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

Sl glad that the PEG is finally gone (if not quite forgotten).  Having put up with it for so long it will obviously take a little time to get used to not having.  Also glad that is was very simple.  Do not blame if you you did sleep after having gone through so much.  Such a shame the doctor was miserable and unfriendly - may be you got him on a bad day.  That said even on a bad day you can stil be friendly.

Just a suggestion with the Rose wine.  Instead of lemonade why not try soda water.  It is not quite as fizzy or sweet as lemonade.  I do hope the taste gets back to something close to normal soon.

Did my first full day at work and was glad that my daughter who is home fro Uni did the cooking even though she is working full time.  All being well I will be back full time next week which surpised everyone but me.  My boss kept chekcing up on me this afternoon to make sure I was ok. 

Best wishes and virtual hugs.

Gill

Chums, forgot to say loved liver story. Actually had liver and onion gravy a few days ago. It didn't taste ofull {spelling!). It tasted like it did before treatment!

Hi Nicola,

I'm really pleased that the PEG removal went well. Funny but the doctor that took mine out was a bit of a miserable git as well. Maybe it's an unpopular task....

You must be on the up now - no tube and slowly but surely making progress. What a long ride it's been. I'd like to say that soon it'll just be a dim and distant memory but I think the truth is that it will always be with us. Although the lingering side-effects will slowly diminish with time, one or two are likely to linger in one form or another. I guess that's our new normality and we must just be thankful that things didn't turn out worse for us. I monitor a couple of USA head and neck cancer groups and I do notice that sufferers in the States seem to have an even rougher time than we in the UK tend to - a bit of a generalisation I know but when you dip into their message boards you quickly find some really harrowing stories concerning people who on the face of it would appear to be very similar to ourselves in terms of diagnosis. Some of the the side-effects I experienced in the few weeks after treatment seem to be accepted as the new 'normality' for many H&N cancer survivors Stateside. Maybe we should count our lucky stars and be thankful for the good old NHS.

Guzzle's progress is nothing short of amazing. During my last week of treatment and for a while thereafter I could barely walk, never mind ride a bike. I remember describing you, Nicola, as superhuman some time back - Guzzle probably wears a Superman outfit when he's riding his bike!

Good luck to everyone.

Simon xx

Simon. Ive Ive just been lucky so far. Any experiences about return to work? I look at CSN in the states. A lot of people spend energy dealing with bills and insurance companies!

Hi Guzzle,

I returned to work in February having been off sick since July 2013. This was significant for me because I had never been off sick before (apart from when I fancied a day off of school in 1976).

I initially started working from home via a computer link-up with work - I could review papers, dial into meetings etc. I then returned to work on 4 or 5 hours per day. This was fairly exhausting and I did still have several health issues. I try to do all of my eating at home if possible. I am conscious of the need to clean my teeth quickly after eating (due to the lack of saliva), and this can sometimes be awkward or inconvenient at work. Also, I like to take my time over preparing and eating and it is far simpler to do this at home. I am now up to 8 hours but I am very careful not to go over this - I am still suffering from fatigue but this is slowly improving.

My throat still gives me some problems so I refrain from chairing lengthy meetings or giving presentations where I have to talk a lot.

Work have been really good and I have been able to adjust my working hours to my needs - I tend to be in the office by around 6am and then aim to leave at about 2pm. This enables me to have breakfast before I leave (porridge) and a light snack (noodles or similar) when I get home. I then have a largish main meal in the evening.

I try to ensure that I keep a bottle of water with me. I also keep some suitable food at work in case I need it (the canteen would struggle to serve me stuff that would be suitable - i.e. without spices or black pepper, and soft or runny). My bottom drawer has a supply of pot noodles, instant porridge and the good old NHS Fresubin food.

Hope this helps mate.

Simon.

Simon, thanks mate. Im targetting eng aug on staged return. Gonna  book a week or 2 at a work canvalescent centre which I can use to build strength and fitness. I can eat most things although not all taste good. Had bigmac today. They were awful before though. Walked 8.5 miles to Liverpool and just needed to eat something! How did you function mentally i.e. With concentration etc. Heard a lot about problems post treatment?

Hi Guzzle,

Not too bad mentally although the fatigue was a real issue at first. I found that work helped to move my focus away from my condition which was good. I did have a lot of different symptoms and side-effects and if you're not careful you find yourself thinking about these constantly.

There were occasions when I felt a type of depression creeping in, even fairly soon after the first all clear. It was a strange feeling, almost like the main fight is over so what now? Hard to explain really.

Simon.

Hi guzzle

I suffered with poor concentration and memory at first. I struggled with remembering words and would stop mid sentence but fortunately it only lasted a few months which was lucky because I work as a lawyer so need words! I stopped ringing people because of it and just dealt with everything by letter/email. There are ways round any side effect!

I was worried it was the brain tumour but then I heard about "chemo brain" and it is a side effect of chemotherapy.

I can't believe you're tucking into a Big Mac already!

Debbie

Deb theyvtasted awful before

Guzzle

Have to say it serves you right for eating a Big Mac.  Cannot remeber the last time I called in to a McDonalds.  It has got to be at least 7 years ago!

I am amazed at how much you can do.  I am fairly flow at going upstairs (for four and a half months I cam down the stairs in the morning and went up again in the evening.  As husband was asleep during the day (working nights) and we have a cloakroom on the ground floor there was no need for me to go upstairs.  Have done a couple of full days at work and am fine although a bit achy in the mornings but fine once I get going.

Chemo brain is a definite "thing" so do not be surprised if you forget things or lose your train of thought - mind you many people do that without chemo brain.

Take it slow and see how it goes.

Very best wishes.

Gill

Guzzle

Have to say it serves you right for eating a Big Mac.  Cannot remeber the last time I called in to a McDonalds.  It has got to be at least 7 years ago!

I am amazed at how much you can do.  I am fairly flow at going upstairs (for four and a half months I cam down the stairs in the morning and went up again in the evening.  As husband was asleep during the day (working nights) and we have a cloakroom on the ground floor there was no need for me to go upstairs.  Have done a couple of full days at work and am fine although a bit achy in the mornings but fine once I get going.

Chemo brain is a definite "thing" so do not be surprised if you forget things or lose your train of thought - mind you many people do that without chemo brain.

Take it slow and see how it goes.

Very best wishes.

Gill

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.