I promised myself when I started this blog I would keep it true. That no matter what the reality of my situation was I would share it. Not because I want to aim to scare anyone, because I don’t, or even really to be “educating” people in what it’s like to be a cancer patient, because I’m fairly sure it’s one of those things you can’t really understand unless it happens to you – and please god none of you find out. But because, well, the internet is a place full of smoke and mirrors, where people only share what they want to share and that’s always the wonderful, beautiful parts of their lives, and while I’m loving a snapchat filter to hide chemo-ravaged skin, on the blog I’m just not up for that. Here is a place for honesty, for my version of the truth of my situation. As a result, this post is crazy because this cycle has been crazy. So, here goes.
Chemo was on the 26th of October, it ran late because of having to stay home later than usual to have my driver changed and then head in. It went well though, ran without issue.
I really suffered the first week, between hot flashes and worries about urine infections because the pain I was experiencing from a UTI that began at the very end of the last cycle. I was checking my temperature regularly and had nurses out to check on me frequently, we had titrated over from the morphine pump to fentynal patches too so there was some concern I might be going through a little bit of withdrawal while my body adjusted to the new type of opiate going through it.
Yet the pain while I was going to the toilet was getting worse and worse, then started to travel up my right side to my stent and that is when the weekend from hell began.
The events of Friday 2nd November and the Saturday that followed left me trapped in a perfect storm.
I had visited A&E on Friday after both the district nurse and my Sue Ryder specialist nurses decided enough was enough. I needed a scan. I was in so much pain, a new morphine driver was put in just to help me get to the hospital as well as an emergency dose of morphine injected.
So, off we went to A&E seeking help with the stent in my right ureter causing me added pain, we were unable to achieve that goal fully. During my stay in majors the original morphine shot I had been given started to wear off, we had requested another sub-cutaneous morphine shot in A&E, but before they could get to me and after 6 hours in A&E we were eventually transferred to Acute Medical Unit. By this time I had been waiting an awfully long time for my morphine shot and was in so much pain that I had to be patslide-ed across from my A&E bed to the bed on the ward. We re-requested the shot on the new ward and the wrong type came, so it had to be re-written up. By the time it was administered I had been waiting 4 hours in total for the shot.
Thankfully I saw a truly wonderful Dr, she carefully examined me, listened to me, cared about what I had to say but with a bit of a frustrated look in her eye had to inform me at nearly 5 pm it might be really hard to get hold of anyone in urology as they’d all be heading home at that point. But, she ultimately agreed I needed a scan, although that may now not be able to happen until the morning and she needed urology to order it.
I don’t know what she did, whether she ran down the urology department banging on doors until someone helped her out; but she did speak with a urology doctor that early evening who looked at my blood results which thankfully showed really good renal function, and that meant that my stent couldn’t be dislodged or blocked and that sometimes stents can present these UTI similar symptoms, try taking buscopan and go home.
By this point we were in the hospital for 8 hours, two of those I was in a bed on an open bay just 7 days into chemo. I felt incredibly vulnerable there. But sort of luckily, I was discharged and home we went – although we could tell my Dr was unsatisfied with the outcome of the situation, there was nothing else that could be done without Urology playing ball and agreeing to a scan.
Sadly, the hospital posted out my discharge notice late, which meant the district nurses did not factor me in on their route as usual on Saturday morning. They thought that I was still admitted. I had to call and wait for them to come out, meaning I was without my morphine pump for 3.5 hours. This set me back on pain relief in a huge way, one it transpired, I couldn’t come back from easily.
We had to call every 4 hours for morphine injections that day. By the time the nurses turned up to give me the one at 11 pm I had fallen into a state where I couldn’t move or speak for the pain. I remember the nurse giving me the jab but by that point, I was too far gone.
The nothing short of weird and slightly events of those particular 48 hours had lined themselves up like soldiers in a firing range, with me as the target. There they all stand, shooting at me, but I cannot move, duck, run. Instead, I just stand there. Seemingly able to watch their bullets fly at me, rip through me in slow motion.
It goes on, and on, relentlessly, I wonder if they might ever run out of ammunition. I become fairly sure that they won’t.
But then, suddenly, something snaps through the sound of the automatic weapons shooting at me so very clearly, it’s a voice telling me that my ECG is ok. That it is clear, and then this whole thing becomes clear. This is panic. This is anxiety. This is not me.
There conspired the events of those days, to get me, to pull me down. For a little while, although it felt much longer, they did. Because what I realise now is I don’t think I have ever really let myself stop, allowed it to sink in. That this huge thing called cancer entered my life, or how it has ripped it up, thrown it around and left me scrabbling around on the floor to pieces to put back together. Half the time I think that’s because I worry if I let it in it means I am accepting it as a part of me, when I feel like in order to fight it I need to outwardly reject it in every form possible.
