Radiotherapy – Page 3 – Dr Bexl Revamp

So, here we are, 3.5 weeks after chemotherapy finished, and it’s time for the last hospital-based treatment in the plan (still got hormone treatments to come for 10 years), radiotherapy!

What is radiotherapy?

If you like to watch a video, Macmillan gently explain what it is, and the process that is followed, plus the side effects (most manageable by medication, or knowledge that about what is to happen) – short and long term:

or Breast Cancer Care explains it well.

Pre-Radiotherapy

Last week I had 2 planning scans for radiotherapy, and was given the first 5 dates of treatment (out of 15), to start today. I was offered a range of times to start today, and had chosen a later time, because I wanted to pop into work again – so just before 5pm I arrive at the hospital (really dehydrated despite quite a lot of water, must check that)… I see Dr Chittalia in the distance and wave… and head off to the radiotherapy department.

I checked in with reception (I’d forgotten the letter with all the dates/times on it – doh!), and was told they were running pretty-much to time, go and take a seat in Suite 4, where of course I checked in on Instagram *rocking the 1990s boy band ‘curtains’ look, you know:

Ready for #radiotherapy. Final phase of ‘active treatment’ for #breastcancer other than hormone therapy for 10 years! Just hoping and praying this is the only experience of cancer but who knows …

A post shared by Bex Lewis (@drbexl) on Apr 25, 2018 at 9:05am PDT

Called In

I was called in pretty swiftly to Suite 4 (behind a pass-only door), introduced to Emma who explained what would happen in the process – what they would be doing, what the machine would be doing (with green laser lights lining up with tattoos), what I should be doing (largely lying as still as possible please and let them move me around), did I have any questions, etc.

Checks happened of course – which side was it, name, date of birth, address, ‘are you pregnant’, etc … and yes, do slop Aveeno on 3 x day + ask for Hydrocortisone if the skin starts to crack, etc. but side effects don’t really tend to kick in for a week.

I was then instructed to get changed into the radiotherapy gown (which I’d been lent last week) (easy-zip up front, and velcro shoulders so they can expose the working areas, whilst retaining most of your dignity!):

The next photo, also a strange one to take, but was quite impressed with the proper doors to the changing room, rather than papery curtains!

And there I was – ready to go (and you’re not going to get this made-up face every day … that was a work effort!):

Into the Treatment Room

I was then called by Hannah into the treatment room (and she checked what I wanted to be known as!), and asked to get up onto the bench! I did try without a step, but it was rather like trying to get out of the swimming pool with a dodgy arm so…

Once up, I recognised the layout from the planning scan, although obviously the machine itself is a new one! Backside into the gap, feet onto the footrest, wedge under the knees, arm in the red arm holders, as before.

The radiographers then proceeded to move me around (it’s really hard not to try and help by moving!), calling various numbers – ‘I’ve got 10.9’, ‘8.75 from there’ and so on. I have no idea, and that’s fine – it makes sense to them! Marks were drawn on the skin again, and an extra measure level was placed on the ‘to be scanned’ area to double-check that it was receiving the right amount of radiation. The machine moves around as they line various things up (can see one in action in this video from Addenbrookes Hospital).

The radiographers, when they think they are happy with the placement, disappear out of the room so the radiotherapy beams can begin. I had been warned that I wouldn’t feel anything whilst the machine was in action, and just to lie as still as possible. I have not had to had my arm bent up in that position for that since surgery, so that was uncomfortable, but otherwise – the lights are down in the room, the air conditioner is humming, and feel a bit dozy!

Then What Happened

The radiologists came back into the room and said they hadn’t got it yet, as the placement wasn’t quite right (I’d been warned that this could happen), I then moved my arm – and that meant the lining up had to happen all over again. Another member of staff then came in, and calmly got me to sit up (they are all SUPER CALM), and start the placement again – the machine then whirred around again whilst they re-lined it, and they disappeared out of the room again. I’d been warned the treatment would be about 6-7 minutes (long time to lie verrrrrrrry still), so when they came back in what felt very soon afterwards that didn’t seem to be a good sign!

