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,

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

Nic. Just stuck with normal insurance with an exclusion for this condition / e111. Think Simons done same. I am looking at Zip world in Wales for next adrenaline rush. Looks awesome. Malta was lovely. V. Child friendly. V. Hot! Lots to see (mdina lovely).

what about pre Xmas drinks somewhere? Is midlands ish central for everyone? Shrewsbury/ludlow? IM happy to spun down to London equally. Let me know who apart from me and nic fancy it.

All the best, Gary

Hi Gary,

I like the idea of a drink together it would be nice to put faces to names. Unfortiunately 'her indoors' and I are off to Florida

mid December for winter sunshine. Suprisingly (to us anyway) the winters here in Southern France can be long and cold.

It is good to see that everyone is progressing well on the road to recovery.  Nicola looks very good and I am jealous of her

rebuilt tongue   I don't know why they didn't do mine. Maybe because they carved up my chest to use my right pectoral

in my mouth as a blood supply to what little brain I have left.

Just been for my morning jog. After an hour heart is back to around 54bpm so not too bad for an old git.

The zip wire sounds like fun, I must put it on my bucket list.

Regards to all.

Colin

Colin , you jogged! What a guy! Just been over long mynd in Shropshire on bike which was lovely. You and Mrs enjoy Florida. If you ever get back to UK you know where I am! Best Wishes, Gary

Hi Gary,

We are only going to Florida for three momnths.  We go every winter. Only being able to eat via my peg makes

holidays awkward. In Florida I order food bags and tubes for the 3 months and its like being at home.

It costs about $1300 which the French unfortunately don't cover. ( I get my food etc delivered free, monthly here)

Just to make you jealous  - I had a blood test on Tuesday at about 9am. At 3pm  went online and had the results (All good)

Regards

Colin

Hi Nicola and gang,

Just back from Spain - good holiday and it was nice to have a break from the normal routine.

We tried eating out on a few occasions but it was difficult to ensure that the food was spice free and soft etc. Neither of us speak Spanish and we were not in a resort where the locals tend to speak English so I played safe with omelettes. However, we were prepared for this and my wonderful wife made a batch of cheese sauce on day one and we ate mostly at the villa. Heat was not a problem and I even managed a very sort run early in the morning. Fatigue and sore mouth still a problem but these are pretty well manageable.

Nicola, Vatch seems to be having similar ulcer problems to us - I've put a comment on his thread to try and reassure him. I can remember how worrying such things are.

Hope that everyone is doing well. Colin, three months in Florida!  Lucky blighter!

Simon XX

Hi Nicola and gang,

Just back from Spain - good holiday and it was nice to have a break from the normal routine.

We tried eating out on a few occasions but it was difficult to ensure that the food was spice free and soft etc. Neither of us speak Spanish and we were not in a resort where the locals tend to speak English so I played safe with omelettes. However, we were prepared for this and my wonderful wife made a batch of cheese sauce on day one and we ate mostly at the villa. Heat was not a problem and I even managed a very sort run early in the morning. Fatigue and sore mouth still a problem but these are pretty well manageable.

Nicola, Vatch seems to be having similar ulcer problems to us - I've put a comment on his thread to try and reassure him. I can remember how worrying such things are.

Hope that everyone is doing well. Colin, three months in Florida!  Lucky blighter!

Simon XX

Simon, so pleased yo had a nice hol and well done on the run. This is is the toughest excercise to get back to . Think because its load bearing. Have a look at the thread about getting together for a drink lunch. Maybe when Vatch up to it. Colin enjoy!

Hi Gary,

Is the meeting up thread elsewhere?    I would be interested if it is before we go to the US.

We have not booked yet, but normally go about mid-December to avoid the bad weather

for the drive through France. We fly from Gatwick.

When in the UK we stay with my son at Ampthill, so the Midlands would not be too far to go.

Colin

Colin thought it was earlier on this one. Nicolas in! Kids could be good. Was talking nearer Xmas?

Hi Gary,

I see the thread. I thought perhaps there was more elsewhere, silly me..  Perhaps if it is a success there wil be more

If the meeting up happens I hope you will take some pictues of the group that attend.

I hadn.t thought about it but I suppose that cycling is a gentler exercise than jogging. Perhaps

I will jog one day and cycle the next. It does become easier to damage muscles as you get older

and cycling is good exercise without the impact of running.

I shall be in Brighton this weekend. My son is treating my wife and I to a James Taylor concert

on Saturday. Its for my birthday or Christmas - I can't remember which. He is a bit tardy with these things.

