Dear Maurice
I read of your op and sadly your discomfort with interest. My attention though was especially caught by your comment that you were prescribed amitryptylline for a sleeping problem!

Well I took amitryptylline about 35 years ago when I had depression the very first time of about 5 separate occurences of several months each over a 25 year span. I am surprised they did not mention it was an anti-depressant when you mention in the same diary dates being depressed and then stopping taking it. It is a drug that makes you feel very heavy and slow and it does take a fair time to be effective. But it did work on the first 2 occasions I needed it.


Can't recall so far back, but I think my dose may have been higher than yours and they certainly do make you sleepy. But I also wonder if you were told certain foods like cheese/dairy products react with them and this may have created the hallucinations. This drug has many side effects including dry mouth the last thing you want during radiotherapy...... did I mention it also affects libido .... and like many anti-depressants it generally slurs your speech which may not be the best factor with all the mouth problems you have right now anyhow.

I am sure there are far more modern drugs that could be prescribed today for either sleep or depression problems.

It does seem to me that being depressed after such a traumatic operation would be par for the course though.

I have not had to have anti depressants for over 10 years. I think that is because my life settled down and I achieved many of my aims. But if you have had severe depression you never forget how debilitating it can be. What with your divorce proceedings and surgery for a life threatening illness you are on a very high stress level right now so hope you get some medical help for this before it plunges you into darker moments.

How is the depression now?

Hi Pauline, I was prescribed amitryptylline because I was having trouble with pain from the nerve endings on my chest and neck caused by removal of the main runs. Idid mention about them being for depression but was told that that was if taken in a higer dose. Small doses worked on the nerv endings. I am now on Garbapentin I started on one a day then two a day after two days working upto one three times a day. These tablets seem to keep on top of the pain although I do still get very tired. This symtom may ease after time. I do get depressed and my doctor has suggested I take antidepresents but I refused. I won't take antidepreesent tablets unless I really have to
Cheers Maurice

Maurice it was really great to read your blog again, not just for your news but for the fact that you feel lively enough to tap it out for us so that we know you are in as fine fettle as could be expected. It was amazing that you managed to with all that pain you are in off and on. The strides which have been made in pain relief are huge, thank God.
It is very strong of you that you have decided against anti-depressants. Personally, when my partner died two years ago (we had been together for 20 years, after my husband left me) I was really down. I had that sinking feeling in my tummy when I woke up etc etc and of course I had the listlessness and lack of energy and feeling like a s*** sandwich which cancer folk are prone to.
I wasn't strong. When my doctor suggested that I try Prozac. 20mg, 1 a day, I agreed to give it a try and have used it ever since. It has had no side-effects apart from the fact that I can cope and go around optimistically. My children say I am like the old happy-go-lucky mother again.
This despite the fact that I am as poor as a mouse of the church and can't drink, smoke or eat properly.
So I really think it is a great little tab!

I hope the pain recedes and recedes until it is just a nasty memory.
Regards Ishbel

By the way Maurice, these were really excellent pictures. You were shining brightly in them.
Ishbel

Maurice I have been given Tramadol and some other medication Oramorph, anyone know about these medications I am so tired all the time can hardly move around.
My teeth are in a state whats left of them
my right shoulder and arm throbbing
also says I have a trapped nerve in my left shoulder
and my neck is stiff!!!
Well I was suppposed to be going to Spain tomorrow but dont think I wll make it now!