We then had another staff member come in, and once you’re up to two extra, you know it’s not going well! I can’t even remember if they tried to scan again then, but then they came back in and said that they weren’t able to complete the treatment today as the scan-plan was no longer correct. This apparently is not that unusual, but as they need to be super-precise, and because the Dr would already have gone home, I’ll need to wait until tomorrow to chat to the Dr, probably be re-scanned and then hopefully start tomorrow. Delays the end-date by a day, so hopefully that will all happen. It was explained that quite often when the scan plan is taken people are really tense, and then as you start to relax, everything’s in a different position and no longer works. *They were very quick to emphasise that it was not that anything had been spotted on the scan that was worrying!

So, I then went to visit a lovely new friend (who I’d met through YBCN) for tea, now about to tuck self under the duvet (I’ve been writing steadily for about 5 days + new kitchen is coming on well so I need zzz) – see if I can stay awake to catch up on a bit of Netflix, otherwise I’ll just appreciate the sleep! And here’s hoping that tomorrow it all goes to plan – 1pm – I’ll be back there!

I was originally told I was unlikely to need radiotherapy, although they said occasionally things change as treatment goes on. When the pathology results came back, however, the tumour was clearly larger than expected, and had spread into more lymph nodes than anticipated (it sounds like more than 3-4 triggers radiotherapy, and I had 5), and therefore this was to be added to the treatment plan too.

Preparing for Radiotherapy

Today’s appointment was to prepare for radiotherapy, to ensure that all measurements have been taken, so that when I come in for treatment, everything is set up and the treatments can be fairly swift. I was told to expect to be there around 90 minutes, although the first thing I was told as I was sat down was that the room I was going into was running 30 minutes late (I’ve got use to having things to do on my phone or reading a book, so, no big deal).

Time for #radiotherapy planning .. nice cheery chairs!

A post shared by Bex Lewis (@drbexl) on Apr 17, 2018 at 6:02am PDT

A lot of people say radiotherapy is a walk in the park compared to radiotherapy, some say that people who have been fine with chemotherapy struggle with radiotherapy – as always with this disease, it’s wait and see how it affects you! The one thing that everyone is agreed on is that radiotherapy increases fatigue (which is already there from surgery/chemotherapy), and typically takes around 8 weeks to get back to normal (if you’re not one of the unfortunate ones that doesn’t really get over the fatigue – again – have to wait and see!). Here’s the link to the Christie’s information on radiotherapy.

Chat with the Oncologist

Shortly after, I was called in to see Dr Chittalia – another very efficient appointment, to check I was at the expected level of health post chemotherapy, and asked if I had yet started taking the Tamoxifen? No, I hadn’t because the GP yesterday said the letter just said ‘mid-April’, and as I was seeing people at the Christie today to check and see … so I guess that answers that, and I’ll start tonight! There’s differing accounts of whether it’s better to take at night or first thing in the morning (again, down to the individual) but whichever, after a bit of experimentation – stick with it… but hurrah – possible side-effects = menopausal hot flushes and insomnia, fluid retention/weight gain, bone thinning, and more indigestion – whoopee – maybe I should have ordered a larger bottle of Gaviscon (aniseed flavour please)!!

Dr C confirmed that the radiotherapy would be to the mastectomy scar area and the lymph nodes in my neck, warned of side effects (tiredness mostly, but also increased risk of lymphedema to the arm), told that Aveeno and hydrocortisone cream between them should help manage the damage to the skin. I then had to sign the consent form for treatment, before heading back out into the waiting room!

Scanning for a Plan

Not long after that, I was called into the scan room and yes, it was really cold – so thanks to those who warned me to have trackie bottoms and warm socks on. Other warnings were not to wear your favourite white bra, and some wet wipes (forgot those) to wipe off the ink marks that get drawn on your skin as they measure everything up. Standard questions re name, date of birth, address, not pregnant, then it was explained what is being done, and to yell if not comfortable, as will need to keep the same shape/place for the 15 treatments that are coming.

