Oncology …. readiness for Radiotherapy

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28/03/19

I’ve had a bad couple of days following my Heart of Darkness delving. Its made me cry a lot! Too be honest, I’ve cried about my hair again and tried to bury the actual reason why I wouldn’t stop crying. My hair is still my nemesis here. I hate it so much and am so upset that it still bothers me so much. The visual look is so shocking and awful that I am still reeling every day from it. Aaaagh. I have become a mirror avoider, I was never the biggest fan of looking in the mirror anyway but now not doing any makeup (as what’s the point?) I am avoiding it full stop and purely relying on the man cub to tell me if an outfit falls short of the mark. Hopefully he doesn’t let me run with a bad one – I don’t think he would!

But back to today, a 6am start (cheers cub!) and squishy hugs in bed for an hour before we finally faced the day, I was ready for the Oncologist at a new hospital, a new environment to me, to get ready for the next wave in the journey. Today is the start of the radiotherapy journey. I can’t get through this quick enough. We were also testing the water as the 40min journey can be variable as the weather. As younger adults we both worked in town so know the craziness that the traffic can pose (and a random accident can set everything off by an easy hour). We’re still trying to work out logistics of how I can get to 20 appointments over four weeks with one car, a cub that needs school and a man cub that needs work in the opposite direction to the hospital. As if I haven’t got enough to manage and sort out already while still working full time. FML.

So 75mins after dropping the cub in breakfast club, we arrived at the latest hospital in my journey (with a random detour into a housing estate when I read the sat nav wrong!), and while we were on time for the appointment at 9am, I still waited 30mins to be seen. My admiration for the Oncologist is rapidly falling down the ladder. Wasn’t helped by the Receptionist who checked me in – what’s your name, Morrison, do you have a car park pass, no not yet, let me check (thumbs through a lot of envelopes) – no we don’t have that here yet so let me check you in for your appointment, thank you, hmmmm what was your name again, Morrison, oh yes I did see that in the car park pass pile – I thought you said Charlton. The man cub by that point had took a seat and was looking thoroughly disgusted!!!

I mean, don’t get me wrong – I am grateful for the car park pass! The hospital kindly give us cancer patients a pass. So for the princely sum of £10 I can park everyday for radiotherapy and appointments for free. Bearing in mind hospital parking costs (and the fact I used to have to be in chemo for three hours or more before it dropped to a pound (still had to do some paperwork and leg work for that!) ) I’m ok with the assistance. I’m not sure if its just a cancer thing or whether they do this with all patients with reoccurring appointments. I’d like to think I wasn’t that special with the cancer! I also forgot to tell you all that when I rang to get the pass, they told me to keep it once I was done with it – ‘incase I ever needed it again’. Well, that was a positive little conversation with them, wasn’t it. Cheers for that. I’ll anticipate secondary cancer and I’ll be back here in a couple of years to reactivate my card. No thank you. Oh – the bloody customer service / messages that NHS staff have with people really needs a revisit. It really does.

So I have completely digressed into car park payments, so back to the new waiting room. It is a brand new wing of the hospital (brand new – read in the last five years) and it is lovely but still feels like a hospital. We sat in uncomfortable seats, surrounded by some nice art work. But were thoroughly bored. The only interesting thing I did read was that there was a Maggies Centre at this hospital (don’t have them at the previous two hospitals where I have been treated), which is a space to go when waiting for appointments or between appointments. I might need to visit that space. And find out more about it.

When I was finally called for my appointment the Oncologist discussed the side effects of radio (I still haven’t fully read the ridiculously long document!). Radio will require some tiny tattoos (still don’t know what this is), could affect your lungs and breathing (great), could affect your heart (lovely), could cause furthers cancers in 20 – 30 years time (smashing), will cause skin dryness and burning (bring it on), and further hair loss (I don’t have a single hair on my body to lose – not a problem!!). She then asks would I like to sign to say I consent. Well YES mate!! Of course I want to sign that. Dear me, these healthcare professionals need to slant the messages in a different way. I really think a marketing team need to get behind NHS staff here so folk like me don’t start tearing them apart. I could easily be swayed to not do treatment based on this matter of fact attitude as there is no positive mentioned in the analogue. And while I am a trusting member of the non medical world, I am slowly starting to understand why people start checking out of this process. The clinical, sterile approach to something that is so devastating is hard to reconcile. If I was a pure Google fanatic I would be dissing this off very quickly I’d imagine. I know that I could easily be swayed by alternative medicines (which I am not against – just haven’t read up on), that have a positive marketing spin, as this negativity is wearing me down.

The laissez-faire attitude is done in under two minutes after I sign the paperwork without a murmur (shocker – I’m such a conformist!), and I am sent to get measured up for a positioning situation to have the daily radiotherapy. We are due to wait another 50 minutes. We wait 90!

The man cub is more furious on my behalf at this point. I am a bit more benevolent. I know I am a number. Much as my lovely Pauline and consultant have been amazing, this isn’t a norm and its hard to see how it can be. My Oncologist must have a caseload of thousands (considering how many people I see in waiting rooms), so why would I be special? I have to trust that she has read my notes, made a recommendation and trust the process. There are also people here who are numbers too. Waiting in line to be seen for 10/15/20 mins just to get whatever treatment it is to move onto the next stage of the journey. I guess I am becoming slightly immune to the waiting game and accepting that once I am in there – if I take longer for an appointment someone else if going to be waiting. And that is ok.

When I finally get taken through to the changing room, I suddenly realised the hilarious situation – I had a pair of long stockings on under my dress (it was a tight fitting dress!! And I am going straight back to work and have meetings which is the reason I am doing smart wear!). I had to take the dress off to put a gown on so I could get my baps out for the scan. Geez, I absolutely rolled about laughing as I was waiting in the smallest changing room ever (think swimming pool size!). Stood there with suspender tights on, knickers, no top half clothing, just a gown. Utterly ludicrous!!

What followed once I was called was also ridiculous crazy situation. I had to jump up onto a solid hard bed, legs propped up by a v shaped cardboard cut out, then I had to throw my arms up in some stirrups. The glamour had hit new lows, this was a smear test uncomfortableness for boobs on steroids. All of this was also not helped by the young trainee student (the hospital is a training ground for radiographers) who was a lovely young man who looked more uncomfortable than I did!! (I am not against trainees but first appointments for this craic aren’t great for the poor patient). There was then a lot of measurements (from some laser red beams that I couldn’t see) shouted out; permanent tattoos (tiny pin prick ones) put on my body (and also a lot of bloody pen marks which apparently won’t be permanent!), and a swing through a tiny MRI equivalent (I did have a mild panic that it was a big machine and I was face up but it was only 10 inches wide if that!). Then I was told that was it. My dates would be given to me by Reception for the first few weeks of radiotherapy. I was free to go until my life was going to be dictated daily by a 10min appointment. Every weekday. For four weeks. Yay!

But I have this, and four weeks – 20 school days; is nothing. I will get through it