The events of Saturday night, well, they showed me just how hard I have been pulling at things to keep them together. For the kids, for Tom, for my family, for everyone. It made me realise I don’t let things out enough. I don’t let myself despair at the enormity of the situation or spend too long dwelling on what my life should be without cancer. Because, if I were to do that, I think I am not sure I could find myself back out of that particular rabbit warren and that frightens me even more.
Things were also aggravated by my mid-point scan which would be happening on the Monday 5th November, I knew I had been nervous about it, but I’m not sure I realised just how nervous and anxious it had made me. The scan itself went well and without incident, but then I faced a 10 day wait for the results. It was almost lucky I still had a pain issue to take my mind off of the wait for scan results looming over me.
Tuesday 6th lead to a planning meeting with Maria the amazing Sue Ryder nurse. We knew I had to do something to fix this pain, there I was still, days later taking buscopan and still having pain when I went to the toilet. Yet A&E got me nowhere, I had no infection and I’d been pumped full of antibiotics of all kinds for 13 days straight. It had to be the stent, but my pre-op to have the stent changed wasn’t due until the 20th of November, four days post my next chemotherapy date. Well, that just seemed like an impossibility to me. We agreed I would phone the following morning to try and bring forward the date myself, and if I had no luck, Maria would contact the Urology clinical nurse specialist (CNS) and enlist her help to tackle the issue.
As agreed the following morning I phoned the pre-op department to try to move it closer but was told that they were fully booked through until January. I’m sure you can imagine that the thought of being in the kind of pain I was in until January just scared the life out of me, to be honest. After a bit of a long drawn out story to the poor woman on the phone, and she kindly promised to try and help me out. An hour later she phoned me back with an appointment in pre-op the following day and the even better news that my procedure would be carried out on the following Monday.
Finally, a complete success that resulted in me thanking the wonderful woman in pre-op profusely for her help – the word angel was even used. I’m not sure she had ever witnessed such joy at a procedure being moved so far forward.
And so the weekend began with many “Stat” doses of morphine to help with the worsening pain from the stent, the thought of my change on Monday was the only thing getting me through. Thankfully, my procedure on Monday went well and without issue.
I went through my third (meant to be good) week recovering from the stent change but heading in the right direction, but still relying on stat doses of morphine to help with extra pain after the procedure flaring things up all over my bikini area where the pelvic tumour is.
The rest of the week was spent simultaneously eagerly and dreading my clinic appointment on Thursday. This was when I would be receiving the results of my midway CT scan. The nerves really began the night before the scan and I really didn’t sleep so well. I woke up in pain and had to call in for a morphine stat shot which risked our appointment time, but luckily a Dr came out to me super quick time and we still arrived at the hospital in time to get a parking space, find a wheelchair (the pain from the stent settling left me unable to walk the length and breadth of the hospital), get some breakfast and still arrive at the clinic early.
Unfortunately, I saw my CNS (clinical nurse specialist), who until this point has only been present to give bad news, and this almost triggered an anxiety attack. But she walked away from the consulting rooms and out of the waiting area, so Tom was able to calm me down and we got chatting about all sorts of stuff. During this time I must have been distracted and not noticed the CNS’ return, as she all of a sudden was standing before me calling my name. I clutched my bag carrying my driver and followed her into the consulting room where Tom and I sat, while we reminded me to try and stay calm, we have no idea what’s going to be said and then we got talking about Apple watch straps just to keep my head busy and me as calm as possible – you see, they do this weird thing in our hospital where they see you into the room, then disappear for a few minutes into an adjoining room to talk about you some more, then come into the room and you have the appointment. Odd, and disconcerting really.
But then the door opens and in walks my consultant with a huge smile on her face, followed by the CNS with a huge smile on her face, and an oncology registrar, with a huge smile on his face. The conversation that followed went like this:
Both of my tumours have shrunk. Both of them. A little bit. But I’ll take that. We are officially heading in the right direction, despite the worrying start to the cycle and the huge panic attack that terrified the life out of everyone including the paramedics.
If you managed to make it this far through then I applaud you! It has been the longest round-up by far and the craziest cycle by far. We go into cycle 4 (5) with a little bit of irritation and pain caused from the stent change but in general in a far better state than I went into cycle 3 (4) with. So here’s to cycle 4! Here’s to shrinking those tumours even more and making even better progress. Let’s smash it!
Lots of love to all of you – your unending support and love has meant the world xxx