"loco-regional disease is so hard to manage"

Thus spoke my palliative care consultant last week.

I’ve not posted for a while because I’ve been holed up for 2 weeks in my local hospice for pain management to bring the awful pain in my arm and shoulder under control. I’m now on a cocktail of drugs: pregabylin, methodone, effintora. I have tried all the morphines and gaberpentin. Pain still not greatly improved but I decided I wanted time at home more than time in hospice. Meanwhile I have turned into a disabled woman My arm is swollen to about twice its usual size and my arm is pretty well useless…

My skin mets are growing steadily and I have several unpleasant ‘wounds’…with patches of sloughy (pronunced sluffi…dead skin), which have to be dressed daily.

Because of the loss of my arm I can no longer dress or wash alone (well not easily), eating is difficult because I can’t cut food, I can’t walk far.

Read the literature on loco regional disease and you might find a sentence or two about how it can be treated, but nothing, nothing to suggest the awful problems I now have.

I’m having to find a new way of living…and it aint’ smiling into the camera of an October fashion show. But I hope it might be a way of living which embraces humour, dismisses sentimentality and tells the truth about what living with advanced cancer can be like.

And treatment? There isn’t any really as I’ve used them up. Still may have a couple more cycles of caelyx.


Sentimental or not, still good to hear from you jane !!!

Jane…I’ve been looking out for you…I’ve missed your posts especially now in the middle of all the pink froth.
Truthful…yes…always…I hope you are able to find that new way of living…Belinda…x

Hi Jane

Good to hear from you again, but dismayed that you still have a lot of pain. I find it incredible to believe that in this day and age there are no painkillers that will work for you, I wonder if this is because the UK is way behind other countries in its cancer care or that there simply is nothing yet available anywhere in the world to deal with this problem? I can’t imagine how difficult this must make your life, how do you sleep etc. I really hope that somehow, someone comes up with a new idea on tackling this awful problem.

Best wishes


Good to hear from you Jane, though sorry to hear of your condition - I suspected as much. I hope some of the pink money may go toward research into managing and treating loco-regional disease.


Hi Jane - very pleased to hear from you - have missed your posts - and just so sorry to hear about all the cr*p you are dealing with - sounds abysmal and cant believe that we live in a world where pain relief cant be managed better …just really hope the last two cycles make a difference and things turn around for you … thinking of you jaynex

Been missing your posts Jane and thinking about you. So sorry to hear that you’re in such pain and such difficult day to day living. I really hope this latest cocktail of drugs will give you some respite from the pain.
It’s awful that your quality of life is now so difficult and I really hope this changes for the better for you.

Take care Jane and keep telling it how it is. I feel very “lucky” to feel so relatively well at the moment but it is all relative and as I glimpsed my reflection in the mirror as I did my usual bent over double shuffling to get out of bed it was like looking at the old lady I will never become!
Good to hear from you on here again though.

Hi Jane
I have been looking out for your posts and reading your blog. Assumed you hadn’t been up to doin posts on here.

I am another one who is disappointed in the poor pain relief available to terminally ill people. Maybe like someone said the ‘pink fluffy’ money can be spent on some drugs which will work.

Its always with great sadness I read of you being unable to use your arm and the neck sores weeping. My mum was exactely the same so horrid, people have no idea unless they are going through the same thing.

Do post again Jane when you feel able.


Hi there Jane, I am so sorry that you have been suffering so much pain without having any relief even after your spell in the hospice. Pain like this makes everyday life a misery. I have had pain in the past in my back, base of spine, ribs and spreading down my arms and legs. I didn’t know what to do with myself. Nothing at all helped. I would pace the floor, try to lie down, got up, walked about the room and all with tears streaming down my face. Not even 4 top-ups of Oramorph even touched the pain. Do they have a pain specialist at the Hospitalyou attend?. I was referred to one a few months ago and she came up with new ideas to help and I am not in pain now. I know your pain is totally different but surely someone can come up with something to ease yours. My current chemo also helped with the pain. I wish I could be of help.But I cannot really. I hope things get better soon. LOve Val XX

Hi Jane,

THought I hadn’t seen you posting your wisdom recently!

So sorry to hear you’re in constant pain - another myth blown out of the water - that even if there’s nothing more they can do to fight this dreadful disease, at least you dont have to suffer!!!

As a fellow sufferer of extensive skin mets, I understand your frustration at the lack of information about what to expect. I never expected to actually be able to SEE my cancer, or that it would weep, bleed and scab.

