Emotional roller coaster

I am with you on the emotional roller coaster, albeit my husband who has tonsil cancer. He finished his 6 weeks of chemoradiotherapy on Wednesday, and my emotional have gone crazy. 

my husband had a Rig fitted, which despite being uncomfortable for the initial few days has been a godsend as he is now unable to take anything other than water and tea orally. With the headshell fitting, the radiologists helped with relaxation exercises whilst fitting. 

Now treatment has finished, I feel more scared and lonely then I have throughout the treatment, and I fully acknowledge what I’m going through is nothing to what you or my husband has been / going through. 

Looking back at what I’ve written, I’m not sure if anything helps, but to know you are not alone is important. 

Hi Lindielou

T2N1M0 Tonsil cancer HPV16 plus finished chemoradio June 2023

We were all scared and quite lost when we were diagnosed and put on the treatment journey 

The claustrophobia during  mask fitting and putting it on for treatment can be eased by sedatives, music and having eye and mouth holes cut....for info..,..Radiotherapy masks | Macmillan Cancer Support

I had a PEG fitted.... quite straightforward and little pain during fitting.... spent a night in hospital then 5 days of moderate abdominal muscle pain well controlled by meds.

The treatment is very challenging but has a 90%+ success rate....

Plenty of sound advice and support from others who have been on the same journey.... keep the forum updated with your progress 

Peter 

Hi

Lonelystar

My wife was my rock during treatment and recovery.... the treatment issues were stressful for both of us... I made sure my wife had 'me time ' she needed it to escape the constant worrying....

Weekends are the time when little help is available... make sure you have plenty of meds...and helpline numbers

Peter 

Hi Lindielou, a warm welcome to our wonderful forum, also a group none of us wanted to join. Be assured you will get lots of support here. 
Getting that diagnosis turns your whole of everything upside down and seems completely unreal. It was being taken to the McMillan nurses room and being given my little green book all about head and neck cancer, that made it all hit home hard. 
I’m a foster carer to two beautiful girls with learning disabilities and my first thought was them..what on earth is going to happen to them. 
I’m a very practical, matter of fact person and I immediately got all my affairs in order for the ‘just in case’. With the support of everyone involved with my girls and my wonderful partner, family and friends, I carried on working throughout treatment and also afterwards, when symptoms got worse. 
I am 7 months post treatment chemo radiotherapy for T2N1M0 left tonsil and lymph node. I have ongoing issues but so grateful I’m still here and living a good life with my girls. They were/are my motivation to beat this. 
Please feel free to reach out any time. We are a very friendly group who are always here to help in any way we can. Keep us updated on how things are going. 
Take care & best wishes
Denise 

P.S I didn’t like my mask to start with, it was so tight. Having music being played on Smooth fm (not my choice, haha) really helped me to relax. 

Hi 

We all go through our different stages after diagnosis. 

That intense sadness and feeling of loss and bewilderment. Not being able to  concentrate, feeling sick and having no appetite, not being able to sleep. Resentment that the world goes on without us. Then there are the physical symptoms that we imagine.

I’m medically qualified though not a doctor and I knew exactly what I was in for but the fear was still there 

Luckily I had a really good team behind me. I trusted them to get me through even though at times I lost trust in myself. 
My husband held my hand, my heart and my fear throughout 

Lindielou said:

When I read this back it all seems abit silly, guess I'll get used to being an emotional wreck.

None of it is silly. You’ve taken a first step to getting your head round it all 

Stay with us. There’s always somebody here to talk to. 

So sorry to hear about your diagnosis Lindielou.  I was 57 when diagnosed with tonsil cancer and am also a primary school teacher.  As others have mentioned, the PEG was worth its weight in gold.  You do get used to it pretty quickly.  The way I looked at the mask was as if it were a security blanket to keep my head in place to help me stay still. The radiologists are really supportive.  You will be in good hands. This forum is not just a great place for information but also a real supportive network.  Wishing you well.  

Hi welcome from me I’m Hazel,approaching 7;years post chemo radiotherapy for tonsil cancer. What yiure going through is perfectly normal we’ve all been there it’s the fear of the unknown will I still be me will I get through this will my family. Yiuve found us in here were a tight knit bunch always happy to help. 
Once you get your  treatment plan things  tend to settle down you've a plan and take it one day at a time trust your team never be afraid to ask for help. We’ve all been there and happy to answer any questions. 

Hazel x

Hi I totally understand how you feel. I still can't get my head around all what happened to me. It was like a bad dream . In the early days of diagnosis I just went on auto pilot. I'm a very practical person so I just carried on with every day tasks as best I could to keep busy. I set myself a goal for end of RT to go to a wedding in London . I live in northern Ireland. It was two weeks after my RT finished. My oncologist looked at me as if I was crazy . But I did go. I drank 5 fortisips that day as I couldn't eat. But I had a great day. Just take one day at a time. As regards to the mask. I was overwhelmed with it the first day but they played mama Mia songs . My treatment was over after two and half songs and that got me through. It is tough but I'm nearly eight months post RT now and in a much better place and I am so grateful for finding my tumour so early. It saved my life. Stay positive and be kind to yourself xxx

Lindielou

A warm Welcome to the group x

Sadly you are in the horrible place of fear of the unknown where a torrid of emotions seems to mix with high levels of Anxiety. For many of us this all seems to subside once treatment begins.

Im so sorry that you have to go through this but like Peter said the HPV related Head and Neck cancers have over 90% cure rate. It is a tough treatment ,not one any of us would want to go through again but doable. 

I was like you petrified , angry very emotional and didn’t think I would get through my mask fitting CT/MRIs never mind the chemo or radiotherapy as I am also claustraphobic.Everyone is different but I found the mask fitting ok like having warm flannels put on my face then dried super quickly I asked for eyes and mouth to be cut out. I still take diazepam for all scans.

I couldn’t imagine how I would cope with the radiotherapy but I made a great playlist and planned a worldwide trip some days or thought about my favourite holidays / memories from my life to keep me focused .

Th steam will do their very best to help you with your claustrophobia and do everything possible to help you relax . Speak with them about this before you start . 

Most of us who have feeding tubes( PIGG/PEG/RIG or Nasal Tube) feel that they were a life saver,  was so against having it and was very uncomfortable first week and took a further week to settle but ,I’ve just had it removed after 15mths( I am not the norm!) had a good cry as I was so thankful to that little piece of plastic.

Never a daft question always someone willing to listen and share their own knowledge and experience x

Debbie

T4Nb2M0 HPV+