Hi Everybody

Just thought I would update you on my progress.
I have now started week 3 of radiotherapy, and so far so good.

I do have a very sore throat, coffee hurts and cold juice hurts. I feel a bit tired when I come home but that could be due to the travelling.
Two days last week I had awful nausea but it passed. I still have my taste and my eating is ok compared to what it was after surgery, so I am really chuffed with myself as I am almost at the half way mark.

I know it will get worse, as I have read alot of your stories so I am prepared, but for now I am coping well.

Love
Tracey

Hi Tracey,
I'm half done treatments as well. I'm on peg feeding 100% lately because the radiation has prompted swelling which makes swallowing very difficult. I can barely sip and swallow water. I've asked my doctor for anti-inflammation pills but he's not going for it. I'm to go to Emergency if it swells enough to affect my breathing. Conforting thought eh?

My mouth is very dry, especially at night. I wake up all the time and if I get 2 hours in a row, I consider that a bonus. Thick saliva is a problem - uncomfortable to have to "sweep" it out all the time. In the last 2 weeks, I've had bouts of nausea and vomiting - one of the nurses says it's from the thick saliva that I've swallowed. I guess it's a good thing I can't swallow then.

My appetite has diminished and that plus the vomiting, I've lost some weight that the dietician is not happy about. She's changed my formula to Nutren 2.0 Eat less, gain more. Same muck. I've also changed my flouride to a non-flavoured variety. Some of these products: Biotene, MoiStir, etc. trigger heartburn.

What else...getting a bit red on the chest. Not too bad.

No mouth sores yet although the doctor says they're certainly coming (killjoy). I did have burns because of a gold bridge that was scattering the 'rays'. I wore my bottom flouride tray and the burns have healed within the week. I was a bit perturbed the doctor didn't anticipate the burns.

Finally, I've managed to get physio and speech therapy scheduled. I would have preferred it to be before the middle of treatment though.

The cancer clinic is 20 minutes walk away (I'm staying at my sister's apartment for the duration). That's my daily exercise and I hope to continue until this is over. Some days are pretty cold though! I'm so bundled up all you can see are my eyes.

Take care

Myrna

I am so sorry you are having it so bad Myrna
I am now having alot of pain in my throat and swallowing is very sore, my neck is becoming redder and very itchy, I suppose it had to happen

Keep in touch and let me know how this week goes, I hope you feel better.
Thinking of you
Love
Tracey

Hi Myrna and Tracy, hang on in there you two all the symptoms you are suffering are only temprorary. I could'nt believe how much thick mucus/saliva there was and it made me vomit every day-doesn't help with weight loss! But it WILL PASS. Tried all sorts of mouthwashes best seemed to be salt water if you can bare it. Next hydrogen peroxide but need a script. Both help reduce mucus production even tho I never managed the art of gargling.
Slap on the aqueous cream keep taking the painkillers and wrap up warm!
Take care Sue

Today brings me to the end of week 4, what can I say? The first three weeks were pretty non-eventful, well this week has certainly made up for it.
I have the throat from hell everything hurts, eating (if you can call it eating!) drinking, swallowing even breathing
I was prescribed oramorph on Monday, but today they increased the dose. I have to gargle with solpadol every 4hrs and take my oramorph. I seem to need it every 2-3 hrs. I don't sleep for any longer than 3-4 hours and have now noticed I have quite a lot of mucus in my throat.
The hospital have a grading of 0-4 for ailments, my neck was 1 which is very good as I don't have any problems other than it gets a bit itchy and hot, but the aqueus cream helps. My throat on the other hand was given a 3 and they have told me I will have to have a feeding tube I have told them I will persevere for now, the way I see it neither food or liquid makes the pain worse, coz it is painfull ALL THE TIME, so I don't see how this will help.
I know I am being stubborn (I ALWAYS HAVE BEEN).
We came to a compromise, they have given me till wednesday to see how I get on.

I just keep thinking I am almost at the end of treatment, not long to go now, of course I know that I won't be better all of a sudden, but it is a big step forward.

