Abscess All Areas

 

Apart from this introduction, I actually wrote this blog entry quite a while ago, but could not get it up when I wanted to, when I was still in hospital. I’m so much stronger now and am finally getting back to doing things that seem normal, which is just the best feeling. It has, however, been a long, exhausting road back to recovery. As such, this blog contains a hell of a lot of stuff; basically what’s been going down and why I’ve been so quiet recently, and – just so you are warned – it is bloody long.

 

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My mum spent a morning recently counting all my meds so we knew which we needed more of. It became apparent that she or I could become a drug baron very easily.

But the only reason for that is that a lot has happened and I think it is important to say all I have in this post, rather than just edit out the less exciting parts. I’m not saying this post is boring (at least I hope it isn’t!) but if you start thinking along the lines of jeez when will this ever end, I’ll let you in on a little secret: so am I. Throughout this journey I have spent seven months misdiagnosed; had an epidural; one incorrect surgery which spread my tumour up my spinal cord, increased my chances of malignancies and a recurrence, and led to an abundance of health issues; one trip to proton; one regrowth of my tumour to double its original size; a weekend of waiting in America with my mum, and my dad stuck alone at home, to hear whether I had a twenty five percent chance of survival; one corrective, life saving but also quite frankly life altering surgery leaving me with various nerve issues and faecal incontinence, which, going by the latest opinions of my surgeons, look set to not improve; another surgery leading me to require IVF if I ever want children; a trip back to Jacksonville, Florida for twenty five radiotherapy and nine proton sessions (the radiotherapy sessions were needed because of the metalwork inserted during the hemi sacrectomy, and caused more damage to neighbouring organs and increased my chances of a secondary, radiation induced, cancer more than only proton sessions would have); an egg harvest that meant I needed daily hormone injections for three weeks and a procedure to remove the eggs under heavy sedation; five rounds of chemotherapy (four out of five I was admitted for, three were due to extreme reactions to the drugs); a diagnosis of depression and post traumatic stress disorder; neutropenic sepsis; a bowel obstruction due to a posterially herniated small bowel; a blood infection through my PICC line, which meant it needed to be removed and later replaced; bowel bypass surgery to correct the hernia; a severe infection, in the form of a deep pelvic abscess, in my back caused by small bowel content leaking into my back, which meant two drain insertions and further surgery. I have spent about three weeks out of hospital in the past three months, I have had, in excess of one hundred blood tests and cannula insertions/insertion attempts, I am down to forty five kilos and was so underweight they had to feed me through a tube inserted up my nose and into my stomach (of which I’ve had six inserted then taken out). I have also had countless MRIs, CTs and X-Ray’s, the latter two of which also markedly increase my chance of a secondary radiation induced cancer. I have had kidney function tests and echo cardiograms in preparation for the chemo, and then again after my fourth and fifth rounds to check the chemo hadn’t damaged my heart and kidneys. I will continue to have these and the scans for ten years. This list may bore you because it is long and drawn out but hospital stays are long and drawn out, and the sad fact is your either really not well or bored out of your head because you’ve started to feel well. I probably/definitely sound pissed off and it is true to an extent. I am relieved I am writing this in my own bed but I’m tired of shit going wrong.

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My arms were full of bruises and little puncture wounds from all the cannulas that I had put in, or that they tried to put in. My veins walls have been so battered that they collapse and I bruise regularly now. Collapsing veins mean you need a new cannula, and so the cycle continues.

Anyway I’m just making this post longer by rambling on and I’m about to drown in self pity, so I’ll get on. The last thing I will say is that I am not sensationalizing anything in this post. Although it may seem that I am, in truth this hospital stay was dramatic and scary. Looking back I was ill, really really ill, dangerously so. The main thing is that now, hopefully I am better and things are looking up. I hope this post fills you in on what the past couple of months have been like for us…

 



In a turn of events that none of us could have predicted, I have landed myself back in the one place I hoped I would never to be admitted again: Stanmore.

