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?
Original Post
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
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.
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 Confused . 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.
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 Razzer

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.
Hello all� Pauline is right Pikeman, it was just through sheer complacency that I choked when out at lunch. One look at my daughter, and she knew. I just took a deep breath, excused myself, and pardon the expression �boked� in the Ladies. Although it was scary, I came out looking refreshed, outwardly at least anyway.

Oramorph was prescribed to me after Radiotherapy, as the pain in my throat was excruciating. I took it only before bed, and when the pain was at its worst. Had no problem stopping at all. As I only had 20 sessions of Radiotherapy, my burns were not quite so severe, and coped with that.

I eat almost everything, but will not attempt a steak. I�m sure we all feel that after all our experiences, we could adapt to anything that�s thrown at us.

Take care,

Rosemary
Oh, I didn't go to Safeways in the end as there is a Tesco which is nearer and they had some blueberry muffins there. Really delicious and so LIGHT I couldn't believe it. Just a mini-choker with a bit of blueberry seed but now I know to beware. Haven't been to Marks for the roulade yet but got a Tesco Swiss roll which was totally awful.
Pikeman it must sound so petty to you, us females moaning about what we can't eat when you are purely liquid. I do hope that won't be for ever although you are probably used to it as long as it makes you feel fit enough.
One of my sons came over tonight when I was savouring my blueberry muffin, grace a Rosemary, said he hoped that wasn't all I was going to have for supper and then asked, interestingly, if I ever dreamed about food as I used to be such a keen experimenter and taster. The funny thinng is that I don't. But I dream about drink. Long, cool glasses of iced Baileys, and Riesling, and a nice single malt.
All of these are verboten because of my poor old tissues. So I wake up and have a slug of tea from the flask I have at the side of the bed.
And it really tastes good!
So there we are. But New Year's Eve is very dull... Ishbel
Yes the Marks roulade is made with fresh cream and a chocolate cream. You may need extra single cream to help it down. It is different from the muffins which I am so pleased suited you. It is nice to have cake and be able to eat it. See what I meant about the airy texture of the muffins. I also wish they skipped the bluberries. Have you tried stewed blackcurrants which are around now. This is IMO one of the very best flavours I can taste.

I am also a fan of FLOUR (not corn) tortillas which I lightly warm over a naked gas flame for seconds. Then fill these with mashed boiled egg, or cream cheese and chopped tomatoes or olive oil softly roasted vegetables like courgettes, red peppers and sliced red onions or a sweet version with chopped banana. Tomatoes are a fairly new eat for me. It took 18 months before I could stand the acidic taste again, but now love them they are so wet.

I have more or less given up on bread as it just sticks even with drinks. The tortillas feel like very normal food and also when out I can manage half an egg wrap which is similar as long as there is tea to down it.

Do try the tortillas as it is great to have a vehicle for foods.
No Ishbel I don't think either of you are being petty. In fact I'm quite envious that you have the courage to try the different concoctions, and that you are able to taste things.

The absence of solid food doesn't really bother me as I only have vestigial taste (sweet vs sour,salty or not). Given that I used absolutely love my food and that such enjoyment came mainly from the varied tastes and flavours enhanced by wine and knowing that I can't taste things - no it's definitely envy I feel.
Hi Pauline and Ishbel, do you think I will need this Oramorph during and after my radiotherapy. If so should I ask my GP for a perscription before I start with radiotherapy or do you have to get it from the hospital after the pain starts. Maybe Dr J might be able to answer this.
Maurice
Maurice you probably won't need the oramorph until the RT is over--I had 32 sessions and required it about a few days later. It might be a good idea to have some available foer when you need it as it is so excellent. And not habit-forming unless you like being in a Strawberry-Fields-Forever mood all the time and kissing the metre readers!
I am sorry Pikeman that you have no taste at all. That is realy rotten, especially when you liked good food. A good friend of mine has MS and this is the main side-effect she has had which she finds so distressing. I think Buddhism is the answer and then you will take as much delight in a bowl of lentils! I'm not one because I attack bluebottles and they don't kill anything. Oh well, you will just have to take vicarious pleasure in the rabbiting on about to choke or not to choke. I envy you your laidback fortitude.
Pauline--sorry for not attributing the airy muffins to you. I had another for breakfast (my breakfast being at 1pm), and along with my great big vitamin drink I feel like tackling the Friday shoppers to find my roulade. And these flour tortillas. I will be amazed if they work for me, but deighted. I picked some courgettes from the garden last night and will use them. I can't manage tomatoes. Sting too much. What I find I enjoy is a small amount of mild curry powder mixed through white sauces for blending with fish.
Kids' stuff say the Curry Club. But suits me now!
Regards Ishbel
No Maurice be guided by how you feel at the time with the pain relief.

