I was going to become a long-term inpatient, they like you to have all of your medications and fluids, especially chemotherapy given through a PICC line. I still don’t know what that stands for, but it’s basically a tube which is inserted into your arm, through a vein, and fed into your chest (cringe for squeamish people like me). This means that when treatment is given it goes intravenously (IV) straight into the veins and all the way around the body, without having to constantly reinsert a cannula (AMAZING.)
This was done under a local anaesthetic, so I was awake but the area was numbed, and hidden to avoid any more risk of me passing out or being sick (this is quite easily achieved). It was crazy to be able to watch what they were doing inside my body via an x-ray machine, which they used to locate where the PICC line was sitting. Very easily gone wrong if they insert the line into either my heart, or my lungs it could be fatal, so I was definitely watching through the gaps in my fingers.
Friday 8th September
Eight days ago, my consultant looked my family and I in the eye, and delivered the devastating news that I had stage 4 cancer. I did not bat an eyelid, I didn’t blink a tear, I simply said ‘Ok, what does that mean for me?’ a question of course he could not answer so early on. I have an incredibly ‘surely not’ attitude in life, so I find it unbelievably difficult to digest a lot of negativity, because I like to continue to believe that nothing is ever ‘that’ bad it just seems a lot worse. Well that is because I was so clueless about life with cancer. I was still feeling so positive, because besides back ache, I felt so well. I didn’t feel like I was poorly enough to have cancer, so I guess I was in denial for some time and just felt grateful to be feeling well.
So far taking everything in my stride, there was one morning which really managed to make my stomach flip and my heart break. All I have ever wanted in life is my own family, especially babies, lots of them! I am THE broodiest person and just absolutely adore kids. Hence why I am halfway through training to be a primary school teacher, because I just feel so passionately about children having the best start in life and they bring so much innocent happiness into such a dark world. I literally played with my dollies until I was about eleven years old, dreaming of my future of becoming a mum for real. I have always felt like I was put on this earth to become a mum.
However, it turns out that someone had different plans for me. My chemotherapy is going to be so aggressive in order to treat my cancer, that it has a 90% chance of causing infertility. When the consultant explained this, it felt like she didn’t even believe the 10% possibility, she seemed certain that I will never have children of my own. I looked over to my mum for reassurance, that my consultant doesn’t know me well enough to make those decisions about my future. My mum felt the pain as hard as I, because she knew how important this was for me. We both broke down in tears and I suddenly realised, that not only am I now being told to fight for my life, but actually now my future has been taken from me anyway. My world was falling apart at every hurdle, is this really what cancer is? A total life ruiner?
After a night of random sobs and plenty of mum advice, I was finally delivered better news. Freezing my eggs wasn’t an option, as the process takes up to six weeks and we didn’t have a spare six weeks before chemotherapy started. More cries !! BUT, there is a ‘new’ option to preserve fertility, which in the UK is only offered at John Radcliffe Hospital in Oxford.
They offer a procedure where they completely remove one ovary, then they store (God knows where) and freeze it for up to about 50 years. They test it and ensure that it isn’t cancerous, if it is they won’t keep it as there’s no way they could give it back to you. If in the future I want to have children, and struggle to conceive naturally, I can now have strips of my ovary reinserted, to produce eggs! They basically slice the ovary into around 80 strips, and give them to you as and when you might need them. The success rate from babies being born healthily from this procedure is quite successful so far, so hopefully there is hope. So on the 7th, off I went in an ambulance from Leicester to Oxford (slightly dramatic) with my huge bag of medications and snuggly pyjamas. The journey was awful but when I finally arrived I was wheeled into my own side room (phew)… and I was forgotten about for nearly four hours, fabulous. The care was awful but luckily my mum and dad arrived shortly after and kept me company.
Very early the next morning I was taken for my procedure. We had a brief chat with Dr Lane, an amazing consultant who explained what was going to happen, and talked us through the process. Then I was wheeled through theatre for my GA (fave moment). I LOVE that feeling where you are being put to sleep, it’s so relaxing. I’m just going to fill this space with waffle, because I don’t actually know what happened during the procedure, but the surgeon said it went really well and my ovary looked healthy!! I was wheeled back to my side room (slightly feeling like a Queen from the amount of bed wheeling and lack of walking) and the pain was about 11/10.
You really don’t realise how much you use your stomach muscles until you’re trying to turn over in bed or someone makes you laugh. All I wanted to do was get back to the cosy safety of my room on Ward 27 in Leicester, but Oxford hadn’t arranged an ambulance to take me back. There was no way I was staying there another night, so we dosed me up on medication and padded out my dad’s car with a zillion pillows, and he drove us all back. On a Friday. In rush hour. It was Hell. But at least now I have had MRI scans, X-rays, Bone scans and a Heart Scan, all my surgeries are out the way and I am ready for my treatment to start!
daisy x x