Once I was sitting in my room though, I was surprisingly calmer than I thought I would be. We had known for a week that a transfer was imminent for surgery to take place here, but after the transfer was promised to take place on Monday 12th September, then Thursday 15th, then finally Friday 16th, it was something we didn’t totally believe would happen until we were safely in the ambulance with all our bags. I hadn’t wanted to be transferred to Stanmore from UCLH, but then again lots of things have happened that I would never have wanted, some for the worst and others for the best. Whichever one this stay proves to be, I am here now and so there is not much use in feeling sorry for myself for too many more days now… Maybe just a few more.

The reason I am at Stanmore is for surgery because I have a rather nasty infection in my back. The surgery took place on Tuesday 20th September, and involved a clean out of the infection and wound, and resection of any infected tissue. It went well, but before I get to the operation itself, I will take you through the events in the weeks that led up to the big day.

I don’t think I completely realised the gravity of the infection and the general situation, until Saturday 11th September. I was gradually deteriorating for the whole of the previous week, going from feeling fine most of the time, to some of the time, to none of the time. On Wednesday 31st August I managed to walk from St Pancras station to UCLH for my final chemo appointment. The appointment was supposed to be all about getting scan results (clear of sarcoma may I add!!), setting out a clear plan for the many scans I would be having in the future and, for me, a little extra. I felt like I had been given no closure on my treatment. There was no final chemo day, no pivotal moment when I had finally completed it all. I was not looking forward to the sixth final round of chemo that I was supposed to have but missed due to the bowel obstruction, but at the same time I felt as though I had lost out on that defining, perfect moment between active treatment and no treatment.

So every part of me wanted to get through that appointment, finally fist pump the air and sink my teeth into a celebratory fish burger and sweet potato fries in this amazing burger bar near UCLH. But even though every part of me wanted that to happen, there was next to none of me that realistically believed I would be going home happy from that appointment. I knew there had been something brewing and as the temperatures, hip pain and back swelling didn’t improve I had come to the realisation that the week stay in St Helier wasn’t just for a virus as we had thought. I had suggested packing an overnight bag to my parents and had practically suffocated Scout giving her cuddles the night before we went for the appointment because deep down I had already accepted that I wouldn’t be coming home for a while.

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A beautiful picture of beautiful me, smiling beautifully despite being extremely pissed off.

They admitted me to UCLH that very Wednesday and did an ultrasound, during which they discovered fluid indicating an infection. My surgeon, Mr Lordan, came and found me during the scan and explained the situation. It wasn’t great, I cried and he did his best to console me with his certainty that we would get through this like we had got through everything else. Two days later, on Friday 2nd September, a drain was put in my back to hopefully, well, drain some of the infected gloop out of my back. They took a sample during the insertion, actually smelling the liquid to confirm that it was infected and not just a serous fluid. Yes that is disgusting, but what dedication to the job. The formal assessment was that it absolutely stunk and was definitely infected.

The drain blocked almost immediately, failing miserably, but the following Thursday, on the 8th September, they replaced it with a larger one, a couple hundred millilitres squirting out of my back in the process. This drain lasted a couple days, not draining anything by itself but producing some infected gunk whenever it was flushed and aspirated. This drain bothered me far more than the original one did, which I’m pretty sure had less to do with the fact it was slightly larger and more to do with my ever expanding and reddening back bulge.

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A highly medical, technical and illustrative reconstructive diagram of my massively swollen back (this isn’t me in hospital by the way, it’s me looking glam with my gals at this event called Catface. It’s pretty self explanatory: you draw a nose and whiskers on and get in for two quid rather than ten. It was great because the venue is normally a strip club so they had props, such as this car with loads of water hidden under it. Naturally we had a water fight. My fringe did not look so sleek by the end of the water fight though unfortunately.) Also the red bit is my back in case that’s not clear.

During this time I became more and more sick, reaching an awful climax on Saturday. My back had swollen up so much that it dwarfed my bum (although that’s not saying too much since it seems to have sadly deflated throughout my weight loss.. the peachy bum that once was, no longer is); it was bright red, burning, incredibly painful and felt hot to touch; my temperature had gone from fluctuating but being normal the majority of the time, to hovering constantly above forty degrees; I couldn’t eat anything as even the idea of food made me nauseous; my blood pressure kept dropping, meaning they had to give me large amounts of intravenous fluids, which in turn made my legs swell and caused me to put on just under ten kilograms in ten days despite eating next to nothing; I was so weak that I wasn’t able to walk and had to be catheterised.

