THE NEW NORMAL #57 – THE ONLY WAY OUT IS THROUGH

Hey cancer fans. It’s been a while, but things have been happening and things make me tired these days so that’s my excuse. I had some treatment, I spoke to a dietician, I nearly went to a dentist and I had a bunch of day job stuff to do. I finally finished proof-reading the book version of this blog, returned my little boy to the school system, filmed a patient profile video for MySunrise and did some gardening. It has been a crazy lock-down, shielding whirlwind and as mentioned in a previous post, keeping busy is what keeps me sane these days.

The elephant-memoried among you will remember that I scan a while back and I have discovered a new word to describe this interim period; scanxiety. There really is nothing like it for gradually tightening up your back, giving you tension headaches, subtly distracting you in a variety of ways, running you down and stealing bits of your sleep. The trouble is, when you get the results and they don’t go your way, your body doesn’t quite know how to respond with this energy. The results I got were actually pretty good – blood, bones, kidney, liver, heart and lungs are all free of cancer which is banging news, of course. The less banging news is that there is something called a borderline increase in growth in a lymph node in my pancreatic base. I was going to call this entry All About the Base but that has niche value for my kind of audience.

What does this mean for us now, then? Well, firstly we take a deep breath and focus on the positives. The cancer hasn’t spread to anywhere that it wasn’t before, the new ‘thing’ could be any number of things from cancer to a chess piece dropped in accidently during surgery, and apart from the tiredness I’m feeling pretty good right now. Secondly, we do whatever the doctors tell us to do and, immediately, that seems to be going in for another god-awful PET-CT scan (this is the one where they pump a load of radioactive stuff into you so that the picture is clearer). It’s particularly hard for those with diabetes (like me) because you have to do a whole lot of fasting first and it seriously messes with your blood sugar levels. So, we’re in a position where we get a dip in the scanxiety only for it to build up again until the next scan and then the next set of results. It is mentally and physically exhausting so if you know anyone having a scan or waiting on results then give them some space, let them know you’re there and just be patient with them.

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Things got a little crazy for a minute there and I had to stop writing mid-blog to deal with real life. This week, I had to go for my monthly blood test at the local GP which is fairly unexciting apart from the reminder that I am known on first name terms by the nurses and that they’re willing to squeeze me in because I have ‘good veins’. Then I had another round of treatment which, again, was fairly uneventful but for two observations. Firstly, I was visited by my amazing Skin Cancer Specialist Nurse* who pops up from time to time in order to just chat and make sure everything is OK – and I mean everything, from work and relationships to food and pets. I mention this conversation because she said five words that floored me and nearly brought me to tears; “you’ve been through so much”. Now I’ve heard these words from lots of people before and they are touching but when you hear them from someone who spends the best part of her week talking to and helping those with varying degrees of terminal disease, well it certainly hits home. On her scale of what people have been through, I’ve been through “so much” and that equates to an awful lot.

The second observation was the conversation between another patient and one of the nurses hooking him up to a drip of thousands of pounds of medication. The nurse, possibly Malaysian (apologies if not), casually asked if the patient had received his COVID-19 vaccine yet;

Patient: “Nah, not gonna do that”.

Nurse: “What? Why not?”

Patient: “Well, it’s not been tested properly has it?”

Nurse: “What? 17 million people not good enough testing for you? I’ve had two and I’m fine”

Patient: “Well, I looked on the website and it was too complicated”

Nurse: (pointing at the window) “You see that window? Look outside, you see vaccine centre. Go there, get vaccine. Not complicated”.

Patient: [muttering as he produces a copy of the Sun from his pocket]

Nurse: [walking away shaking her PPE’d head] “too complicated…..?”

