Hi Nicola,

Thanks for thinking about me (I posted a bit further back on the thread - July 5th - I'm cosily nestled between Simon and Colin   )

Sorry to read about your grandad and hope next week's appointment goes ok.

I managed to get into work for the last week of the term and tied up a few loose ends ready for September - just need to get a new pencil case and label my PE kit! I've no more 'treatments' in the offing so I'm enjoying the lull in proceedings! (Flexible sigmoidoscopy and lung CT are next on the 'To Do' list!)

Glad your fatigue course is helping improve your tiredness. I find this hot weather really sapping so I've been giving in and relaxing, catching up with reading or writing to friends! (The dust mountain under the bed will have to wait until this heatwave stops - I discovered it whilst looking for a lost earring!)

Take care, Nicola, love to you and everyone else on the thread xxx

Nicola, good to hear from you but sorry to reay about your grandad. You seem to be keeping occupied with some great actviity. I still feel fatigue and go to bed early. Running is hard. Just ran 4.5. miles and it was exhauting. Doesn't seem to be getting easier. Cycling OK though for some reason. Fatigue is normal I think. There is a good McMiillan book on long term side effects. As Simon says we should have regular thyroid checks and apparently this is easily corrected with medication but it is more likely just recovery. What is SHIATSU - THOUGH IT WAS A MUTT! Hope to get back to work end Aug on phased return. Bored sesnleless although kids now off should keep me occupied

Look After Yourself, Speak Soon, Gary

Hi Irene,

Like you, I wondered what might have happened to my cholesterol levels because of all the cheese sauce and other high-fat foods I had been consuming throughout treatment and beyond. The NHS pot meals that I lived solely on for the late summer/autumn period last year have a scarily high fat content. Boots were doing free blood checks and so I took the plunge and got it checked - amazingly it was wining acceptable parameters, albeit slightly higher than the last time it was checked a few years ago. Might be worth getting yours checked and hopefully you'll have a nice surprise too.

Fixed potatoes in cheese sauce regularly feature in my diet at the moment. As I can't seem to put any weight on I'm making hay while the sun shines!

I've also recently discovered Batcherlors Deli Box meals - they're a bit like Pot Noodles but with a lower sugar/fat content. They're really convenient to take to work and eat at my desk. I can recommend the cheese and broccoli pasta one.

Take care everyone.

Simon xx

Hello everyone,

I've purposely left it until now to update you all as I was waiting for my routine check up with my nurse, dietician and speech therapist which was yesterday. I now weigh a whopping SIX stone! Wahoooo!!!! This has been my target weight since radiotherapy finished almost 8 months ago when I weighed only 5 stone 5. Yesterday was the one year anniversary of my cancer diagnosis so it was good to have a bit of good news. I'll never forget that day, I can't believe it's been a whole year. This time last year I was sat at home all alone fretting about what might be, waiting to have my scans, that worrying time was the worst of all. This thread has also been going since then! It's great that we are all still keeping in touch.

My grandad is still hanging on, we have been told he probably wouldn't be with us by the end of the week, but he's still with us although he is very weak and just wants it to be over, so I hope for his sake it's not too much longer. It's really sad. He is 83 and has had a good life so I take comfort from that, but he's on regular morphine now and has a special hospital bed at his house with 24/7 care. I hope he doesn't have to suffer too much.

I'm still attending the fatigue course each week, although I did miss a week a couple of weeks ago as the fatigue was too much that day, however those days are becoming less and less. I'm now doing 14.5 mins of exercise each week, an increase of 2 minutes so I'm chuffed with that. I do an extra minute on the bike and treadmill but still only 2.5 mins on my arms as I can really feel the strain on my left arm where I had the graft and lost a big chunk of muscle. After last weeks gym session I went to the Bristol Balloon Fiesta and had forgotten how much walking was involved so was pretty tired, but still felt ok the following day so I've noticed an improvement with enegy levels.

I'm planning to return to work in a few weeks, with a very gradual return. I discussed this yesterday during my hospital appointment and I was wondering if a year was a long time but they have assured me that they would expect at least a year following the surgery I've had on top of treatment so that's made me relax a bit. I'm anxious about it, but feel I'm almost ready.

Simon, what a relief that there seems to be an answer to your night sweats, I really hope this improves or medication can help. I wonder if the Thyroid issue contributes to the fatigue a little as well? At least you're still seeing improvements, I was told yesterday people improve for up to two years following our type of treatment but fatigue sometimes even longer. It's good to know you're still seeing improvements a year on. Thanks for the tip on the Deli meals, I plan to try those as I'm not sure what I will take to work for lunch! I find egg mayo sandwiches are just about ok with lots of water, but I do struggle with ideas for lunch. Cheese sauce is a favourite of mine now too, also houmous, which I find extremely tasty.

