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

Gill, thanks. Am just experimenting with food as taste comes back. Had curry lat night. Ouch!

Hi,

Can't drink myself but my wife thinks their coffee is pretty good. But then, she chose me.

Good to see most people are going along fairly well.  As long as you end up beating this

thing it's OK.  Just be thankful.

Colin

Hi all,

Just popping on here to say hello and also that I started a fatigue course yesterday at the gym. I was referred by my speech therapist and I had an introduction last week but the trainer worked out a plan for me yesterday. I have to do a few mins on the treadmill, bike and some machine or other for building strength in my arms. I rather enjoyed it which surprised me! I did 15 mins of exercise this week and it will slowly increase over the 12 week course so we'll see where I am in a few weeks. I'm starting proper counselling next week at the Penny Brohn centre, I've had some counselling but not by a cancer specialist. I've also had three sessions of Creative Writing which is a course at the oncology centre for cancer patients. It's a one on one session and I can write about my cancer or anything I like. I mainly write about my cancer, it really helps as I have struggled a bit psychologically. I also attended a "Moving On" day last week with other local cancer patients. There were talks about fatigue, nutrition and also a psychologist. We then separated into groups and I met a few other head and neck cancer patients which was nice as I always feel most at ease these days when mixing with others who have been through it. There is talk of a support group starting up in Bristol which will be good. I've also ordered my MacMillan Coffee Morning pack ready for 26th Sept, I plan to organise a coffee morning to raise money. In between all of this I have been getting some rest in - honest!

Guzzle, good to know you are doing well and eating well. I think going back to work differs for everybody, having not been able to eat at all for three full months then three months of not eating much at all I have really struggled to gain weight and have suffered severe fatigue so I haven't returned to work yet but hope to soon. Like Debbie said, my concentration was affected too, as well as my memory. Chemo brain is what Gill called it I think!

Gill, how are you getting on with work now you are full time again? How did you know you were ready? Thanks for the soda tip, I will certainly try that, didn't think of soda.

Simon, how was your appointment with the doctor recently about night sweats? Are they still troubling you? We are indeed lucky compared to the US, my side effects are minimal really. My dry mouth is a pain during the summer but the gunky mouth in the mornings is a small price to pay along with lack of saliva and a few other things, It's the emotional side effects which will be hardest for me, I think we will all agree that cancer will always be a worry now. I'm still worried about the ulcer on my tongue, it's been four months now, it's still sore but during my check up this week my surgeon told me not to worry.

Jo - I have been thinking of you recently and I hope recovery is going well. How are you feeling? Have you been able to get up and about or are you still resting lots? Not doing too much I hope!

Speak soon everyone,

Nicola xx

Hi Nicola,

Really good to hear from you. It sounds as if there are lots of positive things going on in your life which should be of huge help during the coming months. I was interested to hear about your 'strength buillding'. I have lost a huge amount of body strength over the last year. I used to do 20 pull ups and 25 press ups every other day. I tried a couple of weeks ago and struggled to do 2 of each! I shall watch your progress with interest.

I will be inerested to hear how your fatigue course goes. Fatigue is a bit of a problem for me - not all the time but on a couple of days each week. Yesterday it was as if I was walking around with a huge heavy overcoat on all day.

Nightsweats are not as bad as they used to be so I'm hoping that they are going away. The appointment with the hormone doctor week was interesting and the blood test showed that my thyroid is not quite right. This might explain the nightsweats and may also be contributing to the fatigue issue. I've got to do a further blood test and also collect all my urine for 24 hours in two huge containers for testing (that'll be fun).

Had my first meal out this week and it went okay - chow mien and a spring roll. It was okay. I'm also planning to take my wife to a horse event near Swindon over the weekend - this will be the first night I've spent away from home for a year (apart from hospital stays obviously).

It's good that you are making positive progress, Nicola. I hope that the ulcer problem resolves itself soon. As you know, I had similar issues a few months ago and they eventually went away so I hoping they do for you too.

Good luck.

Simon XX

Hi Nicola,

Great to see your post. Wow! What a busy few weeks you've had. Sounds like you're really making great progress.

The creative writing course sounds interesting. I know from experience, that writing down my thoughts is a good way to ease 'mental congestion'

In the past (usually at my lowest points) I've written down my muddled thinking and dated it - it's been interesting to look back and see how far I've moved on!

I'm being a model patient haha! Still wearing the surgical stockings, still taking the prescribed drugs and still not lifting anything heavier than a kettle!

But seriously, I'm getting there! I'm able to do a bit more each day, though if it's something 'big' like a trip out with my kids (they took me out!) it does tend to wipe me out!

I've got a meeting with my colorectal surgeon next week to discuss my stoma reversal, then the following week, I meet the liver surgeon for my follow up appointment (to get the histology results too!) Everything should go a bit quiet then until October, when I have scans on my liver and lungs to monitor the pesky little lodger! Fingers crossed he hasn't moved any mates in!

Keep us updated with how your fatigue and counselling courses are going and you've inspired me to send off for the Macmillan coffee morning pack - think I might get school involved and make it big!

Take care, Nicola, hugs to you and everyone else on your thread,

Love Jo xx

Hi Simon,

I had night sweats early on but they went after some time ( i can't remember how long) I had regular blood tests and was

found to have a thyroid problem. I now take a 50ug each morning dissolved in water so it can go in my PEG.

I used to be quite strong and could do press-ups, dips etc. But having lost 2 stone, only half of which was fat I am somewhat

weaker. Being 78 might also have something to do with it.  I get my doctor to give me blood tests about every six months.

I find this reassuring.  It picked up that I had a prostate problem which was cured by a TURPS procedure.

I was able to watch this on the screen the surgeon was using. It was quite interesting.

