Newbie...

Hello all, posting on a forum like this is a first for me, I usually post about games or conspiracy theories, but this is the first time I have ever posted regarding something g that is going to touch every facet of my life, something so (for the want of a better word) serious.

I was diagnosed just before Christmas with a T1 M0 N0 neck cancer, localised to the base of my tongue. Since then I have been referred to the Christie and the Professor who is managing my case took approximately 30 seconds to break the news that it was actually a T4 tumour and for reasons unknown it was still M0 N0. The treatment plan they have for me is 6 weeks of daily sessions of radiotherapy, with 2 sessions of chemo using Carboplatin. I’m frightened, I am having my mask fitted tomorrow, and treatment starts on Monday. I’m not actually sure I want to do this! I’ve read up and I’m scared. I’m not brave, everybody and I mean everybody that I’ve been exposed to at the hospital have been attentive, emphatic and understanding.
I don’t want to do it though, are there any tales here that anyone can give me that ‘it isn’t as bad as you read?’...  Because believe me people, I am very tempted to just f*ck off to a Latin American beach and drink myself to death. 

  • Few of us are "brave" I think Babbinel, we just muddle through as best we can. The oft quoted saying that we are "fighting" is nonsense to me (though it helps psychologically for some).

    I agree completely that the tonsillectomy is dreadful, so much pain. I was "lucky" in that my GP had one (not cancer related) at around the same time as I did so felt my pain and acted accordingly.

    What is a Community Champion?

    Metastatic SCC of right medial piriform fossa plus four malignant lymph nodes diagnosed 8th October 2013. Modified radical neck dissection November, thirty-five radiotherapy fractions with 2xCisplatin chemo Jan/Feb 2014.

    http://mike-o.blogspot.co.uk/

  • I have been spoken to about feeding tubes, including PEP and as somebody who likes food, the thought terrifies me. It’s one of the major points of questioning whether this is actually worth it, radiation burns, chemically induced sickness, weight loss, thought of it all is horrifying. I today had my MRI scan, that was hard work! It wasn’t too much any claustrophobic feelings in the mask, but maybe 3/4 or so of the way through it, I got cramp in my jaw so needed a break which they let me have after the cycle before the contrast dye, thankfully they were the last 2.

  • Hey it will be and is totally worth it!.. all of your thoughts I had...was terrified..but it all came and I did it!...everyone does...you will get through this..all of us are here for support...xx

    Anna......
  • Hi it’s worth It ! If u can do it anyone can . I am now 16 month post treatment ,ok still have some dry mouth and some meats are hard to eat but rare rib eye goes down well, lamb as well it seems to be in my case the slow cooked meats now that I struggle with in early days  they were ok .

    its worth doing it to live the treatment is brutal no point lying recovery can be long but I was riding my bike in Spain 8 weeks after ok only a few km , but on our last trip in NIbemebr I was doing 60+ km. I now treat it as a mere blip in our life’s and are getting in with things. People ask if u am still me and I can honestly say  yes I am warts and all  ! Ok I see ent everyb3 months but don’t dwell in it it’s a check up  file it away until next time .

    everyone on forum will help you 

    good luck 

    Hazel x

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com

    i give a honest account of my experiences with tonsil cancer 

    T2N2NM equals tumour size 2-4 cm 2 affected lymph nodes  later changed to several after pet ct scan NM no distant metastatic .35 radiotherapy sessions and 2 out if 3 planned cisplatin chemotherapy sessions.   Now fast approaching the 2 years since end of treatment. Good luck to anyone starting out will always help if I can .Onwards and upwards to infinity and beyond.

