Hi Nicola

I just thought i would drop you a line as I have been chatting to simon who appears to have gone through the same thing i am now facing

At present I have a secondary site in my lymph node on the right hand side of my neck ... they can not find a prime site I have had multiple cameras and tubes doen my throught had a ct scan and a PET CT scan and no primary site found ... I am now going into Addenbrookes on monday for multiple biopsies from the back of the toung throat and a scape of the tonsil area (although i had them out when i was 8) before they assess my treatment plan

At present i have been told that they seeno need to operate and think the lump can be dealt with ... via the 6 week of chemo and radio therapy ... so you appearto have had it a lot worse than myself

I know what i have and accept it and like where Simon was i just want to get on with it and reading your and Simons posts has given me a flavour of whats ahead ... i know its different for everyone

Im just trying to get a perspective on what i am now facing and how long im going to feek crap for as i have a business to run and am trying to put in steps to limit the impact of my absenses

regards

Gary

Hello everybody,

Sounds as if everyone is doing well especially Gary. Have you finished treatment now? How are you feeling? Sounds as if you have coped well, how was the cookie? There was no way I could have eaten a cookie at this stage with a frazzled tongue! As for being bunged up, Laxido was what I was prescribed, it seemed to help. Strangely I've still got them as well as some other meds, I feel weird about throwing them away but I'm not sure why I'm keeping them, kind of a safety net I suppose. Keep me updated with the Leeds meet up, I love Leeds. I will try and make it if I can. You sound as though you have escaped the phlegm issue, I still get a sticky mouth first thing in the morning but the phlegm problem settled down a few weeks after treatment.

Simon, I've noticed an improvement with food too. I eat three meals a day most days now which helps the fatigue. Pleased to hear you say you have days when you feel like you've never had cancer, I look forward to that. I'm still waiting for my peg to come out, I have a tongue check up next week and I'll be making my disappointment known, I just want it out now. The referral should have been done almost eight weeks ago so it's time to make a bit of fuss I think! I'll be glad to be rid of it however every time something comes to an end and its another step closer to being normal again I get a little wobbly. I suppose like you were saying, it's all been a safety net and when it was time to have my PICC line out or stop meds etc I felt a bit shaky. Sounds as if you are back into the swing of life which is great, I hope you get the help you need with the night sweats.

Irene, sweet potato chips are a great idea! I will try that. I find regular chips too dry too and I can't have ketchup as it stings but I did try chips and mayo but again was still too dry. I add caramel syrup to my coffee and a big spoonful of sugar, otherwise I can't taste the coffee alone. The worst times are in the evenings when I fancy picking at something nice to eat. I used to have chocolate or cakes/biscuits, now it's rice pudding with a dollop of jam but it all takes so much more effort! Sorry to hear about the episode of blood, perhaps something was a little harsh on your throat which made it bleed. I know my throat is still ever so raw and wounded. If feels as if someone with long nails has scratched down the inside of my throat and the same areas seem to sting most when I get brave and try something a little spicey. It was also very sore when I had a bit of a cold and cough recently.

Gary, I'm sorry to hear of the position you find yourself in because of cancer. None of the treatment is pleasant but it is manageable. It does get depressing at times especially if you are unable to eat but you just have to keep reminding yourself that it won't be like that forever, only three months ago I couldn't ever imagine eating normally again but I'm already tucking into meals. In terms of time off of work etc, I didn't work at all throughout my treatment but that was due to the major operation I had a couple of months before my treatment started and I was told to expect a minimum of four months of recovery time from the surgery alone. However I did meet another person having the same treatment as me and he managed to continue working through most of the six weeks, I believe his job was partly physical. I would suggest putting steps in place to ensure you don't have to work and if you can then its a bonus. You never know how you'll feel from one day to the next and it can be quite exhausting. I know I couldn't have thought about working when it was happening for me, I struggled for three to four days following the chemo each week but everyone is different. Also, try to remember that the recovery for a few weeks afterwards is when you will also need to rest. It all sounds like such a lot to think about in the beginning but as long as you have help and support, it's only a short time of your life that will be disrupted. You'll be back at work and back to normal before you know it! I hope all goes well on Monday, let us know how you get on and please feel free to ask any questions. I'll be thinking of you.