Lots of love
Tracey

Tracey know how you feel about feeding tube, I had mine fitted weeks before treatment started as they anticipated feeding problems, I resisted using it til the very end but having said that it definitely saved my life. Its very easy to feed and keep weight up with tube plus added bonus that all horrible tasting medicine can be shoved down it! Even tho I'm eating quite a bit now I still use it to take my painkillers so I don't have to taste them! Excellent for foul tasting antibiotics!
Keep going your nearly there. thinking of you
email me if you want sr_platt@hotmail.com

Hello Tracey, You've done fantastic up to now and you certainly have the right attitude to cope with the rest. Maybe the hospital want to fit the tube as a precaution, just in case you don't manage to eat enough and as your immune system is affected by the treatment you need all the help you can get. Much as I didn't want a peg fitted (I had no choice) it eventually became my "friend". Everything that Sue says I agree with. Plus the Jevity gave me the longest, strongest nails I have ever had!! Brenda x

Hello Tracey and Myrna
Hang in there girls. Keep thinking if you feel this bad then the cancer cells feel worse. Pain is hard to control I agree. Can you take the solpadol between the Morphine and spread it out a bit Tracey. If it's any comfort I think that's how it was for most of us. the medication just about lasts as the timing is up. You are probably both beginning to see how hard it is to describe what happens to you during the treatment.
FWIW I wish I had had nasal tube in before I got so low I could not even take water, so don'resist it, as if you can maintain the weight you will not be so frail and recover faster.

Myrna if you have heartburn it's very likley due to oesophagus damage and you ought to repeatedly tell them so they give you lanzaparozole (XOTON) as either tablets or powders to put in a drink. Also with all the codeine morphine you are now taking, mention any constipation so you can get some medication for it. That stuff sure bungs everyone up.

You can both do this.

Hi Pauline, I was wondering where you were, not heard from you for a while.
I have been having heartburn too and have OMEPRAZOLE to take every day, its true the medication runs out just in time for the next dose, I have noticed I am not lasting the 4 hours with the morphine, I am now on a longer lasting dosage (12Hrs) but I can take the 5ml in between aswell as the solpadol, I am constantly 'drugged' up.I struggle to keep my eyes open .
The constipation has been a problem, but again I have medication for that! my kitchen looks like a pharmacy!!
This morning when I woke I felt as though I was choking, I had so much mucus trapped in my throat, I can't spit it out because it is not in my mouth but further down, so I have to swallow, the doctor told me this is from the blisters in my throat (yuck!!)very painful.

9 more treatments left

lot of love
TRACEY

Tracey I tried the 5ml breakthrough Oramorph and it was good stuff, but not enough even from the start of self dosing. At the height of pain from weeks say 5 to weeks 8/9 I was taking about 20ml liquid doses (the full little cup) and also a morning and night dose in tablet form plus the solpadol and also ibuprofen which I take for another problem.

You must tell them you are still in pain.
I thought the whole point of the self medication was them to give you some leeway with upping the Oramorph yourself until it felt right and you gained reasonable comfort. My docs also adjusted the tablet strength too. I think they just can't really tell how much you need until you tell them you need more. Although the time of the burn breakdown and weeping of the skin is when you really need it most.

You can do this. It is process you have to go through.

I still have heartburn about 7pm at night if I forget the lanzaparozole. Docs say I'll always have to take it. I'm sure it's the same for many here. Every so often I forget so I always keep two in my handbag. I've found it's best taken by midday rather than at night.

I did wean myself off oramorph rapidly which I suppose the higher the dose the easier that is to do and once you don't have the pain if you are a person with will power you just decide to do it. I still have a packet of it which is a kind of crutch, but any pain I have now I cope with by using prescription solpadol and ahigher dose of Ibuprofen. At one point I foolishly bought cocodamol at the chemist only to be told by my GP that the codeine content is much higher in prescription quality so it's best to get it via the docs. Also I try not take more than 2 or 3 doses ina day rather than the maximum 4 doses as it is dangerous stuff and easy to misjudge what you take.

Pain is a terrible thing during radiotherapy and for people in late stages. When I look back on the burn pain I think how did Simon Weston ever cope when all his body was so burnt. The worst bit is when the pain relief wears off and you feel so on edge and just don't know what to do with yourself whilst waiting for the time to pass for the next dose. Which is so ironic when time is so precious to us and we want it to last longer.

LOL I can't type any more as that bloody shooting shoulder pain is back. Off for some solpadol which reminds me - fybogel!!!!

