Radiotherapy and the end of the line.

 

The Bell

 

With chemotherapy finished (treatment wise, if not symptom wise) the next step was to regroup ahead of the start of radiotherapy and also to think about having my Hickman line removed. While I have loved the ease with which it allowed blood samples to be taken and chemo to be administered, it was something I was eager to discard. The fact is, it’s a foreign body and your body had its own way of dealing with such. In most cases the exit site of the ‘line’ never fully heals and offers the extra possibility of infection, which is the one thing we are all desperately trying to avoid. In my case, the exit point was always weeping, not copiously, but enough to keep scabbing over which really pulled on the surrounding skin – invariably when in bed. This just offered another source of nuisance  in the pantheon of things stopping me from sleeping. Plus if I’m honest, I was just a little bit fed up of finally getting to sleep only to wake myself up by lying on the plastic bung at the end!

But first things first. Three weeks after my last chemo I was back at the Christie to prepare for my radiotherapy treatment. This planning visit is designed for the staff in the radiotherapy department  to tell you what to expect and to gather the information that will be required for treatment.

I had a CT (computerised tomography) scan taken of the are to be treated. This helps the oncologist and radiographer to plan the exact area for radiotherapy. The scanner takes numerous pictures from different angles allowing a 3D picture to be obtained. The process involves lying on a pretty hard and flat couch, similar to the one that is used in the radiotherapy unit. Once comfortable (or as comfortable as you’ll ever be), the co-ordinates of your position are recorded to make sure you lie in the same position in future. While the procedure is relatively quick and painless it is disconcerting to see all the staff leaving the room. You also discover that lying prone, semi-naked with your right arm up behind your head for  5 minutes seems much, much, longer. Of course, I managed to have a coughing fit, halfway through which had all the staff running back in and we had to start the process from scratch!

 

Photo-of-a-CT-scanner.png
Ima

 

The information from the scan is fed into a planning computer, which is used by the radiotherapy team to work out the precise dose and area for treatment. Once the treatment area has been decided, markings are made on your skin to help the radiographer position you accurately for the forthcoming treatment. These are usually, permanent markings (tattoos) and I have to say I was not looking forward to this. I focussed on the word tattoo and was convinced it would hurt. In reality they are the size of a pin head and it was over almost before I realised it had begun. It certainly wasn’t painful (hurray) and now I can tick tattoo off on (my non-existent) bucket list. I now have a delicate little dot somewhere underneath my arm at the back (I’d need to be a contortionist to see it) and another right at the top and centre of my cleavage. And that was that. Once dressed, I was despatched with the gown I had been wearing to bring back and use throughout my actual treatment. All that was left was to amble over to the chemotherapy department, have my bloods done ahead of my line removal and await my Herceptin injection as it was clearly my lucky day and I got to have three things in one day.

 

The Line Out!

 

A couple of weeks later and I was scheduled to start my radiotherapy. But before that I was due to have my line removed, about 2 hours before as it happens, what could possibly go wrong? I’d been told to have my bloods done before the line could come out and having agreed it could be done the day I came for my CT scan, it now appears this was no good as I’d had my injection since. So the day before my procedure it was agreed I’d come in half an hour before I was scheduled to have the bloods done within the Integrated Procedures Unit. I duly arrived and not surprisingly no-one knew anything about needing bloods done. So it took 15 minutes to ascertain that I did and another 15 for someone to come and claim me to have the samples done. At this point you’ll have sussed I should have already been having the line removed and it was going to take 40 minutes for the blood results to come through. So not only was the line removal knocked back, my radiotherapy was not going to happen on time either. So I go into damage limitation mode and try to sort things out with radiotherapy to let them know the situation, or I would have if anyone had answered the phone. Meanwhile, the receptionist said she’d keep trying and I prepared to sit and wait. Bizarrely after 20 minutes my lovely Spanish nurse (from the line insertion) appeared and said he was ready for me. So either the bloods were tested in record time or someone had decided based on the previous results that they were OK after all. To be honest, I didn’t really care, I just wanted the line out and the procedure over with. Now as with the insertion, this involved a very stinging couple of injections which was the worst part of the whole thing. Essentially once I was numb it was basically a case of pulling the line out – not as awful as it sounds and not at all painful. Throughout the procedure I was able to catch up with my nurse as we swapped our holiday and trekking tales, as well as future holiday plans. It made the time fly by and after about 20 minutes I was all done and dusted. In fact I’d be able to make it over to radiotherapy and hardly be late!

