Now I’ve been meaning to do this for such a long time I really have and I’m so sorry that it hasn’t happened beforehand. Finally I’ll give you some kind of explanation about just what has been going on in the last 7 weeks since we headed out to Ireland for my big wish, to ride internationally abroad for my country in top hat and tails. We managed it - it was a huge struggle but totally and utterly worth it.
You can watch my test here:
Thinking back its an awfully long long time ago now to the Thursday in Tattersall where really we just went from an extreme high to the lowest of lows in 24 hours. From the very moment we woke up we were extremely dubious and did not think for one second that i would be riding that two star test. I was in absolute agony I really was. I cannot explain it. I couldn’t even lift my body up of the bed or roll over… I’d barely made it on board the Mavis, let alone up that centre line in the first place. Yet somehow, as soon as I was let go of by the most phenomenal instructor in the world, Brigid Grant, who had so kindly been leading me round everywhere as I didn’t even have the strength to steer and left to ride between those white boards, everything changed- the determination, focus and adrenaline made that pain disappear (it wasn’t gone for good but it was relieved so much - I could smile again). I could do it. There was no need for poor Tom Grant (my out of this world groom) to be stood on the side lines in his top hat and tails anymore (not that I wasn’t grateful in the slightest). I’m sure we all knew I would do it no matter what but I just put my hand on my heart and say that I have never ever ever pushed my body so hard in all my life. However once I’d halted and saluted and the unbelievable crowds had gone crazy and given me such wonderful cheers the pain had returned. It was just excruciating as I was led back to the stables. When I’d eventually plucked up the courage to take on the pain of dismounting I couldn’t even stand. My legs just gave way. I knew something wasn’t right.
Straight back to the lorry and somehow Poor mum just about managed to get me led down in the back. I don’t know quite how. It was just a blur around me - everyone is packing things away, saying goodbye, loading the lorry. Before I knew It we were on our way home heading back to the ferry for midday. By 2am we were at the hospital. Poor Mavis stood patiently on the lorry totally oblivious to it all. She’s an absolute star. By this time my stomach had gone from being normal in colour, although extremely painful, to bright red and angry and raw in colour. Slowly black spots were forming on the base of my stomach. A consultant came in and was actually able to push a normal cotton swab straight through the skin in my stomach where these marks were like it was something you can normally do each and every day. Well the infection inside of me most definitely wasn’t and I think they knew this too. These are just a few of the things I can remember from that Friday. My infection count was just so high (594 and the normal persons is 5-10) that I kept on drifting in and out of it awareness all the time.
Eventually a drain was fitted into my stomach once I’d had a CT scan which revealed that I had a huge gaping 3cm hole in the wall of my bowel thanks to all the radiotherapy and chemotherapy my body had received. Now to decide just quite how to deal with all the rubbish that was sloshing around in my stomach as a result of this and causing this awful extremely serious flesh eating infection inside of me that there was no way of currently beating.
My options weren’t great to say the least. But it was decided to take me to theatre to remove as much infection as they possibly could however it was deemed that there was just too much even after three huge holes had been made in the front of my tummy. Hmm not great!
I returned to the ward and everything seems very dire. I hadn’t a clue what to say, well at this point I hardly knew what was going on but it was clear by the look on everyone else’s faces that they knew for sure… It wasn’t good. The outcome is bleak, the consultants talk with stern straight faces, mum is in tears and dad is squeezing my hand just like he did the day I had been diagnosed just over a year ago. It all seemed so unreal yet so real. Like we were reliving it all once again but this time the clock is only ticking faster. My time given is short and my brother is even rushed into hospital as they anticipate the worst.
Next thing they know I’m sat up talking again. Much to everyone’s shock I’m there, I’m smiling, I’m demanding some food. So Hannah can’t be feeling too bad. To be quite honest I really can’t remember Friday at all and this was deemed clear when we returned a week later for another CT scan to check the stomach drain and I had absolutely no idea who any of the people were wearing my wristbands that i had merrily given away that very Friday as I told mine and Willberrys story as well as our adventures in Tattersalls. How mad is that?
Anyway back to where we were at. I now had three huge gaping holes in my stomach, which was as much infection as they could possibly remove, a stomach drain, catheter… Ooh and a huge great big epidural which meant my legs didn’t work anymore - great - but at least it was blocking the pain that I should have been experiencing which would have been even more excruciating.
I was a little more aware by Saturday and hugely grateful to see Tom Grants wonderful face as one of my first visitors that Saturday, plus… The wonderful Doris! She was very warmly welcomed by the entire ward that weekend and had huge fun in the play room, roaming the ward and playing in the garden. It was so lovely to have her there. She even stayed the night in the lorry! She had to go home Sunday which was a shame but it was still so amazing that she even got to come and play and I’m very grateful to the entire team at Bath Children’s Ward for making it happen and putting a huge smile on my face even on the darkest of days.
