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,

I'm sorry to read about your grandad. It must be a very emotional time for you all.

Can't believe it's been a year since your diagnosis and your starting this thread.

I'm glad your thread has continued to run - a great support to everyone on it - even for those of us whose cancer is physically poles apart from the neck and tongue

It must give you heart to read the early posts and see just how far you've come!

Your weight gain sounds impressive! As does your increased exercise regime. You put me to shame as I don't follow an official exercise plan - I do try to go out on dog walks though, and have increased the housework and gardening! How much I get done only gives me an indication of how less tired I am, but doesn't really get my heart rate up! Could do better!

I'm beginning to put my pre-op weight back on now! Almost reached 48 kg!

When the doc explained that I wouldn't gain weight until my body was no longer taking what it needed to regenerate my liver, I relaxed and stayed off the scales! I'm no Sherlock Holmes, but I'm guessing that my weight gain means my liver is back up to speed!

Simon's breakfast of porridge with sultanas, bananas and cashews sounds delicious! I love nuts and fruit, but can no longer eat them as they may cause a stoma blockage! I suppose I could chew and chew (and chew) the nuts, but I now tend to cut out the middle man and just have peanut butter!

Talking food, "Hi Irene" - I share your concerns about cholesterol levels! Funny how we're all advised to 'up the fat content' in our diets, but for those of us with heart disease in the family, it goes against the grain! It's all about balance and moderation I suppose! (And I am enjoying the 'prescribed' bag of crisps each day!   )  Irene, I've now had my 'oscopy' (flexible sigmoid) and thankfully, it showed no recurrence of anything nasty! Huge sigh of relief!

Hope you're ok? Reading back through your posts, I see you had a trip to Northumberland. Such a beautiful part of the country! Your 'grumpy old man/woman post made me laugh!! Glad you got your fish and chips in the end! (My favourite fish and chips were from Seahouses!)

Nicola, Keep us posted about your return to work. I'm sure your employer will be very supportive about your phased routine. Will you have a consultation with your employer and Occupational Health and HR? I don't need to tell you to take it slowly - remember, you want a 'phased' return, not a 'Fazed return!

As you know, I managed the final week of term (the head teacher 'protected me' from the teaching side and I was able to bumble along in my office role for the week!)

I made the decision to reduce my working hours and in September, I'll be working a four day week instead of full time. We (partner and I) weighed up the financial loss against the health gains and it was a no brainer! The head has even allowed me to be flexible about which day I take off (Mon or Fri) so I can now look forward to 'three day' weekends! (Maybe I'll do more exercise on my day off, Nicola. Or eat more cake and crisps, Irene   )

Well, I'll sign off now, but I send you all a big hug!

Take care everyone, Jo xx

My God Nicola your fitness routine sounds exhausting

Im knackered after just walking my dogs for 40 minutes at the mo

I tried reflexology the other day whilst at the hospital ... it was free and part of an alternative therapy ... nice but too light for me i needed something a bit more deep tissue related, which they dont offer...so think i will weight a bit then treat myself to a proper massage

so hows everything going with you now ... slowly getting better i hope ... Guzzle appears to be sunning himself at the mo ... although under the influence of factor 50 and a large hat ... and Simon is away soon too ..... lucky beggars

hope all is well though

Nicola / Jo,

Forgot to mention in my post of earlier today, and Jo, you've reminded me......

During my monthly visit to the oncologist for my check up last week he asked how my weight was going. I told him that I was still around 2 stone lighter than I was pre-treatment and that the weight wasn't going back on. He then suggested that I try deep-fried Mars Bars. At first I thought he was joking but it soon became clear that he was being serious - I kid you not! I was being advised to bulk up on deep-fried Mars Bars by a medical practitioner. Needless to say I haven't taken the advice (we don't have a deep fat fryer in any case).

Had to laugh.