The infection took its toll on my blood too, and I became anaemic. During this stay at UCLH I required three units of blood, given via two blood transfusions. I can’t even count how many pints of blood I have received throughout my treatment. All I know is that it has saved my life, and saved the lives of countless others I have met since my diagnosis. I’m going to make a small plea here to encourage as many of you as possible to donate blood. It takes only a few minutes of your time and it could save me, my friends, or the millions of others who have needed blood transfusions to stay alive. I know needles aren’t nice but we are talking about the difference between life and death for someone else here.

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What my call list probably looked like by Saturday afternoon.

Throughout my stay I kept asking quite how ill I was because it is surprisingly difficult to gauge whether you just feel like shit, or, in fact, you are pretty much in deep shit. The doctors gave vague answers like, “well… you’re not too well,” but the fact they wouldn’t even let me leave the Macmillan Centre on that initial Wednesday until a bed became available in UCLH spoke volumes to me, as did the intensive care nurse who visited the evening of Friday 19th September to let us know that I was on their radar and they would be keeping a close eye on me. I actually met with my amazingly lovely abdominal sarcoma surgeon, Mr Lordan, yesterday and my mum asked him how bad things had really got. He said he had been very worried indeed and that he had never before got an honorary contract written up so he could operate on a patient at a different hospital

On Saturday 20th September we called Mr Lordan, in a panic. Mr Lordan is so nice, and was also so concerned, that he gave us his mobile number to call at any time if we were worried, something I am rather sure he regretted doing by that Saturday when we had called him near enough each day to voice our concerns. I was in tears down the phone to him, telling him that I was scared I was going to die; that I couldn’t wait the weekend for something to be done and wanted emergency surgery; that I could feel the bulge in my back moving; that I was in so much pain; that I couldn’t do anything myself due to the constant physical and mental exhaustion that I was drowning in. He reassured me, reminding me that if this continued to a point where they needed to do emergency surgery he would be there, but if they could at all avoid it, even if this meant me feeling absolutely horrendous for a few more days, then they would, because an elective, planned surgery is always far preferable to emergency surgery both in the short and long term.

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My mum took this picture of the cakes that Eric, the manager of Paul’s House, made. He makes cakes for the people staying there every Friday because he is so lovely. These cakes were enjoyed immensely by my mum; when you’re alone there, a cake and some tea can be the biggest comfort. I also ate some because I love cake.

Instead, I saw the on call surgeon, who remarked on the size and redness of the bulge. He upped my pain meds and started me on a new one, which very pleasantly goes up your bum. I’m not complaining though because it bloody well worked. Whilst he helped me physically, a throwaway comment he made had a massive impact on our stress levels until we were able to talk to Mr Lordan. He told us that himself and his Clinical Nurse Specialist, Sophie (who is absolutely fabulous and has organised so many important things for us and made a real difference to our lives over the past few weeks… In fact, both herself and Mr Lordan have massively made a difference), had only recently been discussing how they spend so much of their time undoing the damage these throwaway comments make. The on call surgeon told us that they really needed to get this operation right because it was a “one shot kind of situation”. Feeling the weakest I have ever been, these were not reassuring words to hear. Although I tried to put them to the back of my head, I couldn’t drown them out. They managed to worm themselves into the silences, the moments when I was on my own, whenever I looked in the mirror. It was with a gradual sinking feeling, it dawned on me that perhaps it could be so that this infection was going to get me after all. It sounds dramatic but this wasn’t a ridiculous thought; many children with cancer pass away due to the effects of chemo, such as infections, rather than the actual cancer itself. My mum’s head was filled with the same thoughts; she left for Paul’s House, the close by Clic Sargent accommodation, at the end of the day and told me later that she cried there on her own, his words echoing around her head.

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Me wearing my beautiful pyjamas back at Christmas. Luckily I wasn’t wearing the hat when my back exploded so there’s that at least.

