My sister, aged 57, was diagnosed in March this year with inoperable throat cancer. I believe most of the people who correspond on this site are American - but we live in the north of Scotland in the UK. Treatments are bound to be different, but I guess symptoms, feelings, etc. will be the same worldwide. By the time my sister was referred to a hospital consultant, he said it was too late to operate - she would have a massive stroke if he tried because of the position of the tumour. Lesley underwent 20 days of intensive radiotherapy which ended about 7 weeks ago. The tumour shrunk a bit and made it easier for her to swallow. She was also able to reduce her painkillers and gabapentin (prescribed to help pressure on the facial nerves). But she is suffering quite badly from side effects now and I wonder if anyone can help. The head radiotherapy doctor quite bluntly said, "This thing is going to kill you" -but he couldn't put a timescale on it. He just said that they would keep a very close eye on things. Lesley is understandably very depressed and just living in limbo. She is hardly eating now as she has no sense of taste and an extremely dry mouth. Even the tiniest bit of food dries up and makes it impossible to swallow. She visits a palliative doctor every couple of weeks and he has prescribed a spray to use for this - but it doesn't seem to work. Even the slightest exertion causes her to sweat badly around the head and neck - but we're not sure if this is a side effect of the radiotherapy or a symptom of the tumour. Today, she told me that three of her teeth had fallen out - and I think she has hit rock bottom now.
On one of the hospital visits, I asked the doctor to write down what type of tumour was involved, and all he wrote was squamous cell carcinoma. I don't know why I am writing this - I guess I am hoping for someone to write back and make things better again - though we know this will never happen. I just want to try and improve the quality of her remaining time.

Welcome to the site Shelagh,
and I very sorry it has to be under such circumstances. She has a right to pain management and should not be suffering. I was on long term opioids for over 2 months post Tx. They probably took her off of them too soon. They gave me the spray too and it burned like hell. I used a concoction that the pharmacist compounded of mainly lidocaine and liquid morphine that was a "swish & spit". She should start getting her sense of taste back in the next few weeks. She would probably be better off on a liquid or blended diet, for now, and also needs to take in 2-3 liters of water a day. If she eating solids then try using a straw with the liquids to direct it and ease and lubricate swallowing. She may be able to survive longer but will have to force herself to eat or she should get a PEG tube. Radiation is pretty brutal and she should be able to gain some quality of life back, but it can take several monthes.

At this point home hospice care might give her more comfort and better pain management. Share your fond memories and past experiences together, stay in the "now" and take it one day at a time - consider each one a gift. Anti-depressants may help as well. Most of us know only too well about the feeling of living in Limbo. A few persons here with terminal cancer have had 2-3 years of a decent quality of life.

We have several members from the UK, we are a multinational forum. Cancer doesn't care what country you're from.

Thank you for your support, Gary. My sister has today asked for an appointment with the palliative doctor in order to try some different medication for the dry mouth etc. and also to talk about the other symptoms that are making her so down. Although not eating, she is taking in some milk & yoghurts - so at least that's a few calories she's getting. I was reassured to read that her sense of taste might return round about now - I'm sure that would make a big difference to her. She is very independent and refuses to go in to a hospice, even for a couple of days to get her diet & side effects sorted out. She is afraid that if she goes in, she won't come out again. So she's soldiering on at home - and I do try to be cheerful and positive when I see her. Hoping that the doc will be able to help a bit on Thursday. Thank you again for your words of wisdom!

Dear Shelagh, I am sending prayers for you and your sister. And wishing strength for both of you. Your being there is so important to her. Stay close. Amy

Shelagh,
Home hospice is available there. In the US they can come to you and you can stay at home. They send out visiting nurses, bathers, counselours, dieticians, etc. They will provide whatever equipment you need to be comfortable. They will insure adequate pain management. In some instances even provide on site respite care for the caregivers. It's actually less costly for the government to pay for this than hospice in a dedicated facility although those exist here also.

Does she live alone? She probably should have 24 hour care. She will need a live in caregiver. Very few of us were able to go it alone. Family and friends will have to "step up". This requires a network approach.