Simon XX 

Wow Simon that is a bit excessive

Deep fried mars bar ... i know that do a lot of that up north, but have not tasted anything in 6 weeks now ... i cant say thats one of the things on my bucket list of food

If you have a blender try blending a mars bar into some full fat milk with ice ... its a sort o Milkshake ... there is a van that come round here sometimes and he put any chocolate bar you want into a milkshake ... in fact its any sort of confectionery

I've now lost a stone and a half ... but my wife did make me put on a stone before i started treatment ... glad i have lost that though, so i suppose i have only lost half a stone in reality, but now my food and nutrient intake is down i know I am losing a couple of pounds a day ... this will be ok for the next couple of days , then i will try and pick it up .... The family had a take away Chinese last night, i managed to have cooked vegetables soup and some chow mien and then i just went round smelling everyone elses plate .... God it smelt so flipping good .... rthat was my food *** for the weekend

Sorry I am talking about food again

Deep fried mars bar (or pizza) is a Scottish delicacy. It is minging. Haggis Samosas are lush mind. Got sketchy wi fi but just caught Liverpool  game in a bar. Seriously I reckon 50 % of what I lost was muscle. I doubt the wisdom of eating utter rubbish. Novel quack. He may prescribe single malt to help you sleep! Am indeed sunning self. Just not neck!

Lisa got week in a work centre to get myself as fit as possible. Designed a fitness program and will pick from menu of therapy. Alas no creative writing.

Any of you get to Liverpool and I will make you a pan of nutitious scouse. Managed 3.5 miles at 36 degrees....

Hello Friends

Enjoyed catching up with all your recent posts, but only just found myself with a bit of time to reply properly.

I was determined not to mention the 'f'' word, honestly Jo , but since I've chosen to reply to Gary Guzzle's retort on the deep-fried Mars Bar, I have to say something! Never was a fan of the Mars Bar even when I was a chocaholic (Cadbury's girl me), but deep fried in batter? Never tried it and never will - yep it must be absolutely minging Gary!   Sure it was invented by a Glaswegian; we on the east coast of Scotland have far better taste!  Give me a haggis fritter any day !!  Oooh, haggis samosa Guzzle? Now that sounds a bit of alright too!  I must be getting my kicks out of talking about grub rather than actually eating it.  However, from this point forward (on this post at any rate) I resolve that no more f*** will be mentioned by me, other than I still don't much enjoy the stuff!

Nicola - huge congratulations on reaching your target weight and thank you so much for starting this thread which has given so many people encouragement and comfort and I'm sure will continue to do so.  Such an emotional time for you with what your poor grandad has been going through.  My Dad (he/we celebrated his 90th birthday recently) had a fall last week and banged his head.  He's been in hospital since Saturday. GP thought he had mild concussion but 2 days later he suddenly became very confused and disorientated (he's usually sharp as a tack) so has now had a raft of tests and a CT scan which revealed a small bleed from the brain.  He is suddenly locked away in a world of his own and while some sentences come out OK, most of the time he can't really communicate as he can't get his words out.  This may only be temporary, but it is so frustrating for him and very hard to deal with as he gets very angry and agitated because none of us knows what he is trying to tell us he wants/needs.  Much as I dread the thought of losing him, I would hate so much more seeing him stuck in this state for a long time.  So, I very much share your feelings that whatever the outcome, he has had a very good life and we will take comfort from that.  It's a bit of a see-saw though, my Mum who is not long home from a spell in the same hospital has really perked up recently and enjoying life a bit more, then this happens to Dad .

Sorry to hear you and Simon are still struggling with fatigue but good to hear the shitsu, oops shiatsu is helping you Nicola. I think I've got off fairly lightly in the tiredness department as I'm pretty much firing on all cylinders again.  I'm managing my work (6.5 hours a day is my full-time) and no longer need naps during the day.  Simon, I could talk to you about eating (or not) all day, but I promised I wouldn't go there this time - thanks for latest tips though!

Jo, am so pleased that the 'oscopy' did come up with the right results and the 4 day week sounds like a wonderful idea.   Your posts always make me laugh. You've certainly got my measure and given me a complex re the 'f' word (only joking, honestly!) and also taught me how to use emoticons - thank you and keep up the good work.  Hope the return to your little darlings isn't too much of a shock to the system.

Gary Vatch, your weight loss is exactly the same as mine at a stone and a half.  I was overweight when I started out and while I have always yo-yo dieted and lamented the fact I was too heavy, after this experience I probably feel glad that I was carrying some extra weight beforehand.