Things reached boiling point Sunday morning, when bizarrely I woke up, walked straight to the toilet without a second thought and went back to bed. It hit me when I lay down how weird it was that I could suddenly walk. My nurse came in to flush and aspirate the drain, which had become completely blocked the day before. As I turned further onto my side so she could have better access, my back exploded. This is no exaggeration. I felt a pop and a hole a couple centimetres long and a few centimetres deep appeared along the scar I had got from my hemi-sacrectomy. This foul smelling brown liquid literally gushed out of my back, into the bed, all over the floor, my favourite pair of pyjama bottoms (yes I know I have great luck) and my t-shirt. It was carnage. I was covered from my ribs to my feet in this liquid, as my nurse, who handled the situation brilliantly, grabbed incontinence sheets and stuffed them along the bed and around my, as I like to call it, back hole. My doctors and surgeon reckon that there was at least a litre of the stuff when it first exploded, but even now it continues to spill out the hole from the drain and the larger back hole.

My nurse cleaned my back then my mum and I went to the bathroom to wash up. I was so weak that I couldn’t even clean myself; I just stood there as my mum washed me. We called it quits as my back hole continued to splutter out more gunk, which kept dripping down my legs. The on call surgeon was contacted and he took my drain out – it was pretty much obsolete at this point. The nurse fit a stoma bag over the hole from the drain and the much larger new homemade back hole, so that the wound could leak and be collected in the bag. This solved the leg dripping issue and stopped me from constantly smelling like crap, which is always a good thing.

On the pain front, the relief was pretty much immediate; I went from taking oxycodone every two hours on the dot to only twice in twenty four hours. I still felt ill though, struggling to eat and losing more weight. There was also the really unnerving sensation of my back hole spitting out gunk, which seemed to happen whenever I would try to go for a number two. I would majorly freak out that the hole had got larger, until I obsessively checked in the mirror that it hadn’t and got everyone within a two mile radius to confirm the same thing. The reality of the spluttering was far less horrid: it was only spitting out blood and gas.

We asked my surgeon what was actually coming out of my back, and he said that it was a lovely mixture of pus, poo and blood. I guess that really does make my back scar the worlds longest buttcrack, complete with a fully functioning back and a bum hole. I truly am unique in the worst possible way.

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Before my back exploded I had another PICC line inserted. My veins had gotten so bad that getting a cannula in became a royal pain in the ass, and we all knew I would be in for a while and requiring intravenous antibiotics and God knows what else. Ursula is pictured inserting the PICC line, whilst I slept through the entire thing. (No sedation even required for that.)

Although my back exploding sounds remarkably like not a good thing, it actually accomplished the job that the drains failed so miserably to do: it got the infected gloop (technical name) out. On top of that, the microbiologists had by this point grown the bugs from the sample of gloop and isolated which antibiotics they were resistant to. It turned out that the antibiotics they were blasting me with actually were the ones the bugs were resistant to, and so I was changed to a new one. Later discussions with microbiologists revealed that the resistance was due to the ridiculous amount of antibiotics I had been on during chemo, prophylactically and therapeutically. It wasn’t good that I had developed a resistance but as the microbiologist said, if you need those antibiotics to effectively save your life – which they did when I was neutropenic – but you know they might lead you to develop such a resistance that could endanger you in the future, what other choice do you have?

It was quite amazing how quickly the change to my antibiotics and my back exploding had a positive impact on my health. I was able to walk and as the days passed I was able to eat food, and I was enjoying it! Of course I still had a lot of fatigue and was definitely not about to run a marathon any time soon, but I really did feel so, so much better. Day by day I improved, feeling stronger physically.

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My room with a view at UCLH. It was a pretty amazing view – we could see the Shard, Canary Wharf, Big Ben, St Paul’s cathedral. And lots of cranes that never seem to move.

Mentally, however, the entire situation took its toll on not only me, but my mum and dad. We each had our days when it felt like we could tread water no longer, as though we had reached our limit and we were not able to keep going. The words, ‘I can’t do this anymore’ were uttered multiple times by more than one of us, and I think it’s important to be honest about feeling like that. It is exhausting trying to keep the faith, and unfortunately when my transfer to Stanmore kept getting delayed it left us feeling winded each time. Getting your hopes up and packing, then having them snatched away and having to unpack is emotionally draining. The entire situation is an emotional roller coaster anyway, even without these extra stresses. Sometimes each of us thinks that we can’t cope with any more of this, but the way that we muddle through this situation is by working as a team. It sounds cheesy but it is true. We can’t always be okay with the situation and we can’t always take hit after hit but remain smiling, positive and determined. I have broken down in the arms of my mum and dad countless times, my mum has had moments when she needs a shoulder to cry on and my dad has had his down days. The main thing is that we are open with each other about how we are really feeling, because that way we are able to support each other and pull each other through each of our own dark days. Personally, I have no clue how I would have got through this and reached this point without my mum and dad behind me. We rely on each other because that is what family do, or that is what I am lucky enough to have a family that does.