See this link for UK questions about hospice care: http://www.hospiceinformation.info/whatishospice/questions.asp

According to this site Hospice care in the UK is organized very much the same as the US. They probably just want to meet with her to put together the appropriate resources for home care. I have personally been through this twice with my stepmother and father and the hospice people were fabulous. The only reason why she would be kept in a hospice facility is if she required constant medical supervision (because her medical issues are beyond the knowledge or skills of a caregiver) or if she didn't have a caregiver at home who the hospice people can train.

If she could add some Carnation Instant Breakfast to the milk that would add quite a bit more calories. Surprisingly, I never lost my taste for coffee so I made a lot of Hagan Daz coffee flavored milkshakes and they have an espresso flavored Carnation instant breakfast. She needs to experiment with different tastes. The taste buds don't return all at once. It's a "phase in" process. Typically salt taste is the first to come back and sweets are last.

Yogurt with acidolpholis will help inhibit thrush as well.

I don't believe that there is much in the way of medication that will actually stimulate salivary function.

Drugs like Ethoyl will protect the salivary glands somewhat during actual radiation but it is a very daunting treatment and most can't tolerate it. It's not effective for post Tx.

Most of just carried a water bottle everywhere we go and consumed basically liquid diets or foods like soup, pasta and things with lots of sauce or gravy. Meats were one of the hardest to swallow. I still have problems with meats like overcooked chicken or steak. I basically order beef "still mooing".

Biotene has a variety of products that will help with dry mouth issues as well. Go to the hompage and do some digging around there is a ton of information there.

Gary,
Thanks for all the information and help. We had an appointment with the palliative doctor today and he has put my sister back on steroids which he thinks will help a lot of her 'minor' problems. He more or less said that the salivary gland had been permanently damaged - which didn't go down too well! So she just has to persist with the mouth gel and lots & lots of water.
She has found another lump in the throat area just this week so we are going back to the hospital consultant on Wed. It might just be a gland thing, but best to get it checked out. And we're hoping that he'll also be able to get Lesley an appointment with the hospital dentist. Apparently there is an extremely lengthy waiting list - but I would hope that due to her circumstances, she could get seen without too much delay.
Thanks for the advice about diet. I suggested lots of things to her today, but she really has given up on food. A few weeks ago she at least managed to eat potato & gravy - but she says that as she now has absolutely no appetite, as everything tastes like either cardboard or cotton wool, and as food just dries up in her mouth and can't be swallowed - well then, she just can't be bothered eating. The doc today didn't seem unduly concerned about this. I got her some dissolving vitamin/mineral tablets this afternoon - and it took a whole lot of persuasion to get her to sip it down. Unfortunately I live and work 30 miles away so can't care for her on a daily basis. She won't hear of any home hospice care - just says that she can manage on her own for the time being. So I guess I just have to go along with that - I can't force her to do things she doesn't want to, even though I think it would be better for her.
But it helps to talk about it with someone who has been through it and understands. Thank you for that.
Shelagh

Hello Shelagh
I am also from Scotland... Dunoon, on the west coast.
I am so sorry you are having to go through this, please dont hesitate to private message me if you feel like it.
I am sure your sister has access to nutritional suplements on the NHS.. but if she has lost heart you are right you cannot force her. Maybe she would like a milk shake with lots of ice cream and a carnation instant breakfast in it...
I would suggest that she ask her Doctor for an anti-depressant, it cannot hurt.
I wish I knew what to say to make you feel better , I know you are really scared for your sister. Don`t hesitate to ask if there is anything we can do to help.

Take Care
Marica

Just to say that we visited the consultant again today and he doesn't think that the lump on the other side of the neck is anything to worry about. He said that tumours can occasionally appear on the other side of the original site, but he doesn't think that's the case here. It's actually smaller than last week, so he is not unduly concerned about it.
My sister then asked about getting her remaining (very wobbly) teeth extracted. The doc explained that they are not very keen to do this due to the high likelihood of infection and slow rate of healing, but as hers are in such a bad state, they will extract the worst two or three next week and then, all going well, another couple in a fortnight's time. We know that there is a very long waiting list for a hospital dental appointment, so we're very grateful that the consultant is getting Lesley seen almost immediately.
Another piece of good news is that the steroids that Les started again last week are helping a lot and she feels she has more energy - and even a bit of an appetite again! So it's back to the potato and gravy - though she still can't manage to swallow chicken or meat. I suggested mashed- up carrots and turnip, just to get some vitamins etc. We did ask about anti-depressants, but the doc thought we should wait to see if the steroids improved matters before prescribing them. My sister was really good today after the hospital visit and more like her old self, so it was the right thing not to prescribe them for the time being. What a difference a week makes - and some magical steroids.......
So this thing is like a rollercoaster - down one minute, then up the next. You just have to hang on and go with it.
Thank you, Marica, for your note. It's nice to hear from a fellow Scot!
With best wishes,
Shelagh