And as for living with a disability that you know will only get worse, I can only imagine how awful that is. I had a brief spell in a wheelchair when I had undiagnosed lung pt’s and the dramatic way in which my life changed just for that brief period was shocking and very upsetting.

I hope the new drug combination brings you some relief and that they continue to see your pain as unnacceptable and strive to find something that works.

All the best Jane, and keep posting.

Love Bex xx

Yes I have seen more pain specialists than I can count. I think there is a myth about hospices always managing pain…they dont-not in the UK, not anywhere in the world, Nerve pain is particularly hard to manage without knocking you out completely. Myths about pain relief are just one more cancer myth.

I can often control my pain…but at other costs. My arm is horribly swollen…2 or 3 times its size, and is impossible to lift…hence my present predicament is as much about my disability as the pain. I can’t shower, dress or eat unaided…these are addional dis-abling problems.

Caelyx may have slowed things down but not greatly. I don’t know whether I will have more or not.

Thanks for all your messages of support. It helps so much.


I am so sorry to read about your current situation. You always provide such good advice to the rest of us - i wish I could return the favour. I don’t have anything very useful to add but having watched someone very dear to me die recently of MND my experience is that careing for someone at home enables one to have more flexibility with the pain meds (within certain paramaters) but sadly in the end there seems little choice between being ‘comfortable’ but spaced out on opiates or being a bit more ‘with it’ but in considerable pain.
the whole cancer thing sucks

So glad to see you posting again Jane. And so sorry to hear things haven’t improved.

As others have said I have missed you posts and had assumed that the pain was not under control. How awful that must be plus the dis-abling effect of your swollen arm. I truly hope that things - pain, swelling, spread, can be helped with your next chemos, if you have them. Unfortunately, as anyone with mets, regional spread etc know things can change dramatically from Ok to bad. Maybe the fluffy pink money will get directed towards us?
Nicky x

Hi Jane – good to hear from you, but so sorry to hear that the myth of cancer pain relief isn’t a reality for you – hope there might be more alternatives for you to try out. And yes, let’s get some pink money directed at all of this!
Marilyn x

Hi Jane,
I have missed you welcome back. Sorry you are having to suffer with the effects of this disease. I know from my own condition how each day is getting more difficult to cope. No, I am afraid you and I are not the pretty pink picture of ‘Brand Breast Cancer’ we are the true face and we must keep telling it as it is.
Hope the new pain relief does in fact give you relief.
Love Debsxxx

dear Jane
Thank you so much for continuing to post, and for giving us the straight facts on what you are going through, without glossing over things, nor moaning (though you have every right to!). I can’t say how much I appreciate and have always relied on your posts for sound information and a realistic approach,. I can only echo the others in how appallingly unfair it seems that you are now in such discomfort and pain.
Like the others I think of you and wish for some respite and improved well-being.

Hi Jane,

The trouble is with this kind of pain, that is unremitting, and it also does your head in! You would think, as many have said, if we can put man on moon, invent self parking cars, and weapons that can wipe us all out in a trice, then surely we could manage pain. But pain is so complex and it is so individual.

Disability changes ones identity, and I don’t blame you for feeling bloody angry about that - I did too. I hope this passes somehow, i really do.

I feel angry that hospices and such like lead us to believe that pain can be managed - sometimes i’m sure that is the case, but sometimes it isn’t - I wish the message was a bit more honest that’s all.

Take care Jane

Right now, it is the almost complete numbness of my let arm which is worse than the pain. I cannot move my left hand or arm at all so dressing, washing, eating are all problematic. (and typing one handed) Anyone with good practical suggestions for managing life with one arm please let me have them.

I have decided not to have further caelyx as there was no evidence of it working. I have already decided not to pursue trials…so its me and my cancer left to live and die best I can…and my cancer does do its damage slowly.


Hi Jane,
Lovely to see you back on the site, but what cr@p you are putting up with… Has anyone suggested you see an Occupational therapist (OT)? You could get access to one through your hospice, or phone the local social services dept and request one yourself. Thay can advise you on methods for ‘activities of daily living’ and have lots of handy gadgets to help e.g. to spread butter on bread one-handed.
I think you should keep haranguing those in charge about the pain, and see if there’s a more specialist pain service you can attend. It really isn’t acceptable for you to have to suffer like this. There MUST be something out there that can help you feel more comfortable. Pain just colours everything else, and ‘everything else’ is just too precious to miss!
Sending you big gentle hug
with love
Jacquie xx