A Blow to the Head

“Sometimes life's going to hit you in the head with a brick. Don't lose faith.”  -Steve Jobs

The day of the oncology appointment had finally arrived so we could find out the way forward. I was still an inpatient at the hospital following the 999 saga, so Andy wheeled me down to outpatients to see my surgeon first and then the oncologist. This was much to the disgust of the hospital staff, who like to keep inpatients and outpatients separate; I was asked several times if I was in the right place sat in the waiting room in my pyjamas!

What came next was an absolute blow to the head. We were told that the cancer was the worst and most aggressive form of cancer there is (T4b, N2b, M1c, EMVI positive grade 3 adenocarcinoma of the splenic fracture - for those of you who know about these things) and that it is incurable and the chance of recurrence is extremely high. They plan to carry out a six month chemotherapy treatment comprising of Oxaliplatin and Capecitabine in an attempt to keep control over the disease and have also made a referral to Basingstoke hospital, which is a centre of excellence for this type of cancer, to seek their advice.

My first reaction was, “But what about work! I can’t have that much time off!” Apparently this is not an appropriate thing to be worrying about when you have just been diagnosed with stage 4 bowel cancer; that’s what my friends, family and colleagues say anyway! 😜

The staff in the Macmillan unit were fantastic, especially when we came out of the consultation room and, thinking the corridor was empty, I said rather loudly, “We’ll that’s just fucking shit isn’t it?” and then burst into tears. A nurse appeared from nowhere and ushered us into a quiet room.

This was the day I stopped believing in karma. The concept of karma has got me through some of the darkest times in my life and it has served me well as a crutch to get my head out of negative spirals when things seemed so unfair. But the really bad things that have happened to me before could almost always be blamed on someone else, allowing the karma concept to work for me; it doesn’t work for cancer...I’ve never done anything that bad!

Chemo was due to start in two months to give me a chance to recover enough from the op.

999

A spanner in the works

So, home from hospital and my only job was to heal from the op... boorrring! Andy had to go back to work because he had had so much time off, so I was mostly home alone. I spent a lot of time reading novels and sleeping.

The district nurse had been round and removed the staples from my wound and the stoma nurse was coming weekly to check on me too. 

In general, although each day things were getting better, I was still in pain and quite uncomfortable. On day 19 post op, I was in agony in my tummy. At first I thought it was just the normal trapped wind or post op pain, but it continued through the night until eventually I conceded and Andy called an ambulance because I was in so much pain, I didn’t feel I could travel in the car. The 999 operator took down all of the details and told Andy that someone would call back within two hours. As it was about 2am, Andy told me to try to get some sleep. I had taken the maximum doses of morphine and paracetamol and must’ve dozed off because the next thing I knew there was an ambulance in the driveway and two paramedics knocking on the door. It’s quite surreal having paramedics in your bedroom at 4am, hooking you up to all sorts of machinery! Anyway, they said we had done the right thing by calling and decided to take me in. 

When I arrived at A and E, they pumped me full of morphine again and arranged for a CT scan. My bloods showed that my inflammatory markers were high, but the scan showed no sign of infection. The pain became more intermittent and they kept me in overnight for observation, but no real reason was given for the flair up.

The Surgery

 “One is never afraid of the unknown; one is afraid of the known coming to an end.” Jiddu Krishnamurti

The two days running up to the surgery were a complete blur...nil by mouth and high on morphine (and god know what other drugs they were pumping into me). The histology from the biopsies came back and confirmed I had bowel cancer. The consultant said the scan seemed to show that the tumour was only attached to the bowel, so removal should be pretty straight forward. My knowledge about cancer at this point was zero as you have to go back to my great grandparents before you find any history of cancer in my family, so I just had to trust that everything the medical professionals were doing was right. 

The day of surgery arrived and I didn’t go in for prep until reasonably late in the day... about 4pm I think. I had never had a general anaesthetic before and the only operation I have had was a cesaerian section when I had Beth 18 years ago. I was scared. Being wheeled in to the theatres, I was convinced that my time was up and today was the day I was going to die. When they put me under, I was crying. 