Tell your sister to try this recipe, I eat it at least once a week.

Ham shoulder in a huge pot and boil it for about 45 minutes covered with water.

Add potatoes, turnips, cabbage and carrots (sliced of course) and boil until the veggies are done.

Serve it up and MASH the heck out of the veggies, even pour some of the broth from the pot on them..........delicious flavor. I add vinegar to my cabbage also. If I cut the ham up in tiny pieces and mash it a bit, I can also eat that.

Then the next day, I cut all of it up into diced pieces and fry it up in the skillet with lots of butter. Fry it up good, then mash it on the plate. I have no top teeth at the moment and had radiation also, and I can eat all of this great.

Hope it helps.

Shelagh,

What a battle. My heart goes out to you and your sister. One must give her credit for wanting to stay independent. We never want to give up. I am also glad to hear your sister is gaining some appetite back.

I read the recipe above, and have one suggestion to add. Have her put veggi's thru a blender. potatoes thru a blender..EVERYTHING thru a blender.

Set up your dish with a spoonful of each thing, and you would be amazed at the color on the dish... all mush. Green for asparagus, white for massed potatoes...yellow for eggs.. each one thru the blender separately.

Then when I ate, one mouthful at a time... softened with broth... I could swallow just enough..to enjoy it. So what you don't chew!!! Chewing isn't the best thing in the world.!!!!

My Dad has achalasia, a swallowing disease, for some 5 years now. Mother and I have become expert in the soft mushy diet..because there are times he can't even get a liquid down his esophagus.

I have now adopted many of the tricks we learned to my own situation... They work.

Dear Minniea and Nanci
Thank you for your recipies and advice. I've passed them on to my sister and hopefully she'll try them out when she's feeling up to it. She was about to try some cauliflower cheese when I spoke to her yesterday, but wasn't holding out too much hope of being able to taste it. I just can't imagine what it's like - being unable to taste anything - and this has certainly made me appreciate everything I eat. To be honest, I don't think she can be bothered preparing turnip, carrots, etc. when she's on her own - but even if she manages to open a tin of 'good' soup, at least she's getting some goodness from the stock and veg. She's been a bit tired and fed-up this week-end and is still waiting to hear from the hospital dentist about going in for the first couple of extractions. She never thought she'd be looking forward to a dental visit so much!
If she's having trouble eating now, I don't know how she's going to get on when she has no teeth. The doc said they would try to get some kind of plate made up, but her mouth is in such a mess that I doubt very much she could manage to wear one. Anyway, we'll cross that bridge when we come to it.
Thank you again for all your help and concern.
Shelagh

Just to let you know that my sister has had all her upper teeth removed - and so far so good, she's experienced no infection in the mouth area. She feels a lot happier now and is not afraid that one is going to become dislodged and she's going to swallow it. They are going to remove her lower teeth in four weeks' time, all being well.
She is eating a lot more now and a very slight sense of taste is returning, though the dry mouth persists. I had a visit with her today and she seemed very calm and content. She thinks she looks like an "old, toothless witch" and that she can't pronounce the letter 'F' properly, but says she doesn't care! She appreciates the most insignificant things now and takes nothing for granted. For the first time in ages, I didn't come away feeling sorry for her - just glad that she's found some sort of contentment.
Thank you again for caring.
Shelagh

Shelagh
Just found this site myself, been a great help. Have you got in touch with the MacMillan cancer support, there