The key here is that the pain type varies. In the beginning it is a raging sore dry throat that feels as if it is dehydrating and parched constantly. It feels as if water is being squeezed out and the tongue becomes like foreign object you are acutely aware of as if burnt by chillies. The best medicine for this is 5 or 6 pints of water a day!!! Start early in the day with water, drink 1 pint before radiotherapy. Carry water with you everywhere and get bottles of the stuff in now. I use Evian and would suggest you avoid Volvic because of the enhanced volcanic taste that gets super enhanced. Tap water chlorine taste is too noticeable when your taste buds go haywire. A dietician told me some people notice very little taste change for several weeks, but I tasted metal 10 minutes after first treatment.

Day 14 is the approx day for the sore throat from hell. There will also probably be ulcer sores on the gums. You will feel exceptionally sorry for yourself. So pamper yourself. Nystatin offers some comfort and remind the hospital that you need it. It is prescribed phrophylactically for oral thrush, but also relieves the gums a bit. Just make yourself as comfortable as possible by resting, drinking lots of fluid and being kind to yourself. Don't try to be superman and overdo things as the body need to draw on your reserves to rebuild cells. I think on the ACOR list some has said that it takes about 4500 calories a day for the body to cope rebuilding during radiotherapy. I always felt most lethargic about 2 hours after therapy.

At Cheletenham and probably other places their policy was to give you a basic pain reliever like paracetemol to begin with. Then about 10 days in as the pain became more uncomfortable and note the use of the word uncomfortable - you will be able to stand this pain, but it is not pleasant - I moved onto Solpadol. Then about 4 weeks in moved finally onto Morphine tablets as well as still taking the Solpadol (cocodamol). Solpadol is nicer to take than cocodamol as it dissolves better.

Oramorph every 4 hours was added to the night and morning morphine tablets as basically they don't know exactly the pain relief an individual needs, so they tell you to begin with say an additional 20 ml of Oramorph to the tablets then up it gradually until you can get relief. Some of this is probably related to pain threshold and also to body weight.

I was also given a nausea tablet """early""" on and needed to take Lanzaparozole for acid reflux. You can have the latter as a soluble drink - yuk or tablets that are large enough to choke you!
Your GPp probably won't be very involved in any of this until the radiotherapy is complete. But it might be worth asking for the lanzaparozole as the reflux is ghastly. Anyone else have this? I still have to take it now.

One other thing is that poor diet during this means constipation ..... Constipation is also an effect of morphine so you don't want that too soon and believe me that morphine can truly jam you up as can the solpadol with its codeine element!!! It may be worth getting liquid lactulose in from your GP or have the hospital provide it. Suppositories may become essential at some time!!!!

Some people do seem to manage to eat during it, but most land up living off milk and porridge and tinned rice pudding with added milk, yoghurt or similar things as I did - especially when it ends as the radotherapy works for some weeks after an dit is hard to relate to why you feel lousy when treatment is over. But expect to feel off colour for at least 3 or 4 weeks after.

I really hope this helps.
You can get through this Maurice. Just make sure you tell them when there are problems. So often we only mention something like constipation as an aside and they quickly prescribe an item.
See Maurice as Ishbel has said Morphine is a late drug introduction. They do not give it out until you really need it. I think we all liked it so much because a) it works and b) it takes you to noddy land and being ill in bed or slouched on the sofa gets pretty boring after weeks and weeks so sleeping the day away means you get one day nearer recovery.

Ishbel I can see the muffins have thrilled you. One of the things Marks does in their cafes (not seen it in the food section) is a lemon cream mousse filled sponge dessert which I can recommend.

Ishbel I like to slice up and boil a fennel with water and seasoning then reduce it with butter and then put a small piece of cod on top and the lid on for 4 or 5 minutes while it cooks softly not overdon. Then add some double cream and have with green beans and mashed potato. The strong aniseed flavour of the fennel is something I taste ok.
The flour tortillas work for me beacuse they are unleavened. Products with yeast seem to clog forever.

When exactly does your treatment start Maurice?

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