Best wishes to everyone else on this thread and especially to Zoe.  Good luck with your treatment and please do keep in touch.  We're all here to support you.

Love Irene x

Hi all,

Thanks for all your relies.

Guzzle, I didn't realise you had been away on holiday, where did you go? Did you manage to find some good insurance? How is the week of the rosy going? re you still planning to return to work next weeks.

Simon, although it's probably frustrating to feel washed out during the afternoons, I was glad to hear that you feel similar to me, it's reassuring. I'm returning to work on a phased return in six weeks from now and I'm kind of looking forward to it but also very nervous. I know I will be very tired and that will probably feel like a backward step but I suppose I have to accept that's the way it is for me now. A few months ago I would be washed out for a couple of days if I went to the park with my daughter but now I just need an hour on the sofa with a cup of tea and I feel a little recharged. I think I'll give the fried mars bars a miss though! They don't sound appealing at all but as we were speaking about chips recently, I have found McCain Smiley Faces to be edible for me. I buy them for my daughter who is 3 and thought I would try one and they went down ok! They are oven cooked potato circles (with little faces on them!) and are a little crispy but not as dry as chips. I've also tried coconut water and coconut juice. It makes a change to sipping plain water, the Nutritionist suggested it. She also suggested adding Thyme or Parsley to mashed potato and that tasted wonderful! I'm still to try the box of noodles thou, I must buy some for myself.

Jo, lovely to hear from you and I encourage your four day week at work. I think that's a great balance. What will you do with your extra day off? I also agree with your thinking that your liver must be repairing itself well if you are managing to gain weight again, well done! Don't be too proud of my work outs, I'm only doing it as I was referred by my speech therapist, however I do enjoy it and think I may continue once the course ends. A little gentle exercise can boost energy levels apparently and it definitely works for me. I got filmed last week, I was asked to take part in a video that could be shown to other patients or at "Moving on" days. I was asked a series of questions about my cancer and fatigue and how the course was helping, so you never know, you might see my mug on some video at some point haha! I'm now doing 15 and a half minutes per week when I started out on 12 and a half about 8 weeks ago. I hope the new term isn't too hectic for you and try not to over do it. You don't want to lose that weight you've been able to gain  

Irene, I hope your dad is getting well again, it's so difficult to see older relatives in a helpless situation, I hope he has a speedy recovery.

I was also worrying about the fat content I've been told to eat this year, I know it was important for me to gain weight but I'm worried my teeth may rot and I do have a bit of a bloated tummy! Something I've never had before, I've always been stick thin. I thought at first it was swelling from the peg, but now I think it's all the calories I've been told to eat! I hope it will disappear as I become more active again. This fatigue is a bit of a blighter, it's so frustrating, especially with an active 3 year old, but I do have one day each week when she is at nursery and I have no appointments to attend so I can rest up. I look forward to those days! I too was a cadburys girl, but can't manage it now, I find Galaxy chocolate is easier or Kit Kats, especially dunked into a cup of hot tea! Cadburys chocolate seems to burn my throat now. Can you manage samosa? Too painful for me!

Vatch, good to hear from you. I couldn't access your blog from the link that Simon gave but I hope you're gradually feeling better. I'm impressed that you were able to try some food. Things will be on the up for you now I'm sure, six months ago I would never of imagined myself feeling as well as I do today. I hope your recovery is speedy.

Speak soon everyone,

Nicola xx

Hey Nic, went to Malta. Lovely for kids. Am on last day of pamper week. Enjoyed Reiki and hot stones. Been in gym each day. Took a bike into Harrogate to Bettys tea room for cream tea! Heading home tomorrow. Google the Liverpool zip wire! Then work Mon.....

Hi Nicola,

Really good to hear from you. Sounds like you're moving in the right direction but, like me, you're finding the progress slow. I have to say that I do feel better and more energised than I was a month or two ago - I try to think over that sort of timescale because I don't really notice any difference day on day or even week by week. Things are definitely moving in the right direction though so I'm confident that they will do for you too.

Those Batchelors' Deli Box Noodles and Pastas are sold by both Tesco and Waitrose and they're usually on the shelf next to Pot Noodles. The good thing is that the Deli Boxes have a far lower sugar content than Pot Noodles and so are less harmful to teeth. They also have a far lower pepper content and so are less likely to aggravate the throat or mouth.