Rolf and Shelagh
This may also help..
WWW.cancerbackup.org/uk
Free phone number for help desk
0808 800 1234
For free information booklets on various cancers, and treatments, etc. Also the desk is manned by specially trained nurses who are very easy to talk to and can help with many issues you may have.
Glad you found us here
Sunshine..love and hugs
Helen

Helen & Rolf,
I have been in touch with the cancerbackup.org site and they have sent me several very helpful booklets. Haven't tried MacMillan yet - I suggested to my sister that she might like to talk to someone who understood what she was going through - but she still insists she can manage on her own.
It's less than a week since I last wrote here and, in that time, she has gone quite a bit downhill. She fell (indoors) a couple of days ago and banged her head off the door - that has really shattered her confidence. Said she just got up too quickly from her chair. Her mouth is once again in a bad state and feels 'like mush' and swollen - so she's more or less stopped eating again. (Maybe the reason for her falling?) Think she has thrush in the mouth - so she's been prescribed loads of tablets again + extra steroids. Hopefully when she gets them tomorrow, she'll start to pick up a wee bit. She was very down on the phone tonight - so different from last week-end. She seems to be cutting herself off from everyone, saying she's nothing to say to people.
I am seeing her on Tuesday, so will try then to get her to speak to someone from MacMillan - though I know that she'll probably tell me where to put the phone number! I don't know if she sees it as a weakness to ask for help - but she seems determined to 'go it alone' for as long as possible.
I wish there was something concrete I could do to help her. All I can do is try to stay positive and upbeat - and be there when she needs me. We don't, however, pretend that everything's going to magically come alright.
Hope you are all as doing well.
Shelagh

Dear Shelagh, I suspect that you are now into the toughest phase of your supporting your sister. It's where I am also with my husband. I am sending you strength. John has fallen several times- it is usually the result of his standing up to quickly or bending down to quickly and his blood pressure drops ,altho is did happen a few times as a result of not enough hydration or nutrition. He now counts to 10 slowly before rising from a sitting position to standing and that has helped alot. I can understand your sister's reluctance to have to socialize or deal with other people. Her energies really must be self directed now. All you can do is be there with her when you can and try to get the best medical supervision for her. Is she on anything for depression? Amy

Amy,
My sister isn't on any anti-depressants at the moment. We did mention them to one of her doctors a few weeks ago, but he seemed a bit reluctant to prescribe them. I visited her again yesterday and we had a really good chat about the 'old days' when we were growing up. It really cheered her up - and we seem to be making up for lost time, when we weren't really that close. One of her cheeks looked really swollen yesterday - but she's developed thrush in her mouth and it may be the infection that's aggravating the internal tissue. I don't know. She was prescribed an anti-biotic last Thursday, but didn't get it from the chemist until Tuesday (her local chemist had 'run out'). So I don't think the delay in starting the medicine has done her any good. She's also on a high dose of steroids again, just for one week, together with loads of painkillers.
She wasn't 'down' yesterday - in fact we were able to discuss her not being here with a laugh. But, as I've said before, it's like a rollercoaster - one minute laughing, the next crying. Our other sister died 8 years ago, so we believe that she's watching over us.
I do hope you and your husband are managing to have some good times also - and share happy memories.
Best wishes,
Shelagh

Shelagh, I always hated rollercoasters as a child, and I agree with you that this ride is like being on one. Glad you got to spend some positive time with her. We are trying to carve out positive time here also. It's hard when they are hurting. Stay strong. Amy

An update on my sister. She eventually agreed to go into hospital for a few days last week to get her medication sorted out. She was in a great deal of pain and took some old anti-depressants that she had kept lying around from previous years - just to get some sleep. The result was that she was out cold for about 10 hours and, when I couldn't get in touch with her all day, I immediately thought the worse. So, she did have 2/3 days in the palliative care hospital and they re-prescribed all of her pills and potions. So her batteries are recharged for another wee while. She was due in today to have her lower teeth removed - but I'm not sure if they would have done this or not because I think she still has a thrush infection. Just waiting to hear. I thought she might just leave it, but she seemed determined to get rid of the lot as they were annoying her no end. It's just one more painful thing for her to go through - let alone the indignity of having no teeth - but she says that she doesn't care how she looks or sounds. Just as long as she gets some benefit.
Thank you to all concerned for such a caring and helpful site. I shall keep in touch, though think I should be moving to another 'Topic' area by now?