Amazingly I was home by Tuesday. It was such hard work though shifting from A to B especially with huge gaping holes that were constantly leaking and making everything extremely difficult as all I did was worry about it all coming out or not being able to deal with the problem we may face. Obviously by the time we made it home from hospital we were desperately in need of a nurse to mop me all up and sort me out but once your home… You’re on your own aren’t you. Fortunately everyone at the hospital were incredible and had been trying to get organised so that the district nurse team, who would enable me to stay at home no matter what happened, just ensuring I’m as comfortable as possible, were ready and waiting. I also have the most amazing Auntie who is a fabulous nurse and who lives just 5 minutes away who we can always count on no matter what too so we are thoroughly spoilt and so grateful to have her by our sides too. The support we have is phenomenal.
I had a huge number of very kind visitors over the next few days, some of which I remember more clearly than others - mainly due to the extremely high dosage of pain killers I am on to numb the pain. The district nurse team worked overtime to ensure that I was always comfortable and are absolutely amazing. We cannot thank them enough as they knew just how very important being at home was to me.
Eventually the drain was removed from my stomach, so that was one less pipe sticking out of me, as it was no longer needed due to an amazing fluid reduction, the consultants just couldn’t believe it, this totally awful infection seemed to be disappearing right before them. I didn’t have a clue what to say so I’ve no idea how they felt at this point. I was defying all the odds. Who’d have thought it.
Unfortunately just as things looked to be on the up I spiked another temperature and high fever and the pain I was having to deal with was unimaginable. I was put under sedation for about a week, totally gutted to be missing Nunney International and Fathers Day and the first two days seemed to only go from bad to worse. All I could do was either sleep or scream for help as the pain was so excruciating. I’ve no idea just how helpless mum and dad must have felt. It must have just been awful. Watching your absolute love of your life (well I should hope so to) in absolute agony and being able to do nothing about it.
I get frustrated every single day that I’m not going to be the one looking after them. I mean that’s the way it should be. Eventually the roles change and they no longer look after you, instead you look after them and that’s the way it should be. This isn’t right. I shouldn’t leave before them. It’s the wrong way round. This evil thing called cancer has got it wrong yet again. Not only for this reason but they messed with the wrong person too. I’m #kickingcancersbutt with my Willberry Wonder Pony and with you all by my side nothing can stop us in our mission.
Now deep under sedation the consultants don’t think they can do anymore for me. As if only to make matters worse the way in which my bowel has burst meant that the leaking contents from my bowel that were surrounding my stomach found a new way of leaving my body. Instead of leaving the way it should… it found happiness in leaving via the front of my stomach through the new holes that had been made during surgery… Not through the hole it was meant to… This came as a quite a shock to us all when one day all you find is this awful fluid running down your belly wall really where it shouldn’t have been. Due to all of this and the way in which it was so dirty, my infection count went pretty high again and I kept drifting in and out of awareness. Mum and dad are fearing the worst, as are the doctors, as nothing seems to be getting on top of what is making me so poorly again. We all know it must be something to do with my stomach considering I still have a huge amount of rubbish sloshing around all my organs inside of me due to the 3cm hole that is gaping in my bowel and the way in which it is now leaving my body. However, as if by “Hannah magic” - as they so proudly put it - I seemed to pull through to the other side again, almost as if my little rest when I was under sedation due to the sheer amount of drugs they had to give me, did me and my body the world of good and gave me the boost I needed to fight back yet again and not let this beat me just yet.
Gradually I began to be able to get my words out as I had been unable to get people to understand me before due to how dry and slurred the drugs were making my speech. It was a relief to be “back in the world” but to be honest throughout it all I had had absolutely no idea! I had no clue I had missed nunney or even Father’s Day, which I really was so gutted about, although at least I’d made it this far which was the main thing. I hadn’t been aware of the grotty mess that had occurred the day poo came from my stomach either which I’m rather pleased about. My goal had been to get there (fathers day), who said I had to be aware or be able to wish dad a happy day in the first place?! Even so, I was still here, still dreaming, still fighting and most definitely not giving up just yet.
So each day I became stronger again and we knew that I must have been feeling better as I stated “I’m really bored” not too long after I was able to sit up and start eating. However this proved a problem as my wounds were going to be unable to heal as the fluid leaving them would always mean they were constantly unclean. However we had to remember that healing was questionable anyway after the sheer amount of radiotherapy I had undergone beforehand anyway which had seriously damaged the skin in this area. Polly, my wonderful consultant, came to visit us not long after I had become more awake and aware since the sedation as really we had to do something about what was going on. It appeared that our best option would be to have a stoma bag put in via an ilyoscopy which basically meant shutting off the rest of my stomach system that was after the hole in the bowel wall. This would mean all my faeces would go straight into a bag attached to my stomach which we could empty throughout the day. This way my stomach wounds might have some chance of healing.
The very next day I was back in hospital for a CT scan to see if this kind of operation was doable and thankfully it was. This was after I had to drink what seemed like gallons and gallons of water that had contrast in (don’t ask me why!) but it told them what they needed to know and now all we needed to know was when it could all happen.
