Scaring myself reading too much on the threads starting RT 27/1/25

Hi i know exactly how you feel although im seeing the dietitian on Monday then starting RT on Thursday. One thing I have learnt is that everyone is different. Different in the way their body reacts plus where their cancer was and what treatment they had. I’ve spoken to people who breezed through it and people who have struggled. Some have had one or two surgeries before treatment and found that harder than the following treatment. I felt overwhelmed and afraid on Monday when I had mask fitting and dental appointments. Feeling better now and preparing myself. Inbox me if you need to. 

Hi Lorr 0. If you have been told it is treatable and curable, believe them, they wouldn't say that, if they didn't think it. The CT scan will probably be for your mask fitting, so they can line it up for RT. Having a feeding tube fitted, is really good, which will help you through your treatment. There is no set time for recovery, we are all different, some take longer than others, you have to give yourself the time to heal, it can't be rushed. You will feel a lot better when you start your treatment and get into the daily routine. Try to stay off google, lots of the info on there is outdated at best. Stick with us, ask any questions you have, we are all here to help.

Ray.    

Lorr O said:

I’ve just read something on here that has sent me spiralling.

What? Do you mean increase in size of cancer from diagnosis to planning CT?

We will try to put your mind at rest

My MRI had my cancer at 18x15mm which is T1

By the time of my planning CT it was upgraded to T2 at 25mm  so some enlargement between diagnosis and treatment is inevitable. I'm sure all of us experience that but most aren't told exactly. Lets face it all the Ts have a 20mm range if you think about it so you might start out at 21mm and end up 29mm and still be T2 but not informed of any progression ...............sorry I'm rambling.

It's horrid.....you are bobbing along, well,  without a significant care in the world, and overnight you do become a cancer patient out of control of your life and on the NHS statistics database.

But Ray is right. This cancer is curable, it's just that the treatment is pants. 

We are all unique in our recovery too and the impetus of needing to be back in work often speeds it up a little so please don't be put off by other people's milestones. 

Lorr O said:

I have been told I’ll start to feel more myself  around weeks 16-20

I finished treatment on January 23rd 2019 and I was at The Malvern Three Counties Show in the same June. I managed to walk the four miles to and from our campsite, around the show all day and eat proper food there. I was knackered though.......

Hi Lorr

There is no doubt that the treatment is harsh for some and recovery is sometimes one step forward then two back but things do improve....I finished Chemoradio in June 2023 ....Oct/Nov 2023 I was in Tenerife , swimming and playing golf....there is a new normal for most of us, taste and appetite often take time to return, alcohol is a no-no for some, side effects of Chemoradio sometimes surface, swallowing exercises, dental care, lymphedema massage etc. ...recovery does take time but some are quicker than others.

Take care

Peter

Hi Lorr  O, my this exact time last year I bit my tongue and an ulcer appeared, well I thought it was an ulcer it turned out to be stage 1 cancer if the tongue. I was devastated, shocked and couldn't believe I had cancer as I am the healthiest eater don't smoke, drunk and do at least two exercise classes a day plus walk 8 Kms every day so I was so overwhelmed with this diagnosis. I had head neck dissection march with RT in may. I finished my treatment end of June. My goal was to go to a wedding in London two weeks after RT and I live in northern Ireland and I did go. It was hard but I did it. I danced all night. Couldn't eat the meal but I drank fortisip drinks during the day. During treatment and three weeks after operation I was back at my exercise classes I kept positive and went as much as I could until my mouth got too sore. I still walked every day though. My determination kept me going. Before RT started I made all my meals and liquidised them and drank them. Not great drinking a roast chicken dinner but I knew I needed the calories as I couldn't afford to loose weight. I put on 3kg during RT. My dietician said I was her first patient to ever gain weight during treatment but I was determined not to be taken into hospital. I'm now just over six months RT I did take water blisters after RT which were awful but not many people do so I seem to be unlucky in that one. I'm back full swing at every exercise class and I am eating everything except spicy food. I don't Google as it scares the life out of me . If I'm worried I come on here and ask for advice and that settles me. Everyone is different in their journey so just take one day at a time and try not to worry about what might not happen. Easier said than done as I'm a worrier too. I do my exercises three times a day faithfully for my neck and mouth and I'm hoping by June it will ease slightly. I have given myself a year and try not to be hard on myself with all this recovery as it's slow. Head and neck cancer is brutal and the only people who really understands are the patients themselves. I'm in a good place now and I'm only six half months past RT. Each month gets better. I had the water blisters up until end of November and I never thought they would go but they did . We are all scared going through this journey but it does get easier and um hoping this time next year it will be even better again. I have rambled in lol but what I'm saying is I never thought I would have had this cancer and now one year after biting my tongue I have come through so much but I'm in a good place today compared to even October. Take really good care of yourself and I'm sending you lots and lots of hugs and prayers for your upcoming treatment. Xxx

Hello Lorr O

Basically what everyone else has said.  The run up to treatment is frenetic and overwhelming.  It really does feel as if you are being attacked from all sides and are drowning in the processes.  In my case bits of unwelcome news sort of dripped out of the woodwork in what felt like an overwhelming conspiracy to keep things quiet in case I bailed.  I nearly did.  