When I came round, I looked around, disorientated and I remember my first thought was wtf has just happened. I slowly began to take everything in. “I’m still here, alive! What the hell is that thing in my nose! I can’t actually move! Where’s Andy?”

I don’t know how long it was before Andy came and then I was moved to the critical care unit. I don’t remember much about that place, but I remember being hooked up to loads of machines and it felt like I was on an alien spaceship.

It turned out the surgery had been much more extensive than originally anticipated and they had found that the tumour was, in fact, joined onto some of my other organs. They had not only removed part of my colon, but also about 20% of my stomach, part of my pancreas and one of the main blood vessels to my spleen. The surgery had taken much longer than expected and poor Andy had to just sit and wait, worrying it had all gone wrong.

Back on the ward, I began to realise the extent of what I had just been through. I had a drain tube going into my left side, a catheter, numerous lines in through a cannula and a tube in my nose which had a bag on the end (that was horrendous and I just wanted it out! Apparently it was to drain my stomach while it healed). I hadn’t even known about the stoma... didn’t even know what one was and now I had one! 

I wasn’t allowed to eat or drink anything for days...just sips of water to moisten my throat. My skin became really dry and bumpy. You could see the amount of weight I had lost (now 3 and a half stone) by the baggy skin on my arms and legs. I didn’t know how I was surviving on intravenous fluids alone and no nourishment, but apparently you can. I had many visitors and we had a good laugh to divert the focus away from the horrendous things that had just happened to my body; the concept of me having two bum holes became a source of hilarity one day when both my kids and their respective partners visited (much to the scorn of the nurses, haha!). It is a bit of weird tradition for people to come and visit you in hospital to see you looking like shit and at the lowest point you can be though isn’t it? A bit like a freak show!

Within a couple of days, they wanted to get me out of bed to stand up. I was convinced that there was no way I could stand up in my condition. In my head I was thinking, “Are you insane? Can’t you see what I look like? I’m not ready to stand up... come back in a week or so!” Anyway, you do as your told, don’t you? I couldn’t have them saying I couldn’t do something they’d asked me to do! So, feeling like utter shit, and with the help of two nurses holding me and all my tube and bags... I stood up.

Each day they made me so a little bit more: walk to the chair... sit down for 10 minutes... sit for 20 minutes... get yourself in and out of they bed without help. I hated it, but you do it anyway because you don’t want anyone thinking you can’t. 

Next they removed the catheter, so I had no choice but to get myself out of bed to go to the toilet, wheeling my drip stand and carrying all my drainage bags. It was really hard. Gradually, as the days went on I walked a little further each day, and lines and tubes began being removed. My planned discharge date was the Monday (day 11 post op), but due to my progress (and the fact that I live in an accessible bungalow) this was brought forward to the Friday. Then on the Thursday before I was due to be discharged, the doctor asked me if I wanted to go home today. It turned out it was because they needed the bed. We were still waiting on the hospital pharmacy to sort out my meds to go home so we were asked if we would mind waiting in the ‘discharge lounge’ so they could have the bed. 

I was pushed in a wheelchair all the way to the other side of Ipswich Hospital to this so called ‘discharge lounge’. Basically it’s like a bus/train station waiting room and, bearing in mind I hadn’t been able to sit in a chair for more than 30 minutes on the ward without then having to lay down, a completely unsuitable place for me to be left to wait. It was just ridiculous! The lovely nurse in the discharge lounge, realising this was a big problem for me, began chasing the meds from the pharmacy, who told her that it would be at least an hour. I began to cry because I knew I couldn’t sit in a chair for that long. Andy decided that the only option was to take me home and come back for the meds later (a 2 hour round trip)! Even when he went back, they had mucked up the meds and he had to wait around while they sorted it out. It was such a shame to end my stay at the hospital with such a horrible experience, because up until that point, all of the staff had been fantastic.

Once home and with all of the meds I needed, it was a three week wait before the histology report would be back and a way forward would be decided. Three weeks of limbo... and pain...and lots of morphine and paracetamol.

The Diagnosis

“The best laid schemes o' mice an' men gang aft agle” 

Robert Burns

I had been known amongst colleagues for my cough for a few years. They knew it was me coming down the corridor; they could tell by my cough. I’d had different antibiotics and chest X-rays when it got bad, but generally it would clear up and go away for a couple of months or so. I even broke two ribs in 2011 from coughing! Little did I know that this was to be an early indicator of my illness.