Hi Gary, you seem to be doing very well. I bet you wear your pants outside you trousers.

Regards

Colin

Hi Nicola

You certainly sound busy but very upbeat.  I may well think about a course at the gym but very slowly at first.

Work is fine.  Started back full time this week and have been fine.  Boss is extremely surprised as he thought i would be part time for some months.  He totally underestimates me.

Part of the reason was money as I was only on statutory sick pay for April and May and the only reason we could meet the mortgage was because hubby was doing overtime.  that said i think I would have gone back at the same time anyway becuase I felt fine and getting bored at home.

Am due at hopsital on Tuesday for my four week check and to get result of PET Scan.  fingers crossed it will be all clear.

Gill

Hi Simon,

I had another thought.  Soon after i finished mt treatment I decided to build a log shed.

I couldn't use my right arm as they took my right pectoral and fed it up inside my mouth

to supply blood to my brain, which left my arm weak and painful. I strained my left arm

and gave myself tendonitis in the arm. It is still painful and weaker than the right after

6 years, so don't get too carried away with strenghth exercises to begin with.  Though a

lot older than you I was in good shape and strong prior to the cancer.

Regards

Colin

Just on boat to IOW. Weather glorious!

Hi Colin,

Thank you for that information regarding night sweats - that was very interesting and somewhat reassuring. Mine appear to be very slowly reducing, both in terms of frequency and severity. I'm being very careful not to count my chickens though. Apparently there is something not quite right with my thyroid gland as a result of the radiotherapy. I'm undergoing some more tests to get to the bottom of it whereupon they may put me on medication to deal with the issue. Sounds very similar to your situation.

I'm very impressed with the way that you've dealt with the various issues and challenges over the years. As you say, it does help that you started from a good place in terms of personal fitness, but nevertheless you've had a lot to deal with since then. I know that Nicola, I and many of the others on this thread have drawn lots of inspiration from your pragmatic determination.

Thanks again, Colin.

Simon.

Hi Colin,

Thank you for that information regarding night sweats - that was very interesting and somewhat reassuring. Mine appear to be very slowly reducing, both in terms of frequency and severity. I'm being very careful not to count my chickens though. Apparently there is something not quite right with my thyroid gland as a result of the radiotherapy. I'm undergoing some more tests to get to the bottom of it whereupon they may put me on medication to deal with the issue. Sounds very similar to your situation.

I'm very impressed with the way that you've dealt with the various issues and challenges over the years. As you say, it does help that you started from a good place in terms of personal fitness, but nevertheless you've had a lot to deal with since then. I know that Nicola, I and many of the others on this thread have drawn lots of inspiration from your pragmatic determination.

Thanks again, Colin.

Simon.

Simon, well said. Couldn't agree more. Nicola, all the positive things you are doing are great!

Hi Simon,Gary

Thankyou for those kind words, but in all honesty I think being old makes a huge difference.

I think if it had happened to me in my 30's I would have been considerably less pragmatic.

When I was told I had a fifty fifty chance of more than six months left I was amazed how

calmly I took it.  I suppose as you get fairly old you know it won't go on for ever.

I live in beautiful countryside and when I have my daily exercise walk I look at the view

and feel very lucky to be here.

I have great sympathy for all you younger people like yourself,Nicola and Gary with what you

have to face. Its not knowing whats ahead of you as you battle through cancer that is the

most frightening.

Regards to all

Colin  

Hello Friends

Some time since I've logged in and caught up with you all.  It sounds like everyone is moving on in leaps and bounds which is fantastic.  Simon, I share your feelings - spoke to a neighbour this afternoon (inviting me to her annual girlie BBQ in a couple of weeks) of a 23 year old relative of hers just diagnosed with lymphoma; how I hate to hear of youngsters having to face all this *** so early in their lives.  But she is tackling her treatment bravely and fingers crossed all will be well with her too.

Quick update from me.  Finally got rid of the chest infections after more sputum samples and a third course of a different antibiotic to fight a different and rarer bacteria lurking in my throat, so have been feeling much better this past week.  Also had a few nights break in Northumberland - my first time away from home since being ill.  My husband always eats a big breakfast and skips lunch, while I struggle with breakfast and need something to keep me going at lunchtime.  Long story but on the drive down to Newbiggin-on-the-sea we attempted to stop in both Berwick and Morpeth.  Grumpy old man/woman driving/navigating syndrome kicked in - new parking disk arrangements in said towns riled grumpy old man so he ignored hungry grumpy old woman and kept on to our destination when no satnav made grumpy situation even worse (how hard can it be you just turn left off the A1 and head for the coast?!).  I really had an appetite by the time we got there and enjoyed a huge amount of fish and chips compared to what I normally eat nowadays (as always washed down with large quantities of milk)!

The not so good news is that my 88 year old Mum has put her artificial hip out again (3 months since last time) and was admitted to hospital yesterday. Last time she ended up being kept in for nearly 4 weeks and missed her grandson's wedding.  This time Dad's 90th birthday tea-party is on the horizon so fingers crossed we'll get her home before then.

I had my monthly hospital check-up yesterday (6 months since end of treatment - now that feels like a real milestone) and pleased to report they are very happy with me.  Apart from the early morning mucus clearance and swallowing difficulty (it eases off throughout the morning) I'm definitely feeling much more like my old self.

Lots of love to all.  Keep well please!

Irene x

hi Irene , great to hear you are doing well!

Hi Colin, sorry just realised I got you and Simon muddled up in my last post.  It was your sentiments I meant to echo, re hating to hear about youngsters facing cancer so early in their lives.  Simon, that's not to say I don't agree with all your pearls of wisdom and I'm sure you would also share this opinion anyway! 

Thanks Gary, hope things continue to go well with you too.

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