One month on, my sister is now in and out of the hospice and currently waiting to have a stomach peg fitted as she can no longer swallow any food. She has good days and bad days - but is quite happy to be in the hospice during the week and then get home for the week-end. We're all hoping that once she gets the peg, she'll be able to take in a bit more nourishment and gain some strength from that, as she's fairly weak at the moment. After this procedure, she wants to come home and stay home - so she's hoping to get a McMillan nurse to call in regularly and has also been promised some aids to help her get round the house more easily. She's started making a Christmas shopping list, so I think she's set herself another milestone. She's had a very poor last month, but seems to have got some of her old spirit back all of a sudden, and was even arguing with me today! Her voice is very husky of course, but she uses it wisely and doesn't talk unnecessarily. Her strength of character is quite amazing - and I hope it stays with her to the end.

Dear Shelagh, You sister is a very strong person- I wish that strength for you also during this very painful journey. I hope that the two of you will be able to spend meaningful time together over the next months. Amy.

It sounds like you're all doing as well as you can. I work in hospice in the United States and we often see patients get that burst of energy that your sister is having with the prospect of going home...even if it is for a weekend. There are differences in your health system but the concept of a visiting nurse is pretty universal and homes can be modified to promote optimal independence. Hope she gets to do her Christmas shopping. Regards JoAnne

I'm glad your sister is doing somewhat better. I recently joined this site myself and found it very helpful. I was diagnosed with squamous cell cancer in the mouth about a year or so ago and I didn't get treatment immediately. I started treatment this Sept or Oct and at first I could eat soft foods. Now I CAN'T eat at all. I, for the last two months, have drank all my foods. I don't even consider potatoes because they are the dryest and worse to swallow. I, like your sister, did not want a tube but was told if I didn't put on weight it would be most necessary.

Since October, I have blended 3 eggs (70 cal ea0 in olive oil (120 cal/teaspn), instant oatmeal (different flavors @ 130-150 cals), Nepro nutriental drink (475 cal), carnation instant brkfast (220 cal w/cup of milk). EVERYDAY. I dont taste much, but its easy to drink and has lots of calories. I'm waiting to eat solids again.

Snacks is four scoops of vanilla icecream (180 cal/2 scoops), two packs of instant breakfast (220 cal/pack w/milk) and Nepro nutriental drink (475 cals.

Lunch/Dinner is always large cans of Progressive Soup blended (300-350 cals)

I'm not tired of it yet because it adds up to lots of calories and I'm gaining weight and people are commenting on how good I look. It feels good and I didn't have to get a peg or tube in my belly.

I am and will continue to pray for your sister because it sounds like shes in a tough spot. I encourage you to stay on her though. Reminding her that this is a fight for her life and that you love her and want to spend lots of more years with her. My youngest brother has been a TREMENDOUS help to me. Words can't even explain, its as if the disease was his and it has help me so much.

My prayers are with and for you. I believe God is listening to not only me but He also sees your heart and care for your sister. He'll answer. So you be encourage as well.

Lesley eventually got home on Thursday last week. She now has a district nurse going in morning and evening to check that she is setting up the overnight feeding tube properly - and then dismantling it in the morning. She's getting quite confident using it now - but doesn't yet feel any benefit from having the "brown water" dripped into her stomach. She tires very easily now - but is just glad to be back in her own home.
Thank you 'Cooldown' for your kind thoughts. Your words of encouragement are greatly appreciated - especially as there are now days when I can't seem to say or do the right thing for her. I know it's not her fault when she gets snappy.
So we're looking forward to Christmas. Way back in March when she was diagnosed, we never thought she'd see the end of the summer, let alone the end of the year. So each day is a bonus.

Shelagh,
You know I am writing you this, first hoping that all is well, then secondly, I was reading over your original posting and noticed the doctors comments of " this thing is going to kill you". Over the weekend, I was speaking with my family and talking about my hospital stay. During my time at the hospital, my family was there 24 hours a day. I was asking them "why did someone stay with me everyday & night" and my brother told me the doctors said to them, blantantly " He'll probably "expire" before his teeth come out".