  • Yes it does seem like a daunting trip doesn't it ? I think the medical profession have to tread a very difficult path between being honest and warning of the worst and not terrifying the poor patient who is starting out of this unwanted and frightening journey. The anticipation is worse than the reality in my experience, your imagination makes everything seem massively awful and daunting.  The trip will be broken down into small pieces and you will have to deal with them one bit at a time, along the way you will, hopefully, meet and be dealt with by kind and caring people who will make it all easier.You might find it helps to use a calendar and mark out the appointments over the next few months and you can see how far though the trip you are every day, it helped me. The eating side of it is a big issue for people because food is a massive part of our lives, probably more than anyone here realised before starting treatment, so its perfectly normal to be scared about it. There is a lot of information here in past discussions about food and eating with head cancer if you feel it helps to read about it.

    Please keep us informed as to how you are getting on.

    Jon

  • Hi babbinel, 

    my friend went through radiotherapy for throat cancer & the 1st 3 weeks were fine, it was the last 3 weeks that got tough for her. She never got a feeding tube as she still managed to drink the ensure shakes. Looking back her family & friends were so supportive and we all chipped in with anything she needed & I know thats what got her through!! The day she rang that bell on her last day of treatment was one of the proudest moments of my life.   6 months on she was at her husbands 70th birthday party dancing away looking fabulous. 

    you can do this it’s to help you get better a few months you will look back & be super proud of yourself. 

    good luck keep us updated how you get on. 

    xx

  • Hilary, I read your post days ago and since then, because I’m not used to the navigation of this forum (especially on my ‘phone) I’ve not been able to find your post to me in order to reply to you. 
    I felt compelled to respond to what you posted about your planning scans. I was in last Friday (10th Jan) for the planning CT scan, I managed it! I don’t suffer from claustrophobia and apart from my imagination running riot with me, I coped with it well.

    Yesterday though, (14th Jan) I was in for the MRI portion of the planning stage. I managed the first portion, after each cycle of the scanner I gave a ‘thumbs up’ but after possibly 4 cycles of listening to bad German techno music, I started to feel really uncomfortable. It wasn’t claustrophobia or the sensory effects, it was the fact that I started with cramp in my jaw, then I noticed I had cramp starting in my lower back. After one particular cycle, the radiographer asked if I was still okay... I needed to wave my hand to signal so-so, in fact... not so much! They stopped, came into the room and told me I could talk, I told them as best I could that I had cramp in my jaw and my back was hurting, they put a gel pack into the small of of my back and asked if I could manage a last 5 minute cycle of MRI before they put the contrast dye in. I managed it, but listening to the ‘German Techno’ punctuated by seagulls had become horrific. After that, they brought me out, let me walk and flex a little. I was assured that after the dye was administered it was the ‘home stretch’...

    So, they re-masked me, administered the dye and carried on. Those last minutes were awful! My epiglottis is swollen so I was snoring, I couldn’t swallow properly and I couldn’t even find comfort from trying to make patterns from the noises coming from the machine. 
    I got through it, it was uncomfortable, my jaw was aching, my back felt like I’d been lay on a brick and I was thoroughly miserable. They didn’t lie though, it was the last cycle and they got me out of it pretty quickly. 
    I’ve been assured that’s the longest I’ll ever be restricted so much and that I’d feel like that. They’ve not lied to me up to now...

  • Well done. That is one of the most unpleasant hurdles ticked off and done.  Treat yourself to something nice to celebrate.

    Jon

  • MRIs take ages and as you’ve found you have to keep still. Take heart. They are right, it’s the longest you’ll be confined. 
    My radiotherapy from clamp down to release was only ever ten minutes at the most. 

    Dani
    Squamous Cell Carcinoma base of tongue diagnosed September 2018. T2N0M0. 67Gy radiotherapy over six weeks December/January 2018/19
    The blog is my personal cancer journey, warts and all. 
  • I never really knew what the difference was was with all my scans, as far as I was concerned I was just going for another scan.

    I remember one being really noisy and another time I had to go for a full bone scan which really took a long time, with that one they but my arms in a big elastic band type thing, which might sound horrible, but was great as it took the strain from my shoulders and meant I could relax more.

    Made it to Christmas, made it to my birthday, had a nice summer, made it to my 2nd Christmas now writing a blog about my treatment - https://www.1in1440.co.uk/april-2018-you-have-cancer/