I’d also been having stomach issues for a few months, so was exploring food intolerances and allergies. I tested negative for coeliac disease, though I was finding that a gluten free diet seemed to help somewhat with my tummy pain issues. I also became very interested in food combining (introduced to me by Granville). This also appeared to alleviate some of the symptoms. The doctors put me on Mebeverine tablets which I’m not really sure ever made any difference, but I took them anyway.

Our holiday in Gran Canaria in Summer 2017 was when the coughing became really bad, hacking and continuous. That’s when Andy sent me to the doctors. I went through the rigmarole again of antibiotics, chest X-rays etc. But after weeks of tablets and tests, they couldn’t find anything. They decided it could be silent reflux, so they put me on Lanzoprazole.

I started my first headship in September and not long after, the stomach pain started to get worse. Initially I put it down to the stress of the new job because I couldn’t pin down any particular food causing it. I began losing weight. I went back to the doctors (I hadn’t really stopped going back, it felt like I needed 3-weekly appointments booked in advance). They referred me for an ultrasound, which came back fine, so then they referred me for a gastroscopy (at the time one of the most horrendous experiences of my life!). The gastroscopy showed I had gastritis and oesophagitis but also some bile in my stomach. They upped my dosage of Lanzoprazole and told me to take Gaviscon as well. They advised I ate soft, plain food to avoid irritating the gastritis and let it heal.

Over the next few weeks and months I lost more weight, the abdominal pains were getting worse and worse and sometimes I was coughing until I was sick. I was seeing a doctor every 2-3 weeks but felt like I was being fobbed off. Anti sickness tablets were prescribed but didn’t really work. Codeine was given to cope with the pain. By this point I had lost about two and a half stone and couldn’t stomach much...not even alcohol!

By January, I had started to have night sweats and hot and cold flushes, so the doctors shifted their focus towards early menopause for a while. By mid January, the pain was becoming unbearable. I saw a doctor and told him I could feel a lump in my abdomen . He decided there might be a blockage in my bowl so a higher dosage of codeine was prescribed for the pain and Movicol for the constipation. This didn’t work so I went back and saw a nurse practitioner who agreed she could feel the lump too and brought a doctor into the room to confirm this. I was then referred for another ultrasound and also a colonoscopy.  The ultrasound again was clear (as they “Only look at kidneys and the reproductive organs, not the bowels” I was rudely told by the sonographer). The referral for a colonoscopy got lost in the system!

So after I chased up and got re-referred to the hospital for a colorectal appointment on 7th February this year, the consultant immediately arranged a CT scan. By the 9th February, the consultant had called me saying there was a large lump which could be an abscess but most likely a lymphoma. He sent the scan to the Royal Marsden for a second opinion before deciding on the way forward.

This was the first time a cancer had even been mentioned. I was in so much pain I had been put on slow release morphine and oramorph and signed myself off sick. We just clung onto the hope that it was an abscess and not cancer.

I received an appointment for a sigmoidoscopy (like a colonoscopy but exploring a specific part of the colon). However, in preparation for this procedure, I was sent sachets of a drink I had to make up with water and take at regular intervals over the two days before the procedure (bearing in mind that by this stage I couldn’t even keep much fluid down and was vomiting 3-4 times a day). This evil liquid not only tasted disgusting, but gave me the shits for the whole weekend! This experience definitely outstripped the gastroscopy in the ‘most horrendous experience’ tables!

So, on Monday 26th February, I woke up in so much pain that I couldn’t even move. I called the hospital to say I was not sure I could even get in the car to come and have the procedure and that we may need to go to A and E instead. They advised I took some more morphine and come in straight away as A and E would only delay the process. Luckily I was able to get into the car and get to the hospital (with Andy’s help of course, as I hadn’t been able to drive for at least a week by this point due to the morphine dose I was on). They carried out the procedure and took biopsies which confirmed that it was definitely cancer. They admitted me to hospital the same day.

The following day (Tuesday), I was told that they would be operating to remove the tumour on Thursday...