 

Radiotherapy

Well, it transpires that while I’d been swapping holiday tales, I’d been unaware of a fire alarm that had gone off over the other side of the building – in the radiotherapy department no less. OH had been party to the news as he sat and waited for me. Needless to say when we’d got over to Radiotherapy virtually on time, everything was running an hour late! Never mind I thought, it couldn’t be helped we could have a cuppa while we waited. Once eventually called through, I became familiar with the procedure that was to take place over the next 3 weeks. I was scheduled for 15 sessions which took place on weekdays only and for some reason I’ve never fathomed, had to take place over 3 weekends. So this being Tuesday, I had 4 more sessions this week. Once in the department, you’re directed into a tiny changing room, to put on the gown they hope you’ve remembered to bring with you. This gown zips up the front and has velcro on the shoulder and arms to enable them to easily expose your required bits to radiotherapy. Once changed you  open the door and wait for someone to come and let you know they’re ready.

Linear accelerator
Linear accelerator radiotherapy machine

Once in the radiotherapy room, the fun really begins. There were several young male nurses and a couple of females who were tasked with getting me in the correct position and zapped. Clambering onto the bed was the easy bit, while being unzipped and exposed was a bit disconcerting – I’d normally expect to know a gentleman’s name before revealing myself – even if they’re not doing the un-zipping. However, I guess to them this is just a procedure, but I hope they’re a bit more sensitive to older ladies (says she who was probably old enough to be their mother, if not grandmother if we’re drifting into Jeremy Kyle territory). While I was just getting ready for the arm stirrup (I can think of no other way of describing it) everything came to a halt over my newly affixed dressing, following my line removal.

Breastboard
Breast board showing arm rests

‘We’ll need to remove that’ they said, ‘how long do you need to keep it on for’.

‘Well it’s only just gone on’ I said ‘I had the procedure done today as arranged with yourselves’

‘Mmm well we can replace the dressing, but we don’t use the same dressings’

‘That’s OK, as long as there’s something to cover it, I’m fine’

Or not, as it happened as when the dressing was removed, I’d had an allergic reaction to it and had a lovely red square emblazoned on my chest. This caused more consternation and required a specialist to be called for before we went any further. It appeared that they’d need to do a patch test with ‘their’ dressing before they’d be happy re-dressing the wound, which ideally needed dressing somehow. So dressings were found and a piece attached to the inside of my wrist with the hope that any reaction would have happened by the time my radiotherapy session was actually over. At this point I should say I wasn’t expecting any reaction as for some bizarre reason I’ve discovered, it appears that it’s only my chest that’s sensitive. I’ve never had an allergic reaction to plasters anywhere on my body in my life before. Cut fingers, scratched legs, blood samples via my arm – nada. But stick a bit of tape or plaster on my chest and it reacts. Well I say chest, I’ve only had to tape things to my right boob since the Hickman line went in, which seems to have thrown up this little anomaly.

So finally we get underway with the radiotherapy, with much pushing and shoving to get me in the required position, while someone stands near the laptop calling out measurements. In the meantime a nurse at either side is trying to match me up and then out comes the cold metal ruler while they add a few more scribbles to my back and chest. Note to self – don’t wear a decent or white bra in future as their red, green and black pen marks makes a right bloody mess when it rubs off. Finally, happy with my position, they all leave the room, while I’m scanned and zapped and hoping I don’t freeze to death before they all come back. All in all it takes about 5 minutes, it’s the struggle to get you into position that takes the time. And I was to discover on some days, it could take up to 3 attempts for the deed to be done during which time, you’re allowed to try to get the blood flowing back into arm before putting it back into its cup to keep it above your head.

So that was my first (dramatic) session over. The specialist came back to check my wrist and surprise, surprise no reaction so I was given new dressings to put on. However, before that I learned that the Medical Procedures Dept had been called to come and photograph my ‘reaction’. This involved wandering around various corridors to find a spare room to allow the photographer to do her thing. This was because the changing room in the radiotherapy department is not much bigger than a broom cupboard. Finally a room was found and I was positioned on a bed and asked to remove my top and lower my bra strap. I made some quip about this not being how I’d expected my first glamour shoot to be like. This fell flat with the photographer, though it raised a smile with the specialist! Not really sure why it was necessary to photograph the reaction to the plaster unless it was to ‘cover’ themselves in case I complained – but that was never going to happen. Anyway it rounded off an interesting afternoon and guaranteed everyone remembered who I was on my next visit.

The rest of my radiotherapy sessions were far more mundane and just involved turning up, waiting, being positioned, zapped and sent home. The only exception was the one occasion when the 2 nurses undertaking my radiotherapy appeared to be at loggerheads. The atmosphere between the two was almost sliceable and every co-ordinate was checked and queried as if each didn’t believe the other. Had one in particular been concentrating on what she was actually  doing rather than point scoring, she would have noticed she hadn’t highered the machine, before moving it around and trapping my arm in it. By the end of the session I was as rattled as they were. Thankfully, I was never dealt with (by design or accident) by the same pairing.