Paul

Paul I think Oramorph is liquid morphine that you use for breakthrough pain to boost the tablets. I think I had it in addition to morphine tablets when my radiotherapy burns were really painful and bad.
It will certainly knock you out. Think I slept always for a few hours whenever I took it. In fact can't much recall doing anything. but lying in bed right then!!!
That throbbing shoulder pain is a nightmare. You have my sympathy. Had a lot of it last year, but it seems to have settled down I hope. Are you standing much or carrying shopping - that made mine worse. Just had to sit and rest - even sat down on the street one day where I was and dropped some soluble cocodamol into a water bottle and drink it right there. It was interesting just one young woman stopped and asked me if I was ok. It is excrutiating Paul and I am so sorry you are suffering like this.
Maurice I know it is your choice, but don't feel you have to resist the anti depressants. I know they are another toxin, but state of mind to get through this is also important. You need to be as up as you can be. Prozac is good as Ishbel says. I have never taken it, but somone I know is like a new person now she takes it. Sadly depression can run in families, but you really do have something to be depressed about right now with all that is going on. Even so if you do manage without I bet you come through a much stronger person. On the other hand suffer only so long before accepting that some anti depressant medication might help.
I thought the pictures were a great idea. We need to see more stage pictures on the web for diseases like this. I think seeing it can actually soften the fear for others.You look much more slender too.

This message has been edited. Last edited by: PaulineT,

Hi Ishbel, I know something of the stress related to relationships as my wife and I seperated 2 months before I was diagnosed with my illness . No one else was involved that I know of (certainly not on my part anyway) so I have been under some stress what with that and this illness. Still never mind I can hopefully overcome this without anti-depressants.

My, Maurice. With Pauline calling you 'slender' who needs Prozac!
Pauline--do I remember that oramorph. Sheer heaven. Just drifting away and the most beautiful dreams. I have a secret stash of it which I hope I will never ever need a\nd keep praying for the courage to chuck it down the sink.
I have just had the most distressing coughing and choking fit I can rememjber. It lasted about an hour and was kicked off by trying to eat a sponge and some of the crumbs stuck in my throat. They are still there and I am actually frightened to go to sleep in case I choke on the phlegm.
The moral of this story for me is to stick to things I can eat and be grateful for that. I just suddenly had a yearning for the old Victoria sponges my mother used to make, dug out her recipe book and hey presto. We had a sponge.
Now I am limp! Probably I did something wrong.
Woe is Ishbel

Yes Ishbel sponge can choke you. I hate having those choking bouts. I hope you are feeling better now. Just as you think hey my swallow is much better whan you choke on something tiny like a thread of celery in soup or tiny piece of dessicated coconut - I avoid coconut after a very nasty experience choking - this was a shame as it was one of my early taste recoveries!

I've found with cake that the crumb type is very important. The best cake for me NOW is not the regular 4 oz each sugar,flour,butter/marg and 2 eggs home made type, but the commercial cake that is pure whisked sponge. My favourites are blueberry muffins from Safeways which are very light and easy to dijest with lots of tea/fluid cake and also Marks and Spencer chocolate Roulade and cream sponge log at �1.99.

The latter does make me thirsty, because of the chocolate and its caffeine content, but I think you will find it very palatable.

I too also still have a brown glass bottle of Oramorph but wonder if after 2 years it is any good now. I know some drugs can reform into nastier compounds after a certain time. Anyone know?

And yes Maurice if you can overcome this without extra drugs for being down, you will feel more in charge umtimately. Having cancer does take away your control. The fact that you are divorcing may also have contrubuted to your doubts about having treatment such as the dissection. We all need something to want to live for and at diagnosis it is easy to fall into the trap of what is the point of treatment when you actually feel so sapped of energy by the toll of the cancer.

So now you must think in terms of a fresh, but different future where being alive is good. You will probably become famous internationally for your blog!!!

Hello all, Pauline, Ishbel, I too have an unopened bottle of Oramorph. The expiry date on mine is 04.ll.2004. I have had it since January 2003. I remember taking this with crushed ice - called morphine on the rocks. It was nectar of the gods.

Would you believe it, I had my first choking experience out at lunch the other day. It was while eating Carrot and Corriander soup, not something I thought one could choke on. It was horrible, and very frightening. Up until now all my choking has been in the privacy of my home. I think as time goes on, I have become a bit complacent. Although the consultant does say I will at some time in the future need my throat stretched again.

Maurice.... you look just amazing considering what you have been through.

