Feeling Completely Helpless

Hi Billythedog, so sorry to read this and the effect this is having on both of you, though in a kind of weird way glad you have managed to cry together - it hurts because we love and all to often we hear people saying "I have to be strong" and bottling up the emotions.

A patients decision on pain killers can be very personal, every time they give my wife Oramorph she is sick but trying to tell the doctors it is a problem they say lets just give it a try. Of course the effects of the pain killers can affect people all day and sometimes it can seem easier to live with the pain. Many patients are wary of doctors because they worry they will just end up in hospital, always know when Janice is really ill when she actually wants to go to hospital.

Would it help I wonder to talk to a dietitian to come up with suggestions about how to get the best nutrition in the last painful way?

<<hugs>>

Steve

Thanks for those words of advice Steve. Most of what you say are right. The Oncologist we are under is a PR*CK! Excuse the bad word. We clashed from day one. He has put the swallowing down to Thrush, which a 2week course of tablets was taken, the nutrition part is see your GP, the GP says Fortisip is too expensive to prescribe. The Oramorph situation is no go. She hid it before she was serious and just refuses it. She seems to think it will kill her! Thanks again

John

This is terrible can't believe your go would not give Fortisip my husband gets it all the time ..it's really is like a post code lottery ..he could not swallow but enjoyed tuned custard pours over a micro sponge as was so easy to go down ..lived on that for a long time with the drinks ..but sadly he is now got a peg fitted ...I would really demand the drinks as they as so help full..thinking of you both

Billy the dog, so sorry for the situation you and your wife are in. My husband had a time between treatments last year when he was extremely ill, given approx 3 months but the treatment thankfully worked and has given us a period of stability as he is incurable stated at diagnosis. During this time our Macmillan nurse took a very active role and to be honest was a god send. He liased with the gp surgery for us, and what ever he suggested the gp granted. The Macmillan nurse is so experienced in helping with the symptoms of cancer and trying to make the quality of life for the patient as good as it can be and seem to be in my experience very respected among the gp and district nurses. They are also a good support for the whole family. If you haven't already got a Macmillan nurse try and get one we got ours via a referral from my husbands specialist nurse, they can come out and see your husband and in our case liaise with the gp for you in regards to appropriate prescriptions of medications etc. Whenever the nurse came out to us if he felt any changes were needed in regards to pain relief meds etc. They were done the same day, All I had to do was pick the prescriptions up from the chemist. The help we had at that time was invaluable from the Macmillan nurse and will never be forgotten. At the moment things are not too bad for us but when needed in the future we know who to call. Also I would consider putting in a complaint to the gp surgery who made the comment about fortisip been too expensive to prescribe - that's disgusting and should in my view and I 've no doubt many other peoples never been said to you and simply just prescribed.  I hope things improve for you and your wife soon.

Sunflowers15 thanks for the advice. We have a Hospice Nurse and my wife is undergoing Palliative Chemo. The diagnosis was life changing and life limiting. She has lasted longer than they expected. Its just a brick wall when it comes trying to get her to take the Oramorph. I then have to watch her writhe about in agony. She cant swallow solids and liquid now makes her choke. I'm just at my wits end as its Breaking my heart watching so helplessly. 

Thanks again

J 

Hello Billy the dog. My OH, has pancreatic cancer and melanoma. He has lost huge amounts of weight and is more or less existing on procal drinks andaymes shakes. He saw the dietician yesterday and they just advised him to eat high fat and high calorie foods. He can't, but regardless, I still loaded the trolley with such items, changing brands  as nothing tastes right, and making sure things weren't too dry, another reason for not eating. I know none of it will be any good and will be lucky if he eats more than a mouthful. They alsu said they were going to write to the GP regarding his mouth. His tongue is coated at the moment so it might help but this has only recently happened. Have also ordered a tongue scraper, we have never used one before but he may try it.

As for the pain meds, he hates taking anything. Doctors have prescribed antidepressants which he has refused. He will take the solpadeine max I buy, but they are not helping as much now. Have just picked up ammitryptaline which I will tell him are for nerve pain, which they are but are also an antidepressant. The may help him sleep, maybe improve appitite, but that's if he gives them a go. As I write this I can hear him groaning upstairs. Another problem we have is that his last scan appears clear even though his bloods caused concern. On his melanoma appointment they found a lump in his armpit, last Wednesday. All of this is so difficult isn't it. Sorry, I am not helping but I can understand exactly where you are coming from 

Hello Billy the dog. My OH, has pancreatic cancer and melanoma. He has lost huge amounts of weight and is more or less existing on procal drinks andaymes shakes. He saw the dietician yesterday and they just advised him to eat high fat and high calorie foods. He can't, but regardless, I still loaded the trolley with such items, changing brands  as nothing tastes right, and making sure things weren't too dry, another reason for not eating. I know none of it will be any good and will be lucky if he eats more than a mouthful. They alsu said they were going to write to the GP regarding his mouth. His tongue is coated at the moment so it might help but this has only recently happened. Have also ordered a tongue scraper, we have never used one before but he may try it.

As for the pain meds, he hates taking anything. Doctors have prescribed antidepressants which he has refused. He will take the solpadeine max I buy, but they are not helping as much now. Have just picked up ammitryptaline which I will tell him are for nerve pain, which they are but are also an antidepressant. The may help him sleep, maybe improve appitite, but that's if he gives them a go. As I write this I can hear him groaning upstairs. Another problem we have is that his last scan appears clear even though his bloods caused concern. On his melanoma appointment they found a lump in his armpit, last Wednesday. All of this is so difficult isn't it. Sorry, I am not helping but I can understand exactly where you are coming from 

Blimey. I know what you are facing. Its horrendous for us the carers.

Billy the dog, I so recognise the feeling of your statement at been at your wits end and that its breaking your heart helplessly watching your loved one writhing in agony. I recall many times last year cradling, rocking and stroking my crying writhing in pain, dosed up with meds, over 6ft tall husband, I recollect the pain and heartbreak of this and feel your pain and heartbreak from what you have written. God bless you and your wife, I hope your hospice nurse listens to how you are both feeling, maybe your wife needs a change in anti sickness medication, pain relief, a thickener to help with swallowing liquids etc. A complete overview of her medications to see if there is anything they can do to make her feel more comfortable. My heart goes out to you both, take care.

Hi Billythedog

Just having a quick look and came across your post. Do you have a macmillan nurse who could maybe help re getting the drinks prescribed. If I have a problem with anything for my mum I phone them and they can usually point me in the right direction or sort things out for us. 

The issue with the fortisips is a joke but aint funny eh. My mum struggles to eat as well and after being on the ensures for probably almost two years she was taken off them.....we had to get the dietician back out and my mum was put back on them so maybe speak to macmillan or find out how to refer for the dietician yourself and explain the situation to them.

They will give you ideas as well for extra calories and my mum would smile and nod and tell them yes ill do this and try that but she didnt.........….she doesnt have the energy any more so last time dietician came out i told her straight, she will tell you what you want to hear but she wont manage what your asking.

After radiotherapy and having her voice box taken out and being attached to oxygen 24 hours a day she really struggles to eat so , its ensure drinks, full fat yoghurts, full fat milk, custard and one micromeal a day that she gets by on but its something. I know the micromeals aint ideal but its just a thought for your wife.........mince n totties, hotpots, spaghetti bolognese, these are all on my weekly shopping list.

Regards the oramorph, we are kind of in the same position although my mum does take it i think she could do with a wee review but every time i suggest it its a straight NO..

I do hope you manage to get something sorted....I know how you feel.

Jjacc