Throughout my sessions, I’d been lucky in not having any troublesome reactions. I’d been careful to start using cream on the area just before the treatment started and continued after. While I did start to go a little pink towards the later sessions, I’d had no blistering or burns to contend with. If I’m honest the hardest part of the process was travelling into Manchester every day for 3 weeks for a treatment which was over and done with in 15 mins (bar the delays for over-running or machine failure). In fact on one day we managed to get back down to the car park (which is free for the first 20 mins) and find we hadn’t been 20 minutes!!

The last session is of course a milestone and marks the end, of what to my mind, is the worst part of my treatment (although radiotherapy isn’t in itself hard, the travel and possible side effects can be draining). While I never got to ring the bell at the end of my chemotherapy, I was determined that this time I was definitely marking the occasion. So I’ll leave you with the momentous moment I got to ring the bell.

 

SV201331
Ringing the bell – 26th March 2018

 

 

49 comments

  1. Hey, beautiful Lady! We must be on the same wave length or mental telepathy. I was in my kitchen washing some dishes and thinking about you. It has been quite a while since you updated us about yourself, and I cam to my computer to send a PM on GR’s to ask how you were doing, and ouila, there was this post. I am so glad to see you rang the bell, too! Sending love, hugs, kisses and a host of Angels to watch over you!
    xoxo

    Liked by 1 person

    • I’m so much better than I was after my last post, that it’s real life and not illness that’s getting in my way of finding time to post! I really appreciate all the love and support I’ve had through this, and it’s good to be able to post a less distressing update. Many thanks for your love, hopefully those Angels can help someone else soon xx

      Like

  2. It’s SO nice to see the finishing line. You have been through so much, now you can begin to claim your life back. I don’t think anybody can understand how institutionalised you become when fitting into the hospital routine and the expectations they have. I did smile at beating the 20 minute car parking, it feels like a small victory when you consider how much they charge. I’m ‘lucky’ my radiotherapy table didn’t have all the extra arm extensions but the table is so hard and narrow, because I couldn’t move they used a new fangled stretcher that inflates like a hovercraft to move the patient from the bed to the table. That was the scary part for me!!
    Continued good health lovely lady, thanks for all your support for me when you have gone through crap yourself. Much love as always and big hugs xxxx

    Liked by 2 people

    • You cannot imagine how pleased I was to beat the 20 mins – I love a bargain LOL. The finishing line is indeed in sight as the worst is definitely over for me. The injections seem a doddle after Chemo (injection day tomorrow – ugh). Your support has been just as appreciated my be, I can assure you. Big hugs and continued love and support, I’m always here for you xx

      Liked by 1 person

  3. What a great lady you are, that I so admire Jill. To go through all this and bare all is so very brave. I am so looking forward to seeing you again real soon. Harrogate feels like it is just round the corner now, Take care special friend
    Sue xxxx

    Liked by 1 person

  4. I’m ringing along with you Jill and am so pleased to hear another milestone is achieved – though I think you should go for a more glam photo session next time with a different photographer! I love your realistic and pragmatic approach here. I think your honesty will be a support and inspiration to so many women and their families xxx

    Liked by 1 person

  5. Oh my word Jill! You are going through it.
    I hadn’t realised all this was still ongoing. Should have asked of course, but wrongly assumed/hoped with you going away on holiday that you were done with all the procedures

    So many of them it must be absolutely exhausting!

    You really are one brave lady!

    Caryl xx

    Liked by 1 person

  6. Thanks for the wonderful post Jill, as always – love the final picture, and so pleased you’ve retained that fantastic sense of humour through it all. Sending much love xx

    Liked by 1 person

  7. I’m so I’m incredibly proud of you, my beautiful, funny twitter friend… and so very chuffed that we share eyebrows-in-common from Amazon one click ordering! Unfortunately I have a permanently raised Roger Moore left one, so I think you’ve mastered the art of the plastic stencil better than I have…. or I could just blame it on the gin! 😉
    Sending hugs, love and laughter xx

    Liked by 1 person

  8. I had to laugh Jill when you talked about the disconcerting experience of undressing in front of these strangers. I had a similar experience with my radiotherapy which involved partially undressing the lower half in front of two young men. One thing you lose quickly during many medical procedures is your sense of dignity. 😅

    Liked by 1 person

  9. Jill
    What a terrific post which I think would be very helpful to anyone starting radiotherapy. You explain it so well yet, because of your (wonderful) humour, consideration and personal experience, you haven’t just de-mystified the processes you have eased the worry and fear which accompanies them.
    Congratulations on finishing your chemo and radiotherapy, what a relief! Very best wishes for your recovery over the coming months and good health going forward.

    Liked by 1 person

    • Thanks Janet. If it helps someone that’s great. It’s all been a steep and at times challenging learning curve for me. Of course we are all different and our experiences will be too, but there is a core of shared reality. These posts have helped me cope, so helping demystify the processes is a positive side effect ( a very rare thing ☺)

      Liked by 1 person

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