I'm now into porridge in a big way. I microwave a large bowl with cashew nuts, sultanas (only a few of these because they can make the mouth sore), and blueberries, and whilst it's cooling down I slice up a banana and put that on the top. I have that every morning for breakfast and it really sets me up for the day. It might be good for you because the nuts have a good few calories in them.

I'll look out for those chip things that you mentioned - they'll be good with my wife's cheese and onion sauce.

We're off to Spain for a week in 7 days time. We've booked a villa so I can prepare my own scrambled  egg and porridge etc. It'll be good to have a break, our first since I was diagnosed. We decided to stay in Europe in order that I would be covered by the blue card.

Good luck to you, Nicola - it's slow progress but we're getting there!

Speak soon.

Simon XX

Simon, have great holiday. All, thought Reiki was excellent. Anyone heard from Vatch?

Simon, have great holiday. All, thought Reiki was excellent. Anyone heard from Vatch?

i'm here

just had a rough two weeks post treatment in weeks 7 & 8. Now in week 9 and starting to feel a lot better

i will fill you all in on my post

Glad you are all doing well though ... im just about on Rice Crispies in the morning and a pot noodle in the evening ... nothing too hot though

Good to hear from you namesake - glad to know you are on the mend and eating. Just been in Liverpool Zip Wire (google it!). That will be you soon!

Hi all,

Just a quick hello and to tell you all that it's exactly one year ago today that I had my tongue surgery - September 12th - and I have uploaded a photo to my profile on here of my reconstructed tongue as it looks today, if anyone is curious! I've also added a photo of the scar on my arm from the graft - where the tongue graft was taken from.  The skin graft on my tummy (which repaired my arm) and my neck dissection wound are both looking pretty good these days although still noticeable.

A year ago I was "sleeping" in Intensive Care for a few days until they brought me around and little did I know back then all of what was ahead of me!  I've learnt to eat and speak again, felt more unwell than I've ever felt before but most importantly I've learnt the true value of life and happiness. What a year it has been!  A huge thank you to all of my online friends who have helped me and encouraged me through it all, I will never forget you all.

Hope you are all well & speak soon,

Nicola

Hi Nicola,

Well done for all you've achieved over the past year and Happy Birthday to your new tongue!

The last 12 months were a huge challenge for you and I'm so pleased that things are going well. At least I only had to focus on myself and I had the support of my wife - you had to cope with raising a young daughter at an important stage of her life.

Keep us posted on how things are going - you are an excellent motivator for others.

Simon XX

Nic, still a beautiful young woman with lots of life ahead of you. Congrats, Gary x.

Simon enjoy your jollys.

Hi Nicola,

Wow! It certainly has been a year for you! Congratulations on all you've achieved so far!

You and your daughter look beautiful in your photo.

I hope you continue to get stronger, less fatigued and heavier!   (though I know how hard the latter is to achieve!)

How are the going back to work plans? Remember to take it slowly. I made the decision to reduce my working week to 4 days and I'm enjoying the longer weekends with having Fridays off (though so far they've involved medical appointments!)

My 'anniversary' is next Wednesday, but I don't think I'll upload my stoma photo - certainly not as photogenic as you!

Keep posting with how you're getting on.

Hugs to you, Jo xx

Hi Nicola

Congratulations on your year milestone - you look amazing!

I thought my "journey" was tough but yours was far tougher. As you say, it certainly makes you value life and makes you stronger.

Debbie

on Vatchs thread Nic suggested anyone who fancies ot getting together. I was trying to see access in Yorkshire a few weeks ago but unfortunately he couldn't make it due to treatment. Where would be the most Central place?

Hi Nicola

Huge congratulations on this milestone - what a long way you have come!  It was lovely to put a face to your name and a very happy one at that - you and your daughter look beautiful.  As Simon says, you really are a great motivator for others joining this thread, so please do keep posting to let us all know how you are getting on.

