Disconnected thoughts

Hu Tunis_Cake. You have written wonderfully what many of us feel as we start this journey. I am four years clear of radiotherapy, living well and have put all this behind me. Four years may seem as far as the moon to you right now but this cancer is curable, time passes and we do get better.

The next few weeks are going to be tough. There's no getting away from that but it doesn't last forever. The advice I give is to not be brave. Tell your team how you are every day, take all the drugs they throw at you. At least you are getting chemo therapy only twice so you'll have time to recover. Take your analgesia by the clock so you aren't chasing the pain. Look after your mouth with all the mouthwashes you get. I fed by nasogastric tube from 4 weeks at night slowly by pump so I had the days free. My oncologist told me that the cancer would take a year out of my life but that he would cure me. He wasn't far wrong on the first and spot on the second.

I was 67 when all this started. Yesterday I had my four year review and I am good. Just one year and I can shake the doctors off my skin like a dog shaking off a shower.

I have a few posts that might help in my blog at the bottom of this post. The recent post on the history of radiotherapy has a link to a young man's video diary.  Click on this forum member MarkEL . It will take you to his profile where he has a good diary following his treatment. One of our other members, Hazel RadioactiveRaz  has a very helpful blog. If you click on her name her profile has a link.

Hold on. Stay with us. There's lots of help here. You'll do it

Hi Tunis cake. Youve come right place. We’ve all been where you’ve been. Dani’s us right n what she says. I’m almost the magic 5 years but you’re st the start. Deep breaths don’t look too far in don’t take it one day at a time. My blog below give my chronological way i handled what you’ve to face. The    N g feeding tubes nothing to fear you  can either feed during g night  like Dani did or  I did during day I got a rucksack from hospital and used  to feed during travel time ti hospital. While I was pottering in garden washing pots or watching tv.  As gif side effects we have ti be told what we may get it’s rare to get them all. My oncologist also said he would  cure me but take a year out if my life to give me many more.  He did both. 
Don’t worry about biopsy on tonsil they  didn’t take mine out and I’m still herd. The teams kniw what they are doing. The waiting’s the worst part. We’re all here to help. 
hugs Hazel x

Hello Tunis_Cake, your post really took me back to how I felt when I was diagnosed last summer. The possible side effects that they tell you about and that I read about on here are scary but you may not get many of them. I had an NG (nasogastric) feeding tube for a month or so and it was a godsend, it means you can stop worrying about losing weight and eating/ swallowing. Treatment is tough, there's no getting away from that, but less than 3 months after starting chemo & radiotherapy I was able to eat Christmas dinner (with lots of gravy) and after another 3 months I'm pretty much back to normal apart from dry mouth & keeping up my swallowing exercises. I hope that helps. Take it one day at a time & you'll be through it before too long.  Sending love & good luck x Catriona

Thanks to all who replied so far.  I’m currently sitting here a couple of hours after my second dental extraction session (6 big teeth out) and just really likening the experience so far and the months left to come as me being like a plastic bottle in a fast flowing stream … just speeds from place to place, each place doing what they want/need to and then I’m bobbing along to the next and the next with no real say.  And like a plastic bottle in a stream, none of us should really have been there in the first place. 

My mouth feels like it’s on fire and I’ve popped several painkillers and I’m thinking that if I’m struggling with this tiny level of pain now, how am I going to get through the next 3 months.  

I also feel that the initial whoosh of care and info has ebbed away.  I knew there was a two week gap after the measuring/moulding of the immobility mask, where techs are working hard behind the scenes to compute angles and power levels and things, but there’s a three week gap between now and the immobility mask even being measured.

I guess it’s all normal , and it’s all happening as it should be.  My counsellor says I’m still in “diagnosis shock” and I’m trying to not see through the breathing techniques as just mindfulness tricks (while you’re counting all those seconds for breathing in/breathing out/holding etc, your brain can’t be thinking of the diagnosis and the treatment hell.  

im feeling myself changing, getting snappy at those who are around, having zero tolerance for sloppy shop/cafe service (I walked out of one the other day when they wouldn’t do a nice soft omelette without the hard crunchy chips on the plate - even after I explained that I’d just been to the dentist - I’d never have dreamed of walking out of a place before).  Im short fused, my sense of tolerance of others and what is “important” and what isn’t.  Im not the man I got used to, and I’m not liking this one at the moment. 

probably the same for all - sure it’ll pass - thanks again for the replies previously 

Hi it will pass. I snapped at my hubby in fact I was nasty to him several times. I too walked out of places. Life goes on around us and we are in a cancer bubble. You will cope with pain as we get given high dose opiates. Take it one day at a time. Watch trashy tv .

Hazel xx

Hi Tunis_cake,

You have described in your post exactly how we are at the moment.

My husband is 3 weeks post his operation and yesterday received the news that he would need 6 weeks radiotherapy and twice weekly chemo. I need to arrange a dentist app for him and also we need to meet the team and start the mask prep meetings too.

It's so overwhelming isn't it!!

My husband is trying to be brave for me and the children but I know he is absolutely petrified inside.

I can only say to you the same as I am saying to him - and was also advised to me on here - one day at a time.

I think we have a tough few months ahead, but we can support eachother here as well. I have already been given some wonderful advice and support here and I hope that I can do the same for you as we negotiate what lies ahead.

Paula x

Hello  

i am just over 1 year since surgery and a year since radiotherapy. 
i found such a lot if support on here. 
someone said to me, try and focus on 1 day at a time, we all respond differently to treatment and yes its hard. I didnt have a feeding tube (apart from immediately post op for a few days). When i had radiotherapy about half way through i asked for one as i could see my intake was going down and i was weak. The Naso gastric tube really helped me. I used to have my feed going overnight. I also was given a rucksack to place the feed and tubing in so i could do as i pleased and be independent.

Take care x