Jo, good to hear from you, I did see your earlier post but I hadn't seen anything on your own thread for a while so was thinking of you. I do hope recovery from your op has gone well, it sounds as though it has seeing as you managed to get into work before the end of term. That's dedication! I'm not sure when you're CT scan and other procedure is but I hope is has/does go well. I also hope you're enjoying the summer hols, will you be back at work in September as normal or are you still taking things steady since the last operation? At least we've had some good weather recently although it seems we've had the best of it already!

Guzzle, I did laugh at your shiatsu comment! Yes it is a mutt but also a form of bending and stretching to release trapped energy. Sounds a bit hippy but I do find myself totally relaxed afterwards. He also managed to loosen my right shoulder, the side of my neck dissection. It's the first time in almost a year that my shoulder felt normal. He did have to press it quite aggressively and was surprised I didn't find it painful until I told him I have no feeling there anymore! How's is your fatigue going? Are you still planning to return to work soon?

Irene, it's nice to hear your sister asked after me. I must admit, my story does shock people and strike a chord with most people. It's not very often you hear of a reconstructed tongue! Especially at my age. My counsellor and creative writing teacher were both reduced to tears when I first told them! I agree, that I could easily become a vegetarian too, meat isn't a good option for me either, it gets stuck in my throat, but I find a beef lasagne easy enough to eat, or a cottage pie with lots of gravy. I seem to live on eggs too. I also worried about cholesterol what with being told to eat all of the wrong stuff for so long but I'm trying to cut back a bit now. Sounds as if all is going well for you, do you struggle with tiredness as well? Are you full time at work now?

Anyone heard from Gary/Vatch? He must be coming to the end of treatment now, but I haven't seen any posts from him in a while.

Speak soon,

Nicola xx

hi nicola.. i have just been diagnosed with midline tumour tounge base also epiglotttis extending into my left right lymphnodes.. i the same was brushed of by my gp also another hospital.. went to another hospital they said without any biopsys that it was cancer, now refered to yet another hospital that deal with head & neck.. i was at first led to believe it would be an opperation to remove then radio & chemo.. but no opp, chemo radio intensive thereapy for 6 weeks.. im quite anxious angry upset & scared... i hope all works out for you. take care good luck x

Nic, Im off for a week of intensive therapy first week sepp to return to work. After my gym sessions will look up shitzu etc. Wow 6 stone. IM more than 2 of you and Ive lost a bit! Well done. Ill just put my factor 50 on (woad)....

Hi Zoe, I'm really sorry to hear this news. It's a tough time anticipating the treatment but please take comfort in that I am almost eight months post treatment and I am doing just fine. It's not a pleasant experience but it will all be over before you know it and you'll be on the road to recovery in no time. It sounds as though you have the same treatment plan as me (and a few others on this thread - Simon, Guzzle, Colin and Irene). We have all been through it and come out the other side and we are all here to help you along.

When does your treatment begin? Have you got supportive family and friends who can help you? It's easy to feel angry, but try and focus on one day at a time. I wish you all the best and feel free to ask to any questions.

Nicola x

Hi Guzzle, what does the intensive therapy involve? Yes give shiatsu a try, it's not for everybody but I'm enjoying it. It took two or three sessions for me to feel at ease with it but glad I stuck with it now. I just accepted every offer of help as I didn't know anyone else who has been through anything like this and shiatsu, creative writing and the fatigue course are all really helpful to me.

Nicola

Hi Nicola,

I'm so sorry to hear about your grandad. It is such a difficult time for all concerned. I hope that he is as comfortable as he can be given the circumstances.

It's really good to hear that you are still making progress. Well done for getting some weight back on - the body needs lots of nutrition in order to repair and rebuild.

We are very similar in that the lingering fatigue is proving to be an issue that is very difficult to shake off. I think you're right in that there is some link between the thyroid gland and fatigue. Things are slowly improving and on some mornings I actually feel as well as I have done since before I was diagnosed - that's apart from a numbness around my neck/thyroid and a slightly sore tongue and mouth. Then in the afternoons I start to feel really washed out. I've found that things are much worse in this respect if I have a normal sized meal at lunchtime, so I am now just having a small snack (box noodle or similar) and a more substantial evening meal.  I start the day off with a large breakfast (latest fad is porridge with banana, cashew nuts and sultanas - sounds weird I know but it's good to eat nuts and sultanas again and they're too much on their own).

Vatch seems to be doing okay considering the stage he is at - he is updating his blog at .... gammaraygary.wordpress.com

Speak soon and keep putting the weight on.

Simon

XX