I had no idea that he had said that. I find it very offensive for a doctor or for any person to try and dictate to me my life span. They are not GOD. They can look at symptoms and make conclusions, but they certainly cannot say, who is going to live or die.

When I was looking at your post tonight, it just upset me that they say things that they really don't know for sure. They attempt to put fear in the hearts of our family members, who in turn transfers that fear into us, the patient. We don't need fear, we need hope. I encourage you to treat your sister with love and care, as you always have. But put no certaninty in the "man's" words of the lifespan of your sister. Again only God determines who lives or dies. And the doctors ought to be more humble and use a better choice of words. With Love & Compassion. Cooldown!!!!

Dear Shelagh, as hard as it may be, you can't take the "snappish or irritated" remarks personally. It just goes with the territory. Stay strong and hug her alot. Amy

Some of us prefer a straightforward assessment of our condition and propects from the medical professionals, whereas some of us want it to be more subtle or even non-existent -- What hurts is when MedPro is one kind and the afflicted is the other. The MedPros are often wrong because it's not an exact science, but I believe it's valuable to have at least an estimate of the expected severity of the situation.

Pete

Peter, Very well put----I could not agree more with you and perhaps JoAnne 1981 could address this issue. Some of us would love to know that we have 6 mos. left and others would stop living and fall into a depressed state or a combination of both. Dr.'s I believe don't try to play God it is just so difficult to predict and they base their prognosis on many similar cases. If we all adhered to stats most of us wouldn't be posting here. There are so many involved and so many lives affected other than the patient that I think I would appreciate an honest calculation from my drs. If I prove them wrong that's not so awful.

Back to the medical hospital today when the docs casually told us that there were now numerous tumours in my sister's neck. Apparently there is no point in operating to remove them as they would just re-appear. The doctor also thought that surgery would present a new set of problems for her, so it just isn't an option. Neither is a further dose of radiotherapy. He was also unable to tell us if the tumours were fast or slow growing - so all in all, it wasn't a very good appointment. Having to accept that nothing further can be done is very difficult. She still goes weekly to the hospice to see the palliative care staff and has an occasional visit at home from a nurse to check that all is well with the PEG tube. So she's still managing amazingly well on her own, all things considered, though I know today's news will have knocked her back a bit.
So we've decided to ignore what we learned today and just carry on as 'normally' as we can. What is the point of worrying when there's nothing that can be done to cure things. There is no alternative - other than to give up - and I know she's not going to do that in a hurry!
Thank you once again for all your kind thoughts.
With best wishes to all for the New Year.

Shelagh, I am so sorry that your sister is not improving, It must be so difficult for you. I will be praying for both of you.
Mark D.

Shelagh, I am so sorry that your sister is not improving, It must be so difficult for you. I will be praying for both of you.
Mark D.

Shelagh,

I agree don't ever give up. My thoughts and prayers are with you. Cherish everyday for what it is...another day together.

Tim

Dear Shelagh, The 2 things that come to my mind are #1. Make every day with your sister special and #2. Don't let her deal with pain she can't tolerate. I'm wishing much strength in getting through this. Amy

Having a bit of a problem with medication at the moment. My sister had to phone the emergency out-of-hours medical team the other week-end as she was in a lot of pain. Doctor came and told her she could crush up all her tablets and take them that way, as she was having difficulty swallowing them all - especially the slow-release, twice-a-day painkillers. She should not have been told this as, of course, she ended up taking a twelve-hour dose all in a oner. One ambulance ride to Accident & Emergency later ..... But fortunately she survived and is back home again. She's now been prescribed painkillers on a patch which she has to change every three days. She still had a lot of pain today, so they're obviously not working as well as they should. Back to the palliative care doc on Thursday, so hopefully he'll up the dosage or try something else. We are going to ask if it is possible to have the medicines in liquid form which can then be taken in via her peg. It would certainly make life a lot easier.
Les celebrated her 58th birthday on Sunday - yet another milestone she thought she would never reach. We take each day as it comes - some good, some bad.

I had the pain patch (fetynol) and I had liquid morphine sulfate for break through pain. I needed both. I als had liquid vicodin if I needed it. Good luck with the Dr and I hope for more good days than bad.