Just remembered that it may be worth you seeing your GP before you get even more unwell, and mentioning you will need morphine once discharged from the radiotherapy. You don't want to be stuck without it, so getting it on record may save aggro later.

I'd also recommend asking for district nurse vists if you feel lousy after discharge from the rad treatment if you are a distance from the hospital as I was. I was in bed for weeks after and traipsing to the docs daily to the nurse is the last thing you'll feel like doing.

Now is the time to be really kind to yourself and rest up.

Hi Pauline
Last night has been my worst night for pain I haven't felt pain like it not even after surgery!
At bedtime I was to take a double dose of oramorph aswell as my 12hourly doseage and the paracetamol now that should have knocked me out, but I was still up at 2am, than 4, then 5.15, sure I feel woozy but the PAIN is still there.
I have written down how often I needed pain relief yesterday and I will show them to-day. Fingers crossed they get it sorted.
Like you I don't think the oramorph is strong enough, maybe they will give me a stronger medication.

I will keep you informed

Tracey

My husband did check with the pharmacy about the amount of morphine I took and was told the body adapts to it and can tolerate increasing amounts as long as there is pain. It seems you can take quite a bit of it if the build up is gradual. I can only assume that those who had injections from Dr Shipman had pretty high doses and were not already having the stuff.

I think keeping a record of pain level from 1 to 10 is a good idea. At severe burn stage for about a week I was at 11 or even 13 out of 10. You are right to keep records of what you take as is only putting out the tablets/medicicne you need for one day at a time. Those of us who can take morphine and tolerate it are quite lucky think, as it is a good pain relief. Some people cannot take it.

There comes up point where the discomfort is such that it all merges into one horrid uncomfortable pain. You may well be at that point. You may find it easier to sleep propped sitting up with pillow support for a month or three whilst you have the mucus and phlegm which can sometimes feel as if you are choking.

How is you new figure coming along??? You'll be shopping on line for new clothes soon. net aporter and m and s and next are all great for easy buys.

To-day I was 4 hours at the hospital, had my treatment on time the rest of it was trying to get this medication sorted out and then waiting at the pharmacy for it

They have decided to take me off morphine all together as it is obviously not working for me. Now I have to take 30mg of oxycontin twice a day this is twice as strong as morphine! also 10mg of oxynorm inbetween I have to still carry on with the solpadol 4 times a day and I now have oxetacane to take 20 mins before food (I am still trying to avoid the dreaded NG tube).
My appetite has gone completely now, I think it may be a combination of fear (because I know it will hurt when I eat) also I am feeling sick most days now, which they seem to think is coming from the blisters bursting and the mucus in my throat (what a lovely combination!!)
I came home with a nebulisor to-day this is to help break up the mucus and this is to be used 4 times a day.

The figure is coming along nicely, in time for my holidays in June, I will be ready for a nice relaxing time by then.

Love
Tracey xx

The main thing Tracey is that your pain is controlled for you. It doesn't really mattter how any of us had ours controlled. All that matters is that your docs are aware that you as an individual are in extreme pain and need your treatment tailored to you. I really think keeping a pain diary is very very useful when having this treatment and in the immediate weeks after. I was able to look back on my diary and see that suddenly I was putting down 7 out of 10 as opposed to 11 out of 10 and then going to 6. It gives amental boost to know that yousee an improvment. We had about 12 days of the burn pictures my husband took developed instantly one day and that was kind of horrifying yet at the same time amental boost as I could see that yay the burn was receding and going pink from deep red.

I'd really forgotten about the nausea and they can give you a high dose Maxolon Metoclopramide hydrochloride) or similar for that. I'd forgotten about feeling sick all the time even with drinking the water. There is a point when just about everything happens. For me the heartburn was worse than feeling sick. That's notavery nice symtom for anyone even without treatment. The main thing is that you tell them of changes.

I agree it was a real pain hanging around the hospital waiting to be seen to get medication and when you least feel like it. On several occasions we were out of the house more than 5 hours. There were often very quick days, but just as often delays such as when a machine was broken or aconsulatnt appointmentwas needed. It can also take a bit longer in the lastweek if you have extra electron treatment when you may have to use two differnt machine rooms.

I expect by now you are both lying down a fair bit when you get in. Be kind to yourselves both of you.