Finally, on Friday 16th September I was transferred to Stanmore hospital. It was something I was scared and incredibly apprehensive of; as we drove through the car park I was nervously picking and biting my nails, unable to stay still. I began to work through the advice my psychologist in Jacksonville gave me, reasoning with myself why this stay would not be like the last one, even if I were to, in some dramatic change of events, have the same surgery. Bizarrely, after being taken to the ward I felt surprisingly calm about the situation, almost happy to be here. I had initially wanted to go to the Duke of Gloucester ward, or DOG ward, where I stayed last time. I knew the nurses, I trusted them and knew how supportive they had been physically and emotionally. But as I got settled into the Angus McKinnon ward I began to think that perhaps staying on a different ward to the one I was in last time would be less upsetting. I had no idea how I would have reacted finding myself in such a similar position to the one I was in during the hemi-sacrectomy. Same ward, same intensive care, same surgeons…there would have maybe been too many similarities, too many reminders, for me to deal with.

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Me very happy with my jacket potato with beans and cheese a few days after surgery. This day, as did all my others, went much smoother than my first did at Stanmore.

Despite my initial relief, we didn’t get off to the smoothest start on the ward. There was an issue with the Septrin, my IV antibiotics, the issue being that UCLH did not send me over with a supply and Stanmore did not stock them. This was a worry; it had only been since my back burst and my antibiotics had been changed to Septrin that I had began to show some signs of improvement. After some minor flipping out and a Chinese takeaway, a courier was sent to bring the medication over from UCLH. I got my dose finally at 2am, which meant I had missed a dose. Fortunately my temperature remained fairly stable until the surgery, which eventually took place on Tuesday 20th September.

The night before the surgery the registrar came to consent me. It had been quite a stressful day because on top of the fear of being operated on at Stanmore, there was the fear of the unknown. After the hemi-sacrectomy I had woken up in a state that I had nowhere near prepared for. Even after the massively acute pain eased and became manageable, it was clear to me that things were different. I knew straight away that I was faecally incontinent because I had lost the ability to, to put this in the most delicate way, clench my bum hole. I had not prepared for this. The surgeons had told me the risks but from my point of view it had always been presented as unlikely and as though it would either be okay or not. Speaking to the surgeons about my nerve issues soon after the op, it became clear that they had expected these issues after the surgery but hoped that over time they would improve.

After that, I realised that the worst time to deal with an issue is that moment when you discover you’re actually living it. Of course we can’t always help that, but if I can I like to know all the risks of surgery way before I go to theatre, so that mentally I can deal with encountering them before actually being confronted with them in the flesh. This is also partly why I choose to be open about my incontinence. I can’t imagine anything worse than keeping it hush hush, then having an accident and having to explain, at that very moment which can be very stressful, that actually I’m incontinent and will need the help of the person I’m with. Obviously my opening gambit isn’t, “Hi, my name’s Beth and I am faecally incontinent”; I like to think I’m better at speed dating than that. But making those around me aware of my issues before an incident happens preempts it, puts me in control and allows those around me to help without being super surprised that it has happened.

So not knowing what the surgery would involve, how long it would be, how long I would be in intensive care, how long a hospital stay this would likely involve, and how many more surgeries could follow this one was just a tad nerve wracking. I knew the gist of what they would do – a wash out and debridement (removal of any infected tissue) – but consenting to a surgery when even the surgeons aren’t too sure of what to expect is not nice.

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A Vac pump. Lucky for me I avoided that and just ended up with a big ol’ hole.

To add extra stress, the registrar had off handedly mentioned that after the wash out and debridement, they would likely pack the wound with a vac pump. This does the same sort of job as a drain, but they stuff the open wound with black foam, connected to a vacuum which creates negative pressure and sucks any fluid or gunk out of the wound to promote better healing and force the wound to heal from the bottom up – if the wound was sewn up or healed from the top down, I would find myself in this same mess again with an infection in the same space. Something about vac pumps made me nervous; I had met others with them who had made comments about how painful and uncomfortable they were.