Like you, my oncologist was always 100% positive that this was curable.  My tumour was. T1 at diagnosis.  I don’t know what it was at the time of surgery and to some extent it was academic.

I hadn’t, before treatment, found this forum. I wish I had .  There really is nothing like talking to people who have been there, done that, and are well on the way to washing the car with the T-shirt.  It’s the practical advice on the small things which, although perhaps clinically insignificant, make life easier…and the reassurance that what I was experiencing was normal (in the context of the treatment ) and nothing to get overly concerned about. Dr Google is not your friend!

Recovery is a slow process.  It’s not a journey one would choose to take…and, frankly, there just has to be a better, kinder way…but until it is discovered, it’s the best we have. As others have said, there’s no blueprint. We all react differently…and deal differently with the reaction.

I am a year downstream. Is life normal? Well…I guess I would say yes, pretty much in all the areas that matter.  I have some residual eating/swallowing issues…but it hasn’t stopped me eating out or doing anything else really.  In myself I feel absolutely fine, and have done for a long time.   I still get the odd issue, and I’m still picking up tips from this forum which have and continue to help me.  I (perhaps unwisely) went out to Cyprus for a couple of months just over 3 months after treatment - but I got away with it and I felt better for it.  This path may have been imposed on me…but I’m damned if I’m going to let it define me or dictate what I do to the nth degree.

 I completely get your heightened awareness of your body.  Things I might have ignored before I now get checked out.  And yes, sometimes I’ve felt a bit of an idiot when it has all turned out to be benign and nothing to worry about.  My GP surgery has been very good.

This is going to sound ridiculous….but I found that I settled once the whirlwind abated and treatment actually started.  The radiology teams were very supportive…and the general support framework at the hospital dealt with any issues and concerns immediately….and I mean on the spot .  Nothing was too much trouble.  I also slept a lot which helped!

Going to your planning CT on your own.  I didn’t. I found that having my husband there helped both of us.  He was in the room when the mask was fitted and the nurses could explain the process to him….and he got the chance to ask the questions he’d been mulling about.  It wasn’t a results day, but understanding the process helped him.

Sorry, I’ve rambled on.  I hope things soon settle for you. Good luck with your treatment.

Liz

Hi Lorr

Everyone that's  posted make really good points- this crew of folks are a wealth of information and support.  The most important thing is it IS CURABLE; Ray is right- they wouldn't say that if it weren't true!  The collective "everyone is different" is also totally true.  My brother told me early on Knowledge Is Power...Asking questions and being my own best advocate has really helped quell that out of control, overwhelmed feeling.  Throughout treatment and beyond I have a small framed artwork a dear friend gave me that says: One Day at a Time. Yes- cliche, but truly words to live by! Try to get outside and walk often throughout treatment.  It really helped me to stay focused on the positive and heal emotionally and physically. Talk to us, talk to your team, talk to the people you love  You got this!

Movin On said:

Throughout treatment and beyond I have a small framed artwork a dear friend gave me that says: One Day at a Time.

That’s so true. 
I had this on my phone 

Hi Lorr. Please don’t get into a whirl. Trust your team and the planning the planning takes time for a respason the accuracy  is paramount.
.Everyone reacts differently to treatment and recovery. There’s no one size fits all ,I was 61 when diagnosed am now 68 and hand on heart there’s nothing I can’t do now that’s I could do before. I’m not a new me I’m still me that was my biggest fear would I still be Hazel and I am still Hazel I’m just a tad kinder than I was if that makes sense oh and I can’t eat a chilli no big loss in the  scheme of things. 
 I gave my self things to aim for one being my husbands 60th birthday birthday 8 weeks after treatment finished I did get in the plane it wasn’t easy but we did it together. 

The period you’re in now is the worst bit the fear of the unknown the what ifs. Yiu are on the cancer merry go round but yet the rest if the world keeps on spinning round.  Here is  a safe space for you to rant rave cry ask questions please use it  

read my blog you’ll see in real time if you want to see homeI went through  I’m still here helping others  almost 7 years on 

please keep,off Google you’ll scare yourself unless you know what are where ro look  

hugs Hazel