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!