On top of that, the registrar told me that changing the vac pump was not difficult but not easy nor pain free. Having one would mean that I would need to go down to theatre under general anaesthetic multiple times per week, for several weeks, until the wound had healed enough that the pain was bearable with me awake. Basically all very comforting stuff.

I spent the day before the surgery incredibly, incredibly anxious. I wanted to get the ball rolling but I had no clue whatsoever about what I was letting myself in for. Six, seven surgeries? More?! How many were we talking; no one could give me a ballpark estimate. I was told that this wouldn’t be “a two week in out stay kind of job.” But again no one could give me any idea about what kind of stay it would be instead! No one knew how long the surgery would be, which left me terrified I was going to lose my eyesight again like last time after the hemi-sacrectomy. The fear of losing my eyesight was the thing that got to me the most.

I was lucky in the sense that the psychiatric team at UCLH had been in discussions with the team at Stanmore, so the day before my surgery a psychiatrist came to chat to me. It was a much needed chat and I blubbed. When he left my Macmillan nurse came to see me, who I also blubbed to for a further couple of hours. Sometimes you just need a real good cry; it’s good to get it out your system so you can look ahead.

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Me back in Angus McKinnon a few days after the surgery. Unfortunately my PICC line refused to work unless I sat with my arm out to the right at 90 degrees. And then after that, not even staying in that position could get it to work. Luckily I had a central line in my neck that stayed in for a few days so we avoided too many more cannulas. Apparently the central line they used was shorter than normal, because otherwise the PICC and central lines can get tangled in your veins.

Surgery came round and before I went down I saw all three of the consultant surgeons operating on me: one orthopaedic; one spinal surgeon; one abdominal. The most reassuring part was that they were all sarcoma surgeons, so even if the worst was to happen and the unexpected found, I was in the best possible hands. They assured me a vac pump would not be used because it was too close to the nerves and small bowel. That was at least reassuring. I went down to theatre looking glam in my gown, then next thing I knew I was waking up in intensive care. And no word of a lie, I woke up feeling fab, if not extremely drowsy.

Apparently, as I am such an independent woman who don’t need no surgeon (apart from for surgery obviously), my back bursting had mostly sorted the problem itself. The surgeons went in, opened the wound slightly and trimmed the edges, washed it out with a high powered orthopaedic style jet washer (Mr Lordan remarked on how cool it was to use on for the first time and that he wanted one for Christmas) and litres of fluids, and then put a couple stitches in to close where they had opened it up further. They had tried to find the hole in the small bowel where they thought the small bowel content was leaking from but were unsuccessful, so rather than poking around and making it bigger, they left it. The general consensus was that the metal work may have rubbed and eroded part of the small bowel slightly. Although it may seem impossible for the infection to get bet

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Me looking fashionable with my feeding tube. The brown sludge in the bottle was my feed. I would rate it 5 stars. (you actually can’t taste it because it goes straight into your stomach, which is why children on chemo who are suffering with sickness or mouth sores also have them.)

ter if liquid poop is still leaking into my back, in reality – apparently! – it can. My body has created what is called a controlled fistula, which is where there is an exit route, a sort of tunnel, from the infection source to outside the body. The body actually creates a kind of seal to protect neighbouring tissues around the tunnel from becoming infected. As long as the infection continues to drain it is all good. They predict that it will take three to six months to completely close up, by which point so much scar tissue will have formed that the small bowel will now be protected from the metal work. As Mr Lordan says, scar tissue is nature’s super glue! That is the hope anyway.

So I actually woke up in practically the same state I went down in, just with far better pain meds! I spent one night in intensive care then was transferred back to the Angus McKinnon ward. They fitted a nasogastric tube during surgery to feed me overnight for the days following surgery and aid healing. This kept me tethered close to my bed throughout the night, which meant I was treated to personal en-suite service, in the form of a lovely commode.