Well I'm buzzing a bit today after the exciting achievements of my daughter, niece and 9 of their friends yesterday.  They climbed Ben Nevis to raise money for the Ninewells Cancer Campaign, a local charity which initially formed in 1991 to raise money for a CAT scanner at Ninewells then went on to help establish the University of Dundee Biomedical Research Centre.  It also helped fund the Princess Alexandra radiotherapy unit where I was treated and continues to raise money for cancer research and treatment at Ninewells Hospital and Medical School.  After my illness and a couple of stays on Ward 32 (also a beneficiary of this campaign) Amy was determined to try and 'give something back' - in her words "....most of the girls that are doing this challenge with me have experienced this on some level and so I was keen to raise money for a more local fund, for the very people that look after our own loved ones, our mums, aunty, granny, grandad, brothers¿.. for the hospital we'll be visiting and that we hope can give them the very best treatment and support".  Between just four of them they have raised over £1,300, with the totals from the other 7 girls still to be added!  So my wee heart was just bursting with pride last night, as well as feeling enormous relief that they all completed it safely. It was a really hard slog for most of them although 3 superfit lasses zipped up and down in 5 hours most of the rest of them took over 10 followed by a long drive back from Fort William to Perth and Dundee.  Visibility at the summit was poor, but the weather was kind to them so at least they managed to enjoy some spectacular views along the way.  So you can probably tell that I'm one very proud mummy indeed!

I am doing fine, with my 8 month check-up due next week.  My other good news is that my Dad is making progress, although very slow.  Thankfully he has recovered his speech which was so frustrating for him.

Great to hear you are beginning to feel better Vatch and hope you have a lovely, well-deserved holiday Simon.

Keep well everyone!

Love Irene x

Hi all,

Irene, what fantastic news! I was beaming from ear to ear when reading your reply, I love it when people take time out from their own busy lives to raise money for cancer charities etc. I take a personal gratitude from it. Any fund raising event is great but what your daughter and friends did was extra fantastic! Well done to them! Glad to hear your dad is on the mend too.

Simon, I hope you are enjoying your time away, god only knows you so deserve a holiday! I hope the heat isn't too much on your dry mouth but good thinking in that you are able to prepare your own food. I must say, I can't manage porridge myself, I really would love to have some (I make it for my daughter in the mornings) but my mouth just doesn't fancy it. I must remember those noodles next time I'm shopping, could be a good option to take to work when I go back. I did try sweet potato chips yesteryear, I found them dry but tasty. I will try them again.

Guzzle, never been to Malta but heard it's lovely. How was travel insurance? You must be back at work now? How are you finding it? I did google the Zip Wire, looks pretty scary! I did manage the Indianna Jones ride at Euro Disney this summer but I still had my PEG back then and when the ride went upside down, the PEG leaked! Some fluids seeped out of the hole in my tummy!! I stuck to the tea cups after that.

Jo, I remembered your 'anniversary' must be coming up as I remember it being very soon after my own. Can't quite believe it was a whole year ago! Work plans are for me to begin with one half day a week in a month for now, then build it up gradually, thanks for asking. I met with my manager today to put a plan in place and it sounds like the first day will be an easy one. I'm very nervous about it, but time to try it I think. Two of the weekly recovery programmes I'm doing will have ended in the next few weeks so the thinking is that I'll have more time and energy to be at work although counselling and the fatigue course will continue. It will be good to be active again, both mentally and physically but I just hope I don't burn too many calories, it's hard going gaining weight as you well know    I can relate to the medical appointments taking up days of leisure, it's the same for me at the moment, but hopefully you are able to rest up at the weekends. One child for me is tiring enough so I can imagine multiple kids at work must exhaust you!

Vatch, I have to say again, your blog really hits the nail on the head and explains everything so well. I've forwarded it to a few friends to read, just so they can get a better understanding. Looking forward to reading your progress, it will only get better from here and pleased to hear you are progressing well.

Thank you to all for your lovely comments on the photo from Debbie and everyone else. I hope you managed to see the 'tongue' photo. It's quite amazing what they can do! Had a tongue check up today and check ups have now gone from monthly to every other month as I've now passed the one year mark - although only 9 months in remission, since treatment ended in December.

A meet up would be great if it can be arranged and if people are interested. I'm in Bristol but happy to travel. I always feel most normal when I'm with other people who have experienced cancer, does anyone else feel that way? Must look into support groups in my local area too.

Speak soon,

Nicola xx