Now when I say Polly is an absolutely wonderful consultant, what I quite literally mean is that she is pretty much THE Wonder Woman and makes almost anything happen even when you think they won’t be able to. Now who’d have thought I’d have ever made it to Austria skiing down black slopes or riding just 5 weeks ago in Ireland with a huge burst in my bowel in top hat and tails with a Great British flag on my numnah? Nobody. I was quite often laughed at or people would roll their eyes for many of the things on my crazy bucket list. Even so, that very same day that I’d had my CT scan and been given the all clear that an operation would be possible, as the skin was now ready and my bowel had settled just enough, it would be done when there was time to. Oh no not me - I would be having mine straight away. Typical Polly but that’s why we love her.
I’m pleased if was that way though as it gave me far less time to think about what was going on and also I wouldn’t have to face the gruelling painful journey back and forwards from the RUH in order to have the operation in the first place. Before I knew it dad and i were back in the anaesthetic room and being prepped for theatre. I was quite nervous this time. I know that there are always risks and complications with anaesthetic but the last time I’d been in this situation it was our only option to clear as much infection in my stomach wall as possible as I really was at such high risk. Plus I was a little bit doolally to say the least too and really had very little idea what was going on! But it had to be done. It was my best chance to get back to some kind of normality. I knew and know that sitting on a horse is highly, no beyond highly, extremely unlikely now. I mean extremely unlikely, as in a miracle would need to occur for it to happen, however we all know that there is certainly no harm in dreaming big or fighting hard for what you truly believe in and that is what I was definitely set on doing as the anaesthetists briefed us on the good the bad and the unknown of the procedure I was about to face.
Before I knew it I sleepily came to in a curtained cubicle with an oxygen mask on my face. Mum and dad peered round to me from my right. Dad put his thumb up to me just as he would in any situation and mum smiled with a huge look of relief on her face. I must have been in there a while as I had last seen a clock reading 4pm and it was now 8pm. I had the most miserable of all the patients I’ve ever met based next door to me who could not stop moaning I don’t think, even if you were to pay him to. All I could think was if you want pain, I could give you some real pain if he really wanted it! It just makes me laugh when people moan now, especially about the little things as when something as big and as frightening as what’s happened to me occurs in your life you do tend to stop worrying about things like that. They really do not matter any more. They’re petty. However as i said, until it happens to you you just don’t know what it’s like but most of all I really do wish that this never ever EVER happens to anyone ever again. It will. That’s the horrible awful scary thing and we can’t stop it until we raise enough money to well and truly achieve our mission in #kickingcancersbutt. I know we can do it and I know one day we will beat it. Along with #willberryswishes hopefully we can bring a little joy during the worst times but most of all we need to stick today her and stay focused strong and determined. That’s what matters.
So soon we are heading back to the children’s ward where I’m greeted by the usual swarm of unbelievably happy nurse faces. I really do love that team. Of course me being me was soon feeling rather peckish. I hadn’t eaten anything all day waiting for this operation had I!? So why not have a KFC aye?! And so we did. About half an hour after I’d returned to the ward. “Typical Hannah and her food” somebody said as I beast my way through a gorgeous boneless banquet - the best. It was extremely yummy and I was very grateful for it, I’m not sure quite how pleased my new stoma bag “Steve”was though. Have I mentioned that I’ve named the holes in my stomach too? There’s Jimmy, Fred and Jim-Bob (as Jim and Bob became one not long after the first operation sadly). It definitely makes it easier to keep on top of who’s who.
Soon though Steve started to become more and more use though as less faeces was leaving my body through the front holes of my stomach. The plan would be for this to continue to decrease in amount over the next couple of weeks and gradually become next to nothing so that the holes could heal even further if possible. That’s the plan anyway! We left hospital just 5 days after the operation which was amazing and only possible due to the fantastic district nursing team that is in place now at home to make sure i can be there as much as possible as they know just how very important this is to me at this awful time.
Home at last it was an absolute delight. Of course the first thing to do is see Mavis and Doris who’ve got a little wild to say the least without my existence at home! Not that I could do much but I like to think I could.
So of the most part I think I’ve covered all that’s been going on in the last 6 weeks - quite a lot I think you’ll agree and very much a roller coaster ride may I add too! My epidural lasted a phenomenal 5 weeks and at home too which in itself is another little record so I think I did pretty well don’t you? To start with I really struggled with the agnonising pain that came with losing the pain relief from my mid-back downwards however we now seem to have found a bearable level of pain relief which fingers crossed seems to be working for now along side “sid” who is my syringe driver.
We had anticipated that both legs would come back to the use that they had had originally however my right leg is no longer working at all. They’re fearing this is now due to the spreading of the tumour right into my right hip and muscles as well as the sheer size of it forcing so much pressure on the nerve in my spine which asks the leg to move in the first place. I now have the choice of accepting that this is probably the case or I can face the struggle of travelling to bath for an MRI scan (which I haven’t had in an extremely long time) to know for sure. Decisions decisions decisions. Always the way! Never a day without one it seems. If only I knew the right way to go. For now though I know I must stay strong, stay focused, stay determined because sitting in this room in this same bed day in day out is never ever going to be easy in the slightest. With Willberry by my side though I’m sure I’ll be able to sit right and strong. We can’t let this beat us just yet.