Regards to all

Colin

Colin, enjoy the concert buddy. Hopefully we will  get the chance to meet in future. You are an interesting chap! Any of the team I am Gary jones on fb with a picture of an iron man on a beach. If you want send a request explaining who you are. Cheers. Gary

Hi Gary,

The concert was great!  I can't believe how good he is at 67.  I'm not sure about Brighton.

The coast road there was a traffic jam all day. Even on Sunday, and prices for hotels and

meals somewhat expensive.

Its nice to think that almost all the people on this thread will be back to good health, relatively

speaking by christmas.

Next week we go to a book sale held by the local cancer support group. They themselves are well supported

by the ex-pat community. I am not involved as I am hard to understand .

Colin

Colin hes a legend like you mate! Get up to Scouseland kidder! Hotels not cheap any more mind you!

Hi all,

Just wanted to pop on here to say hello and that I'm now up to 20.5 mins of exercise per week now during my Energise course to help fatigue! Chuffed with that! I had a birthday recently and managed to eat out a couple of times to celebrate and have a few drinks which definitely helped the weight increase but weight seems to have gone back down again now. Still stuck at six stone 1. I was eating something recently (can't remember what it was) and realised I was eating something that I never would have dreamed of eating only a couple of months ago. I do have a question though....if people ask any of you "what can you eat?" or "what can't you eat?" Or "can you eat normally now?" (these questions have been the bane of my life for a few months now) what do you say? How do you answer? I find it difficult to sum up my dietary requirements without going into great detail, which sometimes I don't want to do. For example, I can't eat anything spicy or dry or 'bitty' as in rice, sweet corn, cereal, and everything also has to be the right consistency so I find it difficult to answer such questions.

Simon, so pleased you managed to enjoy a holiday, it must have boosted your confidence, I know my confidence has taken a bashing and I feel anxious about going places since being ill. I tried the deli boxes, I enjoyed the cheesy pasta one. Also got a blender recently and have been making fruit smoothies which is great as I can't manage to eat any fruit now. I must make some cheese sauce too, it goes with so many things, well done to your wife for doing that for you. Did you have any ice creams on your holiday? I can't have ice cream, just can't taste it anymore which is annoying. I've commented on Vatch's thread too, he would have for the results by now, I hope all is well for him.

Guzzle, you always sound so chirpy, glad to hear all ok with you. I did search you on FB but couldn't find you there were too many of you! Lucky Colin getting away for the winter, but he deserves it after all he's been through. How have you found being back at work? I start next week.

Another question for you all...have any of you suffered with hearing loss since the radiotherapy? Although my radiotherapy was to my mouth and throat/neck, my right ear would have been in the firing line and I was warned of tinnitus, which I was lucky enough to escape, but a hearing test today revealed quite a degree of hearing loss compared to before the cancer treatment. I now have to see my GP with the results who I was told may refer me to ENT. I laughed and said I am already well known at the ENT clinic!

Speak soon,

Nicola xx

Hi Nicola

Good to hear that you are enjoying the fitness stuff although at 6 stone you had better be careful on thosw windy days

Im going backwards and forwards with food at the moment ... its not helped by having the biopsy on my tongue..... but I am back on the blasted PEG as i just can not get anything down at the mo ... too sore ... I m hungry, starving infact, but for what i don't know ... oh i know i would love a cheese and pickle sandwich, but i know i would not be able to eat it ... and thats beginning to annoy me

no news from my biopsy yet either

as for hearing my hearing has got more sensitive, but i also get tinitus in my right ear, the right hand side of my face took most of the radio therapy

But i have one question for you all ... i have really bad paind on the right side of my face, i though i had an infection, but when i mentioned it on my review this week, the told me it was the nerve endings regenerating themselves ... made me feel like Dr Who .... did any of you have such pains

Nic try to pm your name and Ill search. Gary Jones is a common name which is appropriate really for a common chap. Glad you and Vatch on mend. I can eat anything except very spicy. Been lucky thus far. Had scan results. Only 3/4 had downloaded and that bit looked OK. Quack noted chest and shoulder muscle getting back.Still 13 st 7 from 15 5. Cant run as far or fast yet but up to 10 k. Good on a bike as feel light as a feather. Done my UDT refresher last week and could tell that whilst functional still weaker than before. But still here - lite version. Tough to put weight on run most days, cycle weekends, eat like horse. Avoid weights as I dud have tendency to bulk up but may go back. At Harrogate treatment centre w/c 3 nov for another week intensive fuzz, gym, cycling, bleep tests, comp therapies, protein and possibly guiness. There. Mon ti Fri so if anyone fancies trip to Harrogate Ill buy you a beer!

.                yours, Scouse Weakling.