Speak again soon,

Nicola xx

Hi Nicola,

Just a quick welfare check......

How's it going - fatigue and ulcer any better?

Just wondering (as I expect others are).......

Simon xx

Simon, ditto! Sometimes people need to move on and counsellors may advise to stay away from forums. But I was wondering how Nic was. Regards, Gary

Hi all,

I've not posted on here in a while as I didn't have much to update but now I realise it's been three weeks, time has flown! Thanks for asking after me. I've been attending the fatigue course each week but my trainer has not yet increased my exercise as I've been very tired for a couple of days after, although last week I felt fine for the first time so today he said he will increase my times next week if I'm fine again this weekend, fingers crossed. I've also been attending my counselling, creative writing and had my second shiatsu session yesterday. I enjoy all of them but I do get quite tearful during counselling. It seems I'm struggling a bit emotionally with coming to terms with all that's happened. It's also been a sad week as we found out a few days ago that my grandad has pancreatic cancer which has spread to his liver, so cancer strikes again in our family. We will know more next week when he meets with his consultant but sounds as though not much can be done for him. Hearing this news stirred up some horrible feelings for me but as he's old I also feel thankful that he doesn't have to face the dreaded chemo etc.

On a brighter nite, Simon, so pleased to hear you managed to eat out! I bet it was divine! I'm hoping to try a chow mein for my first take away, I used to love chow mein. Any more news on the further blood tests? I've been advised to get my blood checked too as the dentist thinks this could help find out if anything particular is contributing to my fatigue. I too feel fatigued for two or three days of the week then feel pretty good the other days. I've made adjustments to everyday life accordingly, is that how you manage it too? How are you coping with a dry mouth in this hot weather? I'm drinking so much water it's ridiculous! The ulcer on my tongue is still there, thanks for asking, although not as sore. I have a check up next week so will mention again.

Guzzle, you sound well and chirpy (although you have sounded upbeat all the way through!) you picked a great time to go to the IOW, we've been very lucky with our summer so far. How are things going? Are you still managing to exercise and eat well?

Irene, sorry to hear about your mum, must be extra work for you. I did laugh at your post about your husband and your car journey! There was a time I might have got annoyed by such things but cancer has definitely chilled me out! Glad to hear your chest infections have settled down, although was surprised to see you managed fish and chips with milk. I can't enjoy chips anymore, too dry and I don't think I've attempted fish yet. Milk is a no go as I can't taste it and its too cold. Anything cold or hot has no taste for me. I tried an ice cream the other day and after three licks (not that I can lick anything anymore with my new designer tongue!) the taste was gone.

Gill, pleased to hear work is going well for you. It's just as well too as money can be such a worry, worries we really don't need at such awful times. Have you heard anything from Jo? I can't see any recent posts from her and was wondering how she is recovering from her op. I've thought of her quite a bit, I hope all is as well as can be.

Colin, good to hear from you. I too enjoy the small things in life so much more these days. I thank god everyday that I got through that dreadful time and it was only a few days ago I felt so blessed to be spending a day out with my little girl on the beach. I have a weak arm too, although for different reasons. The graft on my tongue came from muscle and veins in my left arm and I struggle with lifting/carrying with that arm. I only hope I can also get to 78 with such a good outlook on life,

Good to catch up with everyone, I wont leave it so long next time. There's no keeping me away from here, this discussion board has helped me a lot.

Speak soon,

Nicola xx

Hi Nicola,

Good to hear from you and I pleased that things seem to be moving in the right direction for you, albeit very slowly but I guess that is the way things are with recovery.