Take care

Rosemary

Dear Rosemary, Pauline--Well imagine the three of us all having these brown glass bottles at the back of the medicine chest! I think Rosemary's description of having it with crushed ice is so-o-o-o funny that I am going to tell it to my specialist on Tuesday when I go for my next lengthy probe. Quake. He will chuckle and probe deeper.
And I also identify with choking on the tiny strings of celery. By the way another danger is the outside layer of leeks which I have kept because they are so healthy but wow they have nasty fibres. Carrot and coriander soup I am really surprised about because it has always seeemed so thin and I've stoped buying it because of that. How awful for you doing it publicly Rosemary.I'm always frightened that some great macho person is going to do that thing where they grab you round the waist from behind, and save your life and crush your bones at the same time.
How shattering to have in your obit that you'd died from leek and tattie soup going ther wrong way.
Seriously though it is so good to be able to swap tips and experiences like that. I am fascinated to hear about these buffins and am off on the search now. I mean muffins. It will be worth the 8-mle drive if they go down. And I'll definitely try the M and S roulade. The dog can have mother's perfect sponge!
Regards Ishbel.

ROFL - well once Maurice is burnt enough from his radiotherapy to get some Oramorph maybe we could have a binge altogether with some M and S chocolate roulade followed by a nap. It's very nap inducing stuff. Mine has no best before date, but I would be wary about using it as it was issued in Oct 2002 - can't think why then I still have it - just in case I suppose of that awful pain again.

Would you believe it Ishbel I have just had a choking fit with our evening meal. Now what I find hard is when it happens at the start of the meal as this did - At the end is ok. But at the start it kind of puts you off eating for the remainder of the meal. I am sure you knoiw what I mean.

As I said to my husband I dread this happening in public. At home I can cope when noone is watching, but out and thoughts of people watching are awful.

FWIW I prefer the roulade, but the muffins freeze well. I also eat DELIA'S carrot cake I make, WHICH IS MOIST - SLOWLY, VERY SLOWLY WITH ABOUT 3 CUPS OF EARL GREY. But for some reason true Victoria sponge just clogs with me.

Hi Pauline, sounds good about the binge but can I have digestives or fig bisks. I have to think of my figure you know (he-he )
Cheers Maurice

You know, reading of all the problems you people are having i.e. choking etc. I'm almost relieved that I can't take ANY solid food, even pills have to be soluble. So easy-peasy for me

This Oramorph sounds interesting stuff.

Seriously, I hope you'll all find some way of dealing with the choking issue.

Well I am loathe to admit it, but the Oramorph is damn good stuff. As long as I was able to have the Oramorph which you use in addition to morphine tablets I was able to control the burn pain which for me was very painful and grim as you have seen from the pics. But not everyone gets so burnt Maurice. I had six weeks and think you mentioned having 4 weeks. It was in weeks 5 and 6 that the burn deteriorated.

Just remember the burning is a gradual build up, so your pain tolerance actually builds along with it. With doing 20 days you might just be lucky and escape too much skin breakdown. I think my skin broke down about day 18 or 19 of treatment.

However although we are joking about Oramorph it is a serious drug and you can cope with no end of pain with it. But it does wear off. I used to take cocodamol with it in rotation. However liquid oramorph takes effect in about 5 minutes.

As I said it's a serious drug and I was mindful of this, measuring doses carefully ( although they did get higher and higher at one point) and recording all doses in a notebook. My chemist told my husband you build up tolerance to it the more you take it. I was determined I would control it not it me and soon weaned myself off it once the burns were healed.

My GP was astonished when I told him I had weaned myself off it over about a week before he had even suggested it. It's not difficult to do once the pain subsides and just as you up the dose wth pain you gradually lower it and miss odd doses. In the day this is fine, but at night you do want to sleep, but radiotehrapy leaves you tired anyway so sleeping is not a problem.

Your new figure is obviously delighting you. I can tell you it has been the main bonus for me and in some ways feel it has taken years off me physically. In other ways I feel the whole experience has been an aspect of that's life I could have skipped!

Pikeman we choke I think because sometimes we forget we have damaged swalling reflexes/tubes and get excited we can eat and just eat a bit too fast and wallop - a choking fit.

Does this main you can never ever, eat normally again Pikeman? I can imagine you could get used to it - I got used to the nasal tube.