Then sent behind the – erm – not particularly privacy giving – paper curtains to put on the top (which will keep throughout treatment so is no cross-contamination between robes, and leave behind at the last treatment):

I was then instructed to get onto the following contraption (a 3D CT scanner):

Bum goes at the base of the slope behind that little lip, black wedge is for your knees to go on, feet need to be wedged up against the foot rest. Neck goes into the headrest, arm to be treated is placed above your head in the red arm rest (the other side is removed whilst your scan is underway).

I was asked to shift a little bit this way, that way, the other way, whilst various people came and went, drew things on me, stuck things on me, a green laser on the ceiling pointed at me, and they mostly discussed what they were doing with each other whilst my job was to lie as still as possible (ALWAYS at that point that your nose itches, etc. isn’t it!) and keep my other hand wedged into the waitsband of my trousers so it was out the way.

When they were happy that they had me in the right position, they wrote down a load of positioning numbers, then the table slid back into the scanner (thankfully a polo-type one so not as claustrophobic as an MRI scanner). Keep still, keep still, ignore the itches, mostly close eyes – but I wanted to see what was going on (remember NOT TO MOVE MY HEAD!)…. As the machine got ready – whereas the normal CT scanner sounds like a washing machine in cycle, this sounded more like a jet engine waiting to take off! Whole load of green lights spinning around the black track area, few movements back/forth of the table, and then the team came back into the room….

Tattoo Time

The sticker marks were picked off, and then three tattoos were inked onto the skin (who knows if these will be the only tattoos that I ever have?!):

These marks help your radiation therapist accurately aim the radiation at your treatment area. You may be having five days or six weeks of radiation, and every treatment should be aimed at the same place in order to prevent recurrence and to spare healthy tissue.

The reason for the tattooing is a bit like using a bulls-eye target for archery, darts, or rifle practice. Having a clear target area to aim at improves results. Verywell.com.

And I think this is one of mine (it’ll be easier to see once the pen is scraped off) – as they say, they look like freckles *The scar line is from the extra surgery I had in January):

Then time to get dressed, and head home.

#Take2

I’d walked back to my car and was 3/4 of the way home, when I pulled over to take a call. I was asked to come back and have a re-scan done, as my arm was not high enough – this could be down to lack of movement, but they wanted another try, as otherwise the radiation will hit my arm rather than my neck – doesn’t sound ideal.

I headed back in, Dr C happened to be there and was apologetic, but said we need to get it right! About 20 mins later, I got called in and went through the same process again, a little faster as had done the talk, the robe and the tattoos. Arm was pushed a little further, asked to wriggle a few places, a test scan was taken, more wiggles, and a couple of minutes later (I think), it was all done – and I headed home again!

Take 2 #radiotherapy scanning done. Had to stretch my arm another 2-3cm #breastcancer

A post shared by Bex Lewis (@drbexl) on Apr 17, 2018 at 8:53am PDT

What Next?

The first treatment date is Weds 25th April, and will finish on Tuesday 15th May (although sometimes people get booster sessions, but I think these are usually known about pre-treatment). I’ve got the first 5 dates in the diary (obviously not early mornings), and they’ll add a new date on at each appointment… I’ll start the medication this evening, and then we’ll see!

Planning another part-day into work tomorrow, whilst some work is being done on my house, and new kitchen is being fitted next week 🙂 Planning for that has been something great to do whilst off sick!

P.S. Port Removal

Last week I had my port removed, and today was allowed to remove the waterproof dressing (which makes me itch like mad), and the stitches should have dissolved:

Port removal dressing had been driving me mad. Allowed to remove today as stitches should have dissolved = pretty neat, huh? #cancerlife #chemotherapy officially done then!

A post shared by Bex Lewis (@drbexl) on Apr 17, 2018 at 3:10am PDT