Putting the Rad in Radiation

 

Yesterday I finished my course of 24 radiotherapy treatments. Today I begin my course of 9 proton treatments.

I cannot believe that I have already been having treatment for nearly five weeks – that I have been here for nearly seven weeks – and if I’m honest, I’m beginning to wish I could slow down time because I feel so totally safe here. It seems to have rushed by in the blink of an eye and it really does feel as though I have been in some sort of time warp that has madly sped time up.

radio table diagonal

Me on the radiotherapy machine in optimum napping position, looking incredibly tanned thanks to the flattering lighting.

I have been planning for weeks, as soon as I had my first radiotherapy treatment in fact, to do a post on my experiences of radiotherapy. However I am horrendous at actually getting things done and as I found more and more ways to blab on about myself in various different posts, this entry repeatedly got put on the later base. I will be blaming this on the pain killers and sarcoma; my mum is not buying it as she says I have always been this way (hopelessly forgetful), but as I say to her: the sarcoma party is an exclusive VIP party and she doesn’t know the struggles we face! (This is best said with a sincere look of long-suffering and glassy eyes that gaze out into space, with a hand on the heart – I’m allowed a little drama, I have sarcoma… I don’t know if I mentioned that.)

 

radio table front

A really arty shot of me on the radiotherapy table. Look at the lines, look at the symmetry, look at the lighting. It’s so edgy.

So anyway, in this post I hope to shed a little light on radiotherapy and dispel any myths you may have heard about the treatment. Because, for me anyway, radiotherapy has been a total doddle. I know this may not be the same for a lot of other patients because compared to a lot of people here at the centre, I am having a massively easy time of it. I only need to have one treatment a day (compared to others who are having it twice a day), I am not having chemo alongside it and, because of the location of my tumour, I am avoiding some of the nasty side effects that others who had/have brain tumours are experiencing, such as mood changes.

I was warned that I may get sickness and that redness of the skin would develop around the treatment site – redness which will later develop into burns and possibly blister. So far I have had no redness or soreness at all, which is great for me. My doctor ominously tells me that I will get this soreness any day now, but I am willing my skin to prove him wrong. With respect to the sickness – I don’t think I’m getting this at all. I vommed out of the car window today on the way home which wasn’t pleasant at all, but I think that was less to do with the radiation and more to do with the fact I hadn’t eaten anything all day, but had taken lots of strong painkillers (including opioids). I’m hoping that anyway, because I’d much rather keep that as a one off. I was also told that I would likely become more and more tired as the treatments went on; I think that maybe I am beginning to feel this. It’s just a feeling of lethargy in my bones that I get every few days, and when I get that feeling I will not move for anyone or anything… except maybe for chocolate and the TV remote.

booties final

Me in my fabulously chic booties, courtesy of the lovely Jo. They kept my feet beautifully warm throughout my radiotherapy sessions.

The radiotherapy itself is easy breezy. My radiographers are just the loveliest people, and I will really miss them now I don’t have my daily treatments. They have made me little booties so my feet didn’t get cold, cooked me at least 10,000 calories worth of biscotti and bought me a big bottle of root beer so I could sample some for the first time. They made me feel relaxed at all times, which was no mean feat considering how anxious and scared I was at first about pooping myself on the radiotherapy table. I don’t know how a group of people made me feel okay about doing that, but they did. And I am so thankful for that. And good news too: I didn’t poo on the table at all! Which is, I would imagine, the greatest present I could have given to my radiographers. I am also unbelievably grateful to them for turning what was five and a half weeks of treatment into what felt like five and a half weeks of catching up with friends. And now we are all official Facebook friends so at least one good thing has come of this: I can increase the Tumour Has It Facebook page likes by three – thank you UF Proton!

Back in July when I came first for proton therapy, before I was sent home for the correct operation, I got five tiny dots tattooed around my abdomen and hips so that they could line me up with the machine each day. I also got a body bag (much less horrific than it sounds) moulded around me as I lay on my back, which was used to make me lie straight in each session. Using these tattoos, some little stickers and this body bag, I was each day positioned into place and then I would lay on my back for about twenty minutes whilst the machine blasted me with radiation. You can’t feel anything and I would just fall asleep each day, gently drifting off to the soothing sounds of the radiotherapy machine and Christmas FM.

Today I will be having my first proton therapy treatment. I am hoping I will be able to spark some sort of bitter rivalry between the proton and radiotherapy sides, by casually slipping into conversation topics such as how many cookies the radiotherapy side made me. If I have not received a full size chocolate cake by the time my treatment is over, I will have failed. I am not worried at all about starting proton; I have been put so at ease by all the staff at the centre, I have total confidence that I will get on with my new radiographers and that they will continue to support me through to my final treatment.