Now, somewhat surprisingly, my appointment for a PET-CT scan was booked in quick smart as they followed my Oncology team’s request for me to be booked in ASAP to the letter (also, if any of you read that as Asap rather than A.S.A.P. then I’m judging you a little bit). This meant that almost exactly 48 hours after finishing my latest treatment, I was being prepped for radioactive scanning and, let me tell you, if you ever want to feel truly unpopular, then I can recommend going for a PET-CT scan during a pandemic. I was greeted by a radiologist in the most PPE I’ve seen anyone wearing so far (all that was missing was a tin foil hat to stop the government reading her thoughts) and, after the standard temperature check and hand sanitisation, I was ushered into cubicle. As is standard process, I was checked over, answered an extensive questionnaire and then had a PIC line inserted into my forearm, ready for the radioactive element to be introduced intravenously. As soon as this was done, the radiologist loosely applied a plaster to the spot on my arm where blood was still oozing out and, backing out of the room, said “I’m going to leave you in here for an hour now as you’re quite radioactive. If you need the loo, use the one in the corridor because your urine will be radioactive too”.

This was my third PET-CT scan but the first time I’d been told that my urine was radioactive and also the first time I learned that the reason they leave you for an hour in a tropical island themed room with low lighting is so that you properly relax. This allows for the injected solution to be taken up by my body but, crucially, not by my muscle if I relax properly (I’m assuming that getting this stuff in to your muscles makes you either superhuman or super-sick so I’m happy to avoid that particularly scenario). The irony (of course, there’s always irony with me) was that in the corridor just outside my cubicle they had left the radio on playing the blow-by-blow commentary of Plymouth Argyle vs Bristol Rovers which was heading into the final half hour with Argyle holding a precarious lead – not relaxing for an Argyle fan at the best of times.

What was relaxing, however, was the scan itself which last 45 minutes and which I largely slept through, only waking myself by snoring too loudly and then at the end because of the cheery chime that either told me that the scan was over or that my spin cycle had finished. The unpopularity continued as I was told “you are free to go” before I had even got out of the scanner or put my trousers back on which led to the ever obedient me going from trouserless and lying down to fully clothed and trying to negotiate a parking meter within about three minutes. This is one of the unseen sides of COVID which means waiting areas, particularly small ones, are out of bounds so please be a little understanding if you see a number of dazed looking people shuffling around outside hospital (more dazed people than usual, that is).

Regular readers will remember the heartache of my first PET-CT scan which leaves me in a state that necessitates a distance of three feet from anyone under 18 or any pregnant women for eight hours. The same applied here so my little boy was pretty upset that I wouldn’t be giving him a goodnight cuddle again but this time we had prepared. Thanks to the people at Scamp and Dude (and a very kind nominator), we had acquired the dinosaur that is featured in the at the top of this post which is a buddy for little ones whose parents have to go into hospital. This little fella, now called Kobe, can hold a photo in its cape of the parent in question and gives the little ones something to hold on to. There were still tears when I got home and almost flinched if he approached me but knowing that Kobe was preloaded with a bunch of hugs from me got him through the night and I got the biggest morning hug the next morning so normal service has been resumed.

Finally, the timing of this blog is quite deliberate and fairly poignant too. I’m publishing this blog on 23rd March 2021 which is five years and one day since I got my original diagnosis telling me I had a year to live, five years if I got very lucky. So, count me very lucky to still be here and very much not taking a single day for granted as this journey with cancer continues. Today is also the eve of the one-year anniversary of being told that I had months to live at the beginning of lock down which, now that we’re at the year mark, I think puts that one in the bin as a theory. This means that I’ve tackled cancer head on twice in terms of diagnosis and out surviving the odds and that’s what I plan to keep on doing. Whatever this scan finds I will keep following the advice, keep fighting and keep moving forwards one day at a time, one step a time, one hand over the other on the rope that I’m using to pull myself out of the quicksand of cancer. There’s no use looking back and I can’t look too far forwards but I have to find a way out and that way is through. Through the scans, through the treatment, through the bad days, through the good days, through the tablets and through all the time spent on the toilet. It is the only way so I’m taking it, however many bumps there may be in the road.

*It should be noted that the Skin Cancer Specialist Care Nurses are there for the patients AND their families and they are angels – angels will excellent admin skills, empathy, experience and knowledge.