Fifty Shades of SRS Radiotherapy

Quote of the day:

  • Nothing in life is to be feared it is only to be understood. Now is the time to understand more, so that we fear less – Marie Curie
  • I hope you know how brave you’ve been – Charlie Mackery

November 2021

It was early November 2021. I had returned home from hospital and was slowly recovering from the surgery in that my head wound was healing. The MRI scan showed that the operation had been successful and the Neurosurgeon had done the amazing job of completely removing all of the tumour. It was confirmed that the tumour was Melanoma. This was always suspected but never confirmed until the actual tumour was removed. There is the chance that now the Melanoma has Metasized (spread to other areas of the body, for the second time) it can return in the body, neck  and previous areas. For now, though thankfully my CT neck and body scans have been clear and there is no point focusing on what may or may not happen. I need to save my energy on the present and what is known now. Now there was the not so simple task of dealing with the two smaller brain tumours that couldn’t be operated on.

Thankfully I was offered the chance of SRS radiotherapy (Stereotactic Radiosurgery). This is a non-surgical radiation therapy used to treat functional abnormalities and small tumours of the brain. It is more precise and requires fewer high dose treatments than traditional radiotherapy. Amazingly and luckily for me it just so happens Preston Hospital have one of these machines.

The plan was to have up to 3 doses. I had to wait until my head wound had healed and being the Neurosurgeon did another amazing job of cutting and shaving a minimal area you could hardly tell I had, had brain surgery. Before I was discharged from hospital, I had asked the nurses to remove the staples as didn’t fancy a return visit or a visit to my local treatment room. To this day I don’t really know what my wound looked like or how many staples there were until it had healed because a) my hair was totally matted and b) you try looking at the side of your head when you can’t move your neck it’s not that easy. (It’s a bit like one of those tasks where you get kids to try and lick their elbows just for 10 minutes peace, if you haven’t yet done that you can thank me later). All I do know is that the removal of the staples was a two-person job combined with a lot of heavy breathing and clinking. When I could finally wash and dry my hair albeit sat over the bath with Ste acting as a very shit and rough hairdresser. I could quite easily hide my scar (I knew my frizzy hair would eventually come in handy one day, it’s only took 41 years but it finally came up trumps in the end).

SRS treatment to the head and neck requires wearing a specially fitted thermoplastic mask. I had to go for an appointment to get this made as it needs to be to the mould and shape of your face so there is no movement. This is totally pain free in fact it’s warm and feels a bit like having a facial although it’s a long time since I’ve had one of those. If I had to explain what the SRS mask looks like the nearest thing, I can think of is the green Joseph and Joseph sieve we have at home with small holes in. You know the type of thing you purchase because you think you’re being posh and this utensil will make a huge difference to your culinary abilities. Then a few months later you realise it was definitely an impulse buy and has made no difference to your culinary abilities, added to the fact you can’t actually afford any of the matching items so it sits there looking slightly out of place amongst your range of basic cooking utensils you’ve acquired over the years.

Just breathe

It was the SRS appointment day Ste drove me to the hospital and we had to sit and wait for a while. When we did get seen I was told I was going to have just 2 intense 20-minute sessions but it would all be done in that day and would that be ok. It meant I wouldn’t have to come back for another session so I agreed to it.

I went into the room which did feel cold. I was told that they needed to scan my brain to make sure they get the exact location and I had to remain completely still. This bit is the long part along with the fitting of the mask. The actual SRS radiotherapy beam is the 20 minutes.

The radiographer got the mask she said it would be particularly tight but would warm up. It was clamped in place so that you couldn’t move your head at all which I suppose you can understand as it needs to be so precise. I was expecting it to feel tight but I wasn’t expecting what was about to come next. The radiographer who was talking to me all this time clamped the mask in place. It felt awful you literally couldn’t move your jaw to even speak. There were several adjustments and I have to say not one felt comfortable. To add to the irony of situation I swear Will Youngs ‘Jealousy’ song was playing in the room which has some lyrics about not being able to breathe much to my annoyance (more because it’s a pretty crap song especially in that situation – sorry Wil I did vote for you in pop idol though so I’ve only myself to blame).

After several attempts it didn’t seem any more comfortable. I do like to think I have a pretty high pain threshold after all the crap I have been through over the past few years however on this occasion I’m not ashamed to admit it I was struggling. I think what added to the pain and discomfort was that I had a particularly sore neck strain from the brain surgery.

It came to a point where the radiographer just said we’ll just have to go ahead and if you need to stop just say and we can. So, the mask was fully clamped in place and the radiographers went out of the room. They then scanned my head to pin point the exact place the radiotherapy was to be targeted. I don’t know how long this took but it did feel like a long time.