So that’s pretty much all there is to know about my experiences of radiotherapy. It is beautifully unexciting, which is actually a fantastic thing for me to be able to say. So much of my diagnosis and treatment has been crisis ridden and fraught with worry, stress and set backs. I had to fight for what felt like forever for answers and a diagnosis; I had to be sent back for a second surgery the last time we came here; I was required to go through extensive spinal surgery that still haunts and terrifies me. So the fact I have nothing particularly crazy to report back on about radiotherapy feels amazing to me and I couldn’t be happier about it. So although this may not be the most exciting or interesting post for you to read, please take from this that that is because I am totally content in how this stage of my treatment is going. And that is why I am loving it here.

radiographers

Me and my radiographers. There is (from left to right): Jo, me, Rick and Hannah. They are just fab and the best radiographers in the whole wide world (this is nothing to do with the presents they have got me)

About the Author

tumourhasit@gmail.com

19 Comments

allison semikin

You did indeed take this stage of treatment in your stride. Jo, Hannah or Tina as we called her for the first few weeks and Rick go beyond what is expected from therapists of any description. I want to thank you guys from the bottom of my heart for all the kindness you showed Beth and the way in which you go about your work with such compassion is astonishing to see. Beth once again your strength of character is astounding and you had so many worries before this started yet you have risen magnificently to the challenge once again. Love you to the moon and back xxxxxx

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Wendy Bamping

Great blog Beth (again) and fab pictures I especially like the one of your cosy toes in red socks and the last one of your radiographers, you look like a little family and really happy in that pic. Also, happy to hear from Mum that your walking has improved so much. So lovely girl go and kick ass at the Proton sessions if anyone can you can!! Tons of love and good wishes as always xxxxxxxxxx

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Sue Cunningham

Lovely to read your latest blog Beth and to know that your radiotherapy treatment has been ‘uneventful’ compared with all the traumatic events you’ve had to deal with over the past year! Hope it continues that way. Take care sweetie 😊 love and hugs xxx

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Jayne

That is good news Beth and you are looking beautiful. All the best for the proton treatment which will make you feel the same way as you did about the radiation treatment. Take care and lots of love to you all xxx

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Bernie Redmond

Hi Beth I am delighted you are finished your RT – the best of luck with your proton treatment. I was also told last year that I might get rash etc., after the treatment and thankfully nothing. I was told to use non-perfumed soap and E45 cream to moisturise but I assume you have been told that also. My friend Owen (age 19 and good looking) who I mentioned to you before is in great form TG. I met his Mum in town and she confirmed that it was sarcoma he had on his leg but thankfully after a lot of treatment he is fighting fit as you will soon be too. We wish you and your family joy and of course, most importantly, good health for 2016. Love Terry/Bernie and Lucy XXX

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Stephanie Robinson

Lovely booties – are they Arsenal or Liverpool colours?? They’re certainly not Crystal Palace 😉 Hope the next stage of treatment also comes with biscotti and root beer x

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tumourhasit@gmail.com

Hi Stephanie! Thanks for the message 🙂 Urrggghhh I will have to say neither Arsenal nor Liverpool! I am a firm believer in the colours of the candy cane over the colours of a football team! Candy canes never lose and they cost pennies each rather than tens of millions of pounds…I rest my case!! I also hope it comes with biscotti and root beer, I am keeping my fingers crossed x

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Marilyn Fletcher

Looking forward to the TV clip. Lovely post and looking. Forward to the next update already. Xx

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tumourhasit@gmail.com

Thanks Marilyn for the message and continuing to follow my blog. Hope you enjoyed the TV clip and it didn’t disappoint! xx

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Anne Jepson

well done, Beth xxx sending you lots of love and support from dear old Blighty.

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Barbara

I just wanted to wish you all the best! So good to see you’re content with your actual situation! And wow, you’re such a strong girl, very impressive! I wish you all the best!! A big hug from Switzerland, Barbara

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tumourhasit@gmail.com

Hi Barbara, thank you for your comment! 🙂 I can’t believe my blog has made it all the way to Switzerland – wow! I really appreciate your good wishes, thank you for your continued support xxx

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Naomi

What brilliant news Beth! Thrilled to hear this stage is going so well. Big boots to fill Proton staff, get baking!! 😆 Hope this next stage is as seamless as this Beth. Love Naomi xx

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tumourhasit@gmail.com

Hey Naomi! Hope Australia is going well for you and that you are enjoying the hot weather! It is indeed big boots for them to fill, and I am ready and willing to accept and eat baked goods! Lots of love to you all xx

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Karin

Such a funny girl 🙂 I know it is a tragedy you have to go through , but you made us laugh. Wish you a lot of luck, patience (probably the most difficult ….) and a lot of fun and love. If anyone beats this illness: its you.
All the best from rainy Switzerland
Karin

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tumourhasit@gmail.com

Thank you so much Karin for your message. It’s so lovely to hear from you; I am so pleased my blog has reached you, all the way to Switzerland – wow!! And I also want to say a massive thank you to you for your donation. It was so kind of you, and I really am just blown away by your generosity. So thank you, because it really does mean a lot xx

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Jackie Owen

Another amazing blog Beth! So pleased to hear how well you are doing and how brave you are. You look fantastic in your latest photo and hope you are beginning to feel better too.
All the best for the rest of your treatment.
Lots of love Jackie xx

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tumourhasit@gmail.com

Hi Jackie! Thanks for the comment – You are too kind! I’m definitely recovering well now. I’m finding the proton relatively easy and I’m having minimal side effects. Some days I find the fatigue hard but generally, I am much better! Hope to see you when we get back! 😊 lots of love xxxx

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