Really sorry to hear about your grandad's situation. Hopefully he won't have to endure the treatment regime as we did. I'm not sure how old your grandad is but I do hear of older people developing cancer but in the overall scheme of things it doesn't actually shorten their life, i.e. their life expectancy is in any case less than the rate at which the cancer is likely to spread or develop. Let's hope that the prognosis isn't too severe.

In relation to fatigue and physical activity and to give you something of a benchmark - I am now exactly one year on from the start of my treatment. I still have a day or two each week where I get very tired in the afternoon, however I can really detect that this is very slowly improving week on week. I used to run 25 to 30 miles per week with no trouble. Now I walk a mile from my house to the station, and then a mile across London to my office - when I get to my desk I'm pretty knackered (although a couple of coffees soon sorts me out and then I'm fine). I think that your dentist is right in that a blood test is a good idea - I think that it is relatively common for things such as red and white cell counts to be low for many months, and possibly even years, after treatment. Low red cells = fatigue (or so I'm told - I've stopped checking these things on the internet). My saliva situation has continued to very slowly improve - it's still some way off of being normal but it is definitely improved on how it was a couple of months ago.

I've recently had another CT scan, blood tests and a 24hr urine test (you really don't want to know), and apparently my thyroid is not quite how it should be. It is not apparently seriously amiss but it could be what's behind the night sweat problem apparently. I have to go for the same tests in October to see if things have improved, if they have then fine, if not then I'm told that it can be addressed with medication.

Speaking of chips! You reminded me and I can't remember if I mentioned it - I was at a horse event over in Somerset a couple of weekends ago and there was a van selling chips covered in gravy - well they went down okay and it was really nice to have something naughty and normal. Worth thinking about. If you're trying this at home then I think that fried would be better than oven or microwave chips. Also, my wife now makes cheese sauce for me on an industrial scale - we freeze it in smallish containers and I get one out every few days. This has enabled me to eat fried potatoes, quiche (including the crusty pastry), burgers and all types of veg. I've even had a steak and kidney pie! We make the cheese sauce more flavoursome with onion. Still can't do cereals at breakfast but I have porridge and fruit now. Bread is a big no-no except in soup. Good luck with the chow mien, Nicola.

I think that the thing to keep in mind is that how we are now is not how we are going to be for evermore - it's just that progress is so slow that it feels that way.

Keep your chin up, Nicola. You're moving in the right direction.

Simon. xx

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 Nicola

Great to hear from you.  I was hoping the fact that you hadn't posted for a while was a sign you are feeling better and moving forward, which it sounds like you are.  You have certainly been busy with the the fatigue and counselling sessions which I think must be doing you good, especially releasing those pent-up feelings.   My sister (a fellow cancer survivor) was asking after you the other day as she knows all about how helpful I've found this forum and was delighted to hear you are on the road to recovery.  I hope you don't mind me telling her your story but it was kinda nice that she asked after my friend on the forum.  So sorry to hear about your Grandad but what Simon says is so true, I know of several elderly folk with the situation just as he describes it.  You are right to take comfort from the fact that he won't have to endure chemo. 

Simon - your eating habits sound exactly like mine.  I didn't eat a vast amount of fish and chips that night, but the fact that the fish was deep-fried in batter and they were deep-fried chips made from real potatoes made all the difference.  Such a naughty indulgence before last autumn!  We ditched the chip pan years ago in favour of very occasional oven chips, but it's making a come-back.  Also a big cheese sauce fan; probably my favourite meal nowadays is cheese and mushroom omelette - easy to swallow and I can taste it too.  I could quite easily stop trying to eat meat and become vegetarian.

All this extra fat content can't be doing my cholesterol level much good though!  Not a fan of ice-cream any longer either Nicola.

Jo glad you managed back for end of term. Keep on relaxing and making the most of the summer break - plenty of time to sort out your pencil case and PE kit!   It's even been scorchio up here in Perthshire and this former sun worshipper has taken to the shade.  I hope the next 'oscopy' isn't too horrible an experience and that it yields the best of results.

Best wishes to Colin, Gill, Gary G, Gary V and everybody else on the thread.

Love Irene x

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

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)....

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 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