Daily coping

[Pamela]

I am so thankful simply to be still alive, but coping with the effects of surgery and radiotherapy is not easy. I am surprised that I have so much on-going pain in all areas: face/neck, arm/wrist/hand, thigh. I am also frustrated with my physical restrictions and fatigue. I want to do lots of things but need to rest after doing basic things like household chores. I was originally concerned with facial disfigurement but that is the least of my concerns, allowing for the fact that my mouth no longer closes in the left corner, I need to drink with a straw, cover my mouth with a serviette when eating in company and can often dribble. Excessively dry mouth when sleeping is also a problem. I have a strong faith in God and know I don't walk this path alone.

[SILLY]

I am sorry to see that each day is a struggle for you. What looked like a little bad thing to you at the start turned out to be a big on-going thing . It's often the fact that treatments leave people with such a different life . Have you asked your doctor to prescribe some medication for the pain? If it is nerve pain there are specific medications for that . One I know is Lyrica. If your dry mouth is a problem there may be things to do which can help. I cannot offer suggestions there but I'm sure others here may have ideas.

[Pamela]

Hi Silly (not so silly; quite wise in fact ;-)) Thank you for your reply. I am on Panadol/Panadol Osteo/Panadol Forte at various times of day or night. The Forte lets me sleep well, which is a blessing. I have artificial saliva for dry mouth but it only helps for a short while. I have even stuck my mouth with tape at night but the air leaks in and my mouth and tongue end up like a piece of biltong until re-hydrated - first with warm water then the saliva replacement. I am 63 hoping to reach 100, so am not keen to take too much medication if at all possible. I often use a foot massager that acts like acupressure and totally numbs me out while using it, so I do get small bursts of relief. Good blessings for you, too. 🙂

[Sailor]

Dear Pamela There is no excuse for people to be in ongoing pain and the biggest risk is that if it is not dealt with the nerves become patterned into sending the pain signals and you end up with chronic neuropathic pain. Talk to you specialists and ask for referral to a pain specialist or a pain clinic (there is often a long wait for the latter). Go to the Painaustralia website for further information on pain management. Dry mouth is often a problem and manu of us have it. it is not only the awful feeling overnight, but there are serious sde effects as if you are not producing enough saliva then stuff is not being washed off your teeth and you can end up with dental problems. My dentist has me on a special high flouride tooth past and mouth wash which seems to protect my teeth, but doesn't do much for the dry mouth. I have discovered some stuff called biotene which comes in a variety of forms - gel, overnight gel, tooth past, mouthwash and chewing gum. I find that during the day it is OK as I can keep up the fluids and sip water while I work. The overnight gel is fantastic. If I wake up during the night with a biltong like tongue (great description - thanks!), I put some of this in my mouth and not only does it address the problem but it keeps working for three to four hours. Talk to your dentist about it, but it is available in pharmacies. Cheers Sailor O God, thy sea is so great, and my boat is so small. Breton Fishermen’s prayer

[SILLY]

I knew someone would have ideas for your problems. Sailor did . He always has an appropriate quote as well.

[Pamela]

Hi Sailor Thank you for that information. I will check out further pain control options. I thought this was just something I was going to have to learn to live with. I certainly don't want to end up with chronic neuropathic pain as I have seen my 90 year old Mum cope with Post Herpetic Neuralgia for 12 years and I don't relish going down that path. I am being careful with my teeth, cleaning after meals, rinsing after snacks, on doctor/dentist recommendation using ProRelief toothpaste, Listerine Smart Rinse (more flouride, no alcohol) and having 6 monthly topical flouride. Teeth damage is from radiotherapy as well as non-normal saliva. I am using Hamilton Aquae Dry Mouth Spray but will check out the Biotine products as well. Kind regards, Pamela ;-) We have an anchor that keeps the soul Steadfast and sure while the billows roll, Fastened to the Rock which cannot move, Grounded firm and deep in the Saviour's love.

[Pamela]

Hi Silly I am grateful to you both for taking the time to reply. Kind regards, Pamela 😉

[mg0080]

Hi Pamela, If its any consolation I am 'glad' to hear that someone else is struggling with the same as I have. No one told me just how absolutley exhausted I would be following treatment. My expectations were that I would bounce back and get back into all the usual things after a couple of weeks. NOT SO!! I have been SO tired (plus pain and dry mouth etc)that I can't seem to manage to do anything more than the bare essentials. Because I didn;t realise any of that was likely I have been extremely frustrated and some what depressed with how little I can do and so I have just begun looking for answers, only to discover that a lot of this was to be expected. I wish someone had told me sooner, it would have helped so much and I would have lowered my expectations of myself and thus would have coped better I think. I am sorry for you, I understand exactly what you are saying. One day at a time I guess. A friend recently reminded me to try to find the things I used to enjoy and try to 'revisit' them - at least then it gives you a bit of something nice to think about. Blessings, mg

[Pamela]

Hello mg Wow, what can I say! Your story is my story. Every time one of my doctors told me something new I would say 'why didn't you tell me this before?' I am the type of person who wants to know it all upfront. False expectations are a waste of time; very draining and frustrating. I would rather know the worst and if it's not that bad - great! I also wish the professionals would get together and exchange notes. My wrist was unmoving in a splint for 6 weeks. When it was taken off I could hardly move it, had no grip and much pain. After a few months of telling the doc's I was finally referred to a hand clinic where the physio said I should have been sent to them immediately the splint was off to stop the graft adhering to the tendons. But now the physio tells me exercise will separate the graft from the tendons, which to be seems to be totally illogical as well as impossible, not to mention mind-bogglingly painful, not only at the time of exercising but with on-going severity afterwards. I am thankful to be alive and don't regret the choice I made to have the treatment I have had, but I wish the follow-up had been different. I realise, too, while typing this that I have some anger about the situation that I have not been aware of, but now I can deal with it. When things need to be done and I am just too exhausted to even start, I tend to feel guilty at my 'laziness' - something else I need to deal with. In the middle of all this, I am very happy with much of my life and relationships and with wonderful, exciting plans for our future. I do appreciate your comments to me, mg. I have only been on this site a few days and am finding it very valuable. And you are so right - One Day At A Time! http://www.youtube.com/watch?v=IOsAEibcqJo

[SILLY]

I agree ,mgOO60 ,that if you had been informed of these side effects you would've coped better. It happened to me with surgery 2 years ago. I became very depressed with how I looked .Other things did not bother me much. I had counselling some months later and was much better after that. This aspect has been mentioned here before and some thought that if we were told of all probable side effects some would opt out of treatment . I know it would be possible . I think some doctors probably think that we'll get over it later so it's better not to scare people. I wish you well.And Pamela,too,of course.

[Pamela]

I suppose doctors must make a judgement call, but in my case it was - you will feel/get better in 3/6/9 months. Now at least I have finally been told I MAY be a little better in a couple of years but most of my problems will remain. I answered 'OK, I can live with that!' If things do improve - wonderful! If not, I won't have wasted any mental/emotional/physical effort waiting and hoping for something that may never happen. Just taking about this with people who understand but are not emotionally attached to me, is doing me the world of good ;-) Thanks & (((hugs)))

[Sailor]

Hi Everyone What MG0080, Silly and Pamela are talking about is care coordination. That the appropriate information is given to us, that the appropriate information precedes us to the next clinician, that the appropriate care is waiting for us, not happening because something goes wrong. I don't think it is too much to ask in this day of rapid communication. Cheers Sailor An incorrectly identified mark is a hazard, not an aid, to navigation. Alton B. Moody

[SILLY]

You have a good attitude ,Pamela.