Head and neck cancer

Hi Oberon. Do you have staging yet and what treatment have you prescribed? Try not to worry about spread. This cancer Whike being aggressive doesn’t normally spread past lymph nodes in the neck. 
From the results of my biopsy to treatment beginning I had to wait six weeks and I am here fit and well seven years later 

Have a look at this thread which has some helpful tips for you 

https://community.macmillan.org.uk/cancer_types/head-neck-cancer-forum/f/diagnosis-and-treatment/287136/helpful-tips-for-those-about-to-start-treatment

Thanks Beesuit

comforting

Most of us have had a few weeks to wait... worrying... but the treatment mops up the cancer...eat all the things you like before your taste and appetite go off on leave... and try to keep occupied.

Hi Oberon

It’s really positive you’ve found this forum where others share their experiences, their strength, fears and hope…

My diagnosis was T2 N1 M0 - p16 positive, HPV negative - Tonsil Cancer 30 radio 5 chemo - not suitable for surgery because the tumour was too close to my jawline. I finished treatment on 310724 and am doing well so far. One Day at a Time. I also had a feeding tube inserted in my tummy prior to treatment. I got used to it reasonably quickly and started using it for liquid feeds from about week three. I didn’t treat it as an intruder in my body rather a friend who was going to assist me on the journey to recovery.

I had trepidation waiting for the treatment to start as well. What If? How Long? What About? I think it would be unusual if I hadn’t experienced those entirely legitimate feelings. I live by myself so found it important to me to cultivate a living in the day attitude although that didn’t take away 100% of my anxiety while waiting, but it helped me to keep busy and try to close the lid on that particular box of frogs.

I wasn’t advised as such but decided to put on half a stone in weight before treatment as I knew people lost weight, it was important to get food down my neck to help facilitate my body coping with the treatments offered and to help speed along my recovery.

I bought extra bed sheets, as it turned out one of my better ideas, because at one stage I was so exhausted I couldn’t use the washing machine lol. Lots of toilet roll. Stocked up on different foods and kept records of my particular journey on the iPad - feelings, appointments, medications etc.

During treatment I had infections, Covid and other bits and bobs but left it in hands of the professionals. I can’t fault the NHS in this regard. When the consultant at my first appointment said he was 90% certain it was cancer, he literally ran out of the room to get extra staff in.

I’m well now. Last check was a couple of weeks ago. I didn’t buy presents for the wonderful staff but as a form of appreciation volunteered for three trials. The first was before treatment. They asked for people to be rigged up to apparatus to check lung function, heart etc while exercising for twenty minutes. Then after treatment the same thing to mention the difference of the effects on the body of radiotherapy and chemotherapy. I think I could have provided them with the answer to that particular experiment half way through treatment!

I thought if couldn’t control the outcomes on the horizon I could work on my perception of things and keep every single appointment - 130 in two years. Nothing in my life has ever, ever, been as bad as I think and yet I can still go there in the area between my two ears. If things are challenging then I’ll hopefully deal with it in the way I do now.

Everyone has different experiences here. Gender, ethnicity, religion, rich or poor cancer is an equal opportunities employer.

You’re not alone here my friend. Take care…

It is unlikely to spread.  In the 3 times I have been treated for my cancer twice I delayed the onset of treatment to go on holiday and get Christmas and the New Year out of the way.  The other time Covid caused a 6 week delay.  I suffered no ill effects at any stage and was never advised by my clinical team not to do the things I did.

Hi try not worry I was in holiday when I found a lump in my neck wasn’t home for almostb3 months I had no idea it was cancer as I had no other symptoms. I’m still here 8 years later mine was hpv  tonsil cancer with 7 lymph nodes.