I had the pain patch (fetynol) and I had liquid morphine sulfate for break through pain. I needed both. I als had liquid vicodin if I needed it. Good luck with the Dr and I hope for more good days than bad.

Shelagh;
When my Oncologist suggested/prescribed the Fentanyl patch it was a night and day difference for me compared to anything else I had been prescribed except for morphine. As the pain increased they increased the dose, but it gave more consistent relief. Don't know when your sister started using the patch but I was told it would take a little time to deliver consistently. If it isn't working speak to them about raising the dosage.

Praying that the good days outweigh the bad.
Stay strong....

Steve

My heart goes out to you all who need pain medication and can't swallow it. I had difficulty swallowing anything after my surgery, and we crushed all of my meds. I finally figured out that some of them were irritating my mouth, since they are not intended to be dissolved in the mouth. If you are extra irritated, consider that this might be a contributing cause. The fentanyl patch might be just the ticket for this problem. It is expensive (!!) and it does come in a generic form, which is just as effective as the brand-named one ("Duragesic.")

Dear Shelagh, there is nothing worse than watching someone you love suffer with unmanaged pain. As a caregiver, I take a different approach from the posts above.#1. It sounds like Les's pain management[ at home] has not been good so far.
#2. It sounds like she either got some bad advice about crushing those pills or she did not understand the instructions.
In either event, it sounds to me like she should be admitted to a hospital for a few days to get the pain under control and then get to go home with the medications that work and a clear understanding about how and when to administer them. Does she have someone to help? Once you are on strong drugs, you need help in keeping up with your doses.
I am not an advocate of the Fentanyl patch because my husband had a horrible reaction to it and scared us all.[ But he does not do well with drugs]. At any rate, I think Les needs to be under serious medical supervision while someone finds the relief that will work for her. You may have to fight for this, but she should get pain relief that does not further jeprodize her at this point. Amy

Dear Amy and all,
I saw Lesley again today and she is in a lot of pain. The Fentanyl patch is obviously not working and on Thursday, her hospice doc (out-patients) prescribed a higher-dose patch - 75 instead of 50. For some reason or another, the prescription wasn't available to be picked up from the local chemist today (Saturday)- so we are hoping that it will be available on Monday. There seems to be an intolerable delay in the doctor prescribing a new/stronger drug and the moment she can actually start taking it. I am going to look into it next week and try to find out where the hold-up is. So Les is popping Oxynorm like sweeties but they don't seem to be doing much good. I, too, think she should go into the hospice for a few days to get her medication sorted out, but she doesn't want to do this - despite the fact that she's been in for a few short-term stays already and knows what it's like. I don't have the right to make her do anything that she doesn't want to do - but I so hate watching her in such pain. Wish she wasn't so stubborn - but that's probably a good thing when you're up against cancer. She still feels she's in charge and capable of making her own decisions - so until such time that she isn't, I have to respect her decisions. I just wish she could have the odd 'good' day - it would make such a difference to her spirit. Hopefully though, the stronger patch will help, once she eventually gets it.
Shelagh

Lesley doing well at the moment. She caught an infection a couple of weeks ago which turned out to be a blessing in disguise. The emergency doctor who visited, prescribed an antibiotic - but also arranged for district nurses to come in three times a day to administer all the drugs in liquid form via the peg. What a difference this has made! I know Les was having trouble swallowing all the medication before this and she was missing out on quite a lot of doses. She was getting very confused and forgetting what she had and hadn't taken. So at least we now know that she is taking in all that she should be.
Another miletone last Sunday - her daughter's 18th birthday. This was something that she never thought she'd live to see. It was March last year when she was diagnosed and told that she only had 'months' left - or weeks if she didn't have the radiotherapy.
She still has bad days when her tongue & mouth hurt like anything - and her speech is getting a bit difficult to understand now - but she's not lost any more weight since getting the peg fitted & getting her overnight 'feeds'. So she's encouraged by this, as she was worried that she was just going to fade away to nothing.
We don't know what is going to happen next - and have decided not to ask. Prefer just to take each day as it comes.
Thinking of you all.