Next was the SRS radiotherapy beam. The radiographer said just say if you need to stop but it was to be 20 minutes and then if I felt ok, I could have the next session straight after. I lay there and to be honest the actual beam is totally pain free. For me it was the mask for me that was really uncomfortable and hurt.

Fifty Shades of SRS Therapy

I lay there and tried to do what I do in most stressful situations close my eyes and meditate. I managed to get through the first session and the radiographer ask me if I wanted to carry straight on. The answer to this was a definite ‘NO’ well it would have been if I could have actually moved my jaw to speak that’s how tight the mask was. I can’t say I’ve ever worn one (honestly!) but I can imagine it being some what similar to wearing a gimp mask and being unable to say the ‘safe word’.

I must have moved my hand or something as the radiographer came in took the mask off so I could have a break. I got a bit overwhelmed and upset at this point. To be honest I felt like I was being a bit soft and not sure I could go through it again, so I asked if I could go to the toilet. I walked past Ste who was quite happily sat there scrolling on his phone oblivious to all of this. On a scale of 1 to 10 I think his emotional sensitivity level is probably -10 on a good day but to be honest I think this has proved quite beneficial in my case.

I went to the toilet a looked in the mirror my nose was red and sore and I had a spot on my chin that was now a nice red square. I sat on the toilet and was glad of the break. I think at this point I thought to myself I need to get a grip so I literally pulled my big girl knickers on (apple catchers) and walked back to the room ready for round two.

I’m not sure if it was a combination whether the radiographer may have fitted the mask slightly different or I composed myself better, or the mask had warmed up but the second session felt miles better I could actually breathe and move my lips slightly. At the end of the session was glad it was complete. It was then I was led on the table and moved my head to the left. At that point I noticed all the masks there. There must have been maybe 30 at a guess. I thought to myself each one of them is a person who has to have SRS radiotherapy. If they can all go through that then I should be able to go through it. In fact, some people would jump at the opportunity to have this treatment so to go through any pain and discomfort for a couple for hours is nothing in comparison to what others go through and I would do it again if I need to.

Lessons Learned

  1. Posh utensils and kitchen gadgets aren’t always a good buy especially if you can’t afford the rest of it.
  2. When things become overwhelming sometimes you just need to pull up your big girl knickers
  3. Should the opportunity arise I don’t think I’d be cut out for S&M

13 Comments

  1. Lindsey
    03/05/2022 / 23:13

    Your just amazing .. ❤️

  2. Nat
    04/05/2022 / 01:28

    You’ve been through so many tough battles Rach. More than many of us can possibly contemplate. Your posts seriously put life into perspective. I’m gonna stop complaining about my long days, or how tired I am. Because seriously, I’ve got nothing on you, and you still smile and make light of it. What an inspiration you are 💪. Sending you love. Get on fighting!

    • Rachel
      Author
      04/05/2022 / 19:33

      Awh thanks Nat we all have pretty rubbish days so you’re allowed to have a moan every now and then.

  3. Tracey
    04/05/2022 / 06:49

    Rachel you are truly an inspiration sending you all my ❤️

  4. Jan
    04/05/2022 / 06:59

    Another brilliant blog Rachel. My mum had SRS at Preston. She hated the mask. They offered it to her after the treatment as a souvenir. I think someone mentioned she could use it as a fruit bowl! She politely declined 😂xx

    • Rachel
      Author
      04/05/2022 / 19:35

      Ha ha I mean I’ll upcycle most things but I would definitely draw the line at the mask x

  5. Jenna
    04/05/2022 / 08:12

    Such an amazing lady…. you are inspirational and just have a heart of gold… your blogs are amazing Rachel… well done for well everything xx

    • Rachel
      Author
      04/05/2022 / 19:38

      Thanks alot Jenna x

  6. Jeanette Pilling
    04/05/2022 / 08:40

    You always completely astound me… Love your honest approach… But also the humour… So well written…. So very proud of you for so many reasons… Keep at it xxxx

    • Rachel
      Author
      04/05/2022 / 19:39

      Thanks Jeanette x

  7. Gemma B
    04/05/2022 / 08:59

    You are amazing Rach, always looking to the positives! Thinking of you hun & sending love xxx

  8. Megan
    04/05/2022 / 19:06

    Love your blog Rach especially the lessons learned 😂 you should change careers and become a writer.
    Carry on being the amazing, strong, positive, beautiful lady that you are! ❤

    • Rachel
      Author
      04/05/2022 / 19:37

      Thanks Megan x

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