The surgery went so well that the prospect of multiple surgeries, as predicted, has changed to me hopefully not needing another one. And the stay that was predicted to go on for weeks ended (and this is where the tenses get messed up because I’m now writing this from home again) on the Saturday of the same week my surgery was. Mr Lordan has an utterly fabulous clinical nurse specialist called Sophie who works alongside him, and she has been available to talk things over with me at practically any moment, any day or night.

The day before my discharge, on Friday afternoon, I had a slight meltdown when we Facetimed my brother and Scout (yes I have become that person). I spoke to Sophie about needing to go home, who discussed the situation with Mr Lordan. They both agreed that i

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Hotel service, my lovely en-suite. There’s nothing like sitting on there when your nurse knocks and doesn’t understand that you’re on the toilet, so leads in another male and female nurse.

f I still did not have a temperature at 6pm Saturday evening then I could be discharged. By that time, it would mean that I had been without a fever for exactly forty eight hours after being changed from intraveneous to oral antibiotics. I was desperate and although I tried hard not to, I built myself up massively. Luckily there was no soul destroying moment and something finally went as planned! At 6pm on the dot I spoke to Sophie, who spoke to Mr Lordan and then called me back to break the glorious news. I am lucky to have my other medical teams, but both Mr Lordan and Sophie have gone that extra mile. Never before have I had a surgeon and clinical nurse specialist who agree to see me any time I am worried about anything. It makes the biggest difference, especially to my anxiety which is at an all time high after so many things have gone wrong.

So now I’m out, no more wake ups during the night; lots of proper home cooked meals; the freedom to get out and about as I want; the luxury of getting to be with my family; not being the reason everyone is so exhausted and constantly bending over backwards to try to simultaneously look after Scout at home and me in hospital; and last but not least, my own bed in my own perfect home.

So now I am home, there is still the slight issue of the hole in my back, which continues to leak poop. Three to six months is long to wait but at least it’s winter and I’m hardly going to be parading low waisted jeans and a crop top around town, not that I do that anyway now that we are no longer in the 90s, even without this poop bag. It’s difficult because I am unable to change the bags myself because of where they are, so my mum has to do it for me. It makes it difficult going out without her because sometimes the bag can suddenly leak, but we’ll figure it out. The main thing for me and my family is, and I have everything crossed that this is the case, that we get to spend those months at home.

I am so tired of hospitals. I have spent about five weeks out of hospital in the past four months, and even though I like Stanmore and most of the other hospitals I’ve been treated at, they are not home. I just really really want to be home.

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SO FLUFFY

Don’t get me wrong, being home has had its moments of difficulties: I am the weakest I have ever been, often unable to walk up my stairs at night without the help of my dad; The shower seat and toilet hand rail that I barely used after my hemi-sacrectomy, have been reintroduced as super edgy bathroom furniture; my legs shake whenever I try to move them, so putting on slippers is a fun job. But these things are nothing. Yes, I was in tears two nights ago over my weakness, but then you get up, dust yourself off and keep going because you have no other choice.

It is the little victories, and this one feels massive. I woke up from that surgery feeling like the luckiest girl alive, even though I will potentially have poo leaking out my back for another six months. If someone had told me two years ago I would be happy with that outcome, I’d have called them a bloody idiot. But I’m thrilled, I feel like finally at last I’ve had some well overdue luck. I really do feel so, so lucky. In a way it’s sad that I am now at that point where this constitutes luck, but equally I feel glad that I have learnt to appreciate the small things I would most likely have taken for granted before (example: poo just coming out my bum, not my back too). Honestly, I almost just feel lucky to be alive because I was pretty ill. My mum has told me she was worried I was going to die this time, and I shared that fear. Before all this I did not really think about infections making perfectly healthy people (which technically, immune wise, constitutes me) that ill, but every experience opens your eyes to a whole new world of horrors.

Before I had cancer I did not know that cancer is the number one killer of children, but now I do because I’ve been thrown headfirst into this world. It’s shocking but a lot of days now I see, hear or learn of something that shocks me. I am sure my eyes will be opened to much more before this is over but, and this probably sounds selfish, for right now I’ve had a glimpse into enough worlds. I’m all for education, because this has made me realise how important that is, but right now I am just basking in the warm glow of being home, putting my feet up, playing with Scout and being content in my freedom.

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I tried to get a photo of all of us when I was home but Scout was being a diva and moved so my dad got cut out of the frame.

Just as a footnote, a few nights ago while my good friends were round I checked my temperature. It had gone up again. Before it wouldn’t have been a big deal; now these little things are big things that haunt us. After they left and just before I went to bed, it all overwhelmed me and I got so anxious my mum had to sit in my room with me for about an hour. I told her I didn’t want to go back to how I was at my worst, going to sleep each night and genuinely being scared about not waking up again. The day afterwards I did not had a temperature, and I hoped that I wouldn’t again so much that I muttered it under my breath whenever I came near a thermometer. Early a couple mornings ago at four am I awoke with stomach cramps and feeling absolutely freezing. My temperature was 38.7, and I continued to spike and feel ill over the weekend. I was terrified and my mum ended up not just sitting with me in my room that first night, but every night I felt ill, until I had gone to sleep. Yesterday I went to see Mr Lordan as he was concerned about the symptoms, but I am pleased to report that after seeing me he is not worried. It is a massive weight off all of our shoulders, however for me I feel like it will be a long road to recovering mentally from this latest ordeal, to stop being afraid that I could have to leave home and go into hospital once more.

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12 Comments

Allison

Beth, this truly was a terrifying few weeks and how we all got through it I shall never know. You, my baby girl, are probably the toughest badass warrior ever and I am just so very very proud of you.
I love you more than words can say and you really are my Stargirl. To the moon and back xxxx

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Hannah Maude

Thankyou Beth as always for sharing, it’s thanks to you that I and many others can begin to understand what the big C does to people.. What hell for you, will be praying and crossing every available limb that there will be no more setbacks Xxx Thinking of you as always x

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Pat Harmon

Oh my Lord, Beth what a nightmare! I knew you have been really sick, but I had no idea it was so very bad. I’m delighted to hear that your last surgery wasn’t as bad as you had feared. And even more so that you’re finally able to be at home again. Big, huge, massive hugs, brave girl. I’m so so so looking forward to meeting you and your mum when we get to London in December! Hopes and prayers that you get stronger and healthier each day.
Thank you for posting an update, and for being so honest about everything. Big big hugs.💜😘

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Pamela Gardener

I read the entire blog. Had to,once I started. I have no words to describe your strength. I have no understanding why a beautiful human being as you are– or ANY human or animal should have to endure such horror. My heart remains with you. Please stay strong. I can’t bear the thought of the world without your humor and smile in it. I know you will get stronger and stronger and my hope is that by THIS Christmas, you will be shopping and decorating and posting photos of what you were missing last year when you with us in Florida!

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Pamela Gardener

I read the entire blog. Had to,once I started. I have no words to describe your strength. I have no understanding why a beautiful human being as you are– or ANY human or animal should have to endure such horror. My heart remains with you. Please stay strong. I can’t bear the thought of the world without your humor and smile in it. I know you will get stronger and stronger and my hope is that by THIS Christmas, you will be shopping and decorating and posting photos of what you were missing last year when you with us in Florida!

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Bernadotte Jones

Reading your blog the thing that comes across very clearly is what a fighter you are!! It’s so unfair that life can be so cruel at times to one so young but the bravery and stoicism you demonstrate is inspirational. I am sure your blog is helping other young people in similar situations and others who take so much for granted to be a bit more thankful for what they have. I hope for positive outcomes in the future for you and when this battle is won you will be a truely remarkable champion for other young people waving their own fights with cancer. Love and best wishes to you xxxx

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Marilyn Fletcher

Beth, thank you for sharing all of this. So glad to hear you are home. What an amazing family you are.
Xx

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Bettina

Dear Beth,
this sound awful, what an ordeal it must have been! Thank you for sharing all of this.
Greetings from Germany,
Bettina

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Tracey Mckinnon

Oh Beth you have endured so much, we’re so glad to hear you are home once more and starting to enjoy time with your family and Scout. Stay strong you are an inspiration!
Tracey, Joan, Josh & Jade xxx

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Jackie Owen

Dear Beth,
Thinking of you and your family, I can’t believe what a terrifying ordeal you have been through. Great to hear that you are home and feeling stronger. Best wishes and hugs to you all.
Jackie xxx

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meshack

Beth, thank you for sharing your storys. So glad to hear you are home. What an amazing family you are.you are an inspiration

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