"loco-regional disease is so hard to manage"

[Guest user]

Hi Jane,

Just catching up on the forums.....
I do tend to be all or nothing!!!!

I am really sorry to read you are in so much pain.
As you know I have had similar problems to yourself with secondaries in the regional area and mad pain.
Without sounding like a 'do gooder' was steriods ever tried or mentioned.... the reason why I was that that they were the only thing that knocked my pain into touch but it did take a few days.

Thinking of you
Tess.xx

[Guest user]

Glad to hear you post again, but sorry you are in so much pain. I have always followed your posts with great interest, as your case seemed similar to mine until last year. But mow you are in a lot of pain and I am in hardly any and relatively well, even though I have secondaries in lining of heart, lungs and what my consultant calls extensive lymph involvement. Also like you I have virtually come to the end of chemos.
Begining to suffer bone marrow toxity from all the chemos, so even though they have reduced the dose, imagine I only have few weeks of chemos left. My problem is that when I have no options left, I will find it very hard mentally, because while I am filling my body with all the toxic chemos, I feel I am doing something to fight the disease.
I is almost exactly a year since I was given the prognosis of 6 months to a year, and I am still able to live a virtually normal life, apart from the blood transfusions and virtually non existant neutraphil count.
I am thinking of you, and hope they can find something to ease your pain.

Marmite xx

[Guest user]

Jane you just asked for practical suggestions!

I know only too well - what the bloody hell it's like never being the 'same again' - it's dreadful, and further more it's not me, in the same way as this doesn't feel you. In fact the one thing i have reminded my kids of is that i didn't used to be like this. I got up earlyish and played badminton at least twice a week, and used to half run everywhere. Now I'm overweight with a limp and sometimes stay in bed half the day because I tire easily.

We both know where this is going - the question is how to make the best of what we have? Of course there is and will be a grieving process for what we've already lost and what we still have yet to lose. But if there is to be no quality in what we have left - what point is there? That quality is largely perceptual. I'm bloody angry too, and very sad, but I have to do some headwork as we all must do, if we are to value the time we have left.

I believe in some ways this the hardest part Jane, you can do this or every day you will be drenched in sorrow for what is lost.

[Guest user]

yes I have contact with ots who proudly show me their butter spreading gadgets and ots who have sock putting on gadgets (except they bring tights putting on gadgets...whoops)and social services who measure up for a stair lift just in case. yes there are a load of wonderful gadgets, but thet don't take away my pain...physical, social or psychological. If only the butter spreading lady would admit its all a lump of shit and she wouldn't like it if she had to use one.

celeste- I have taken my decision about treatement after long and anguished talking, thinking, mulling alone and with those I love and a few I don't. It's a decisions my oncologist respects as a very 'wise' one and its one I am proud of and feel in control of. The treatments left to me will make only a very small incremental diffference to my life expectancy (a few weeks probably, perhaps a few months but hard to be sure), and that difference doesn't mean much to me. If I thought chemo could ease my pain I might consider it but it won't...tradtional and experimental painkillers are more likely to do that.

Other women with different cancers will of course make different decisions as I would. Basically I am turning down nothing because there is nothing!

Jane

[Guest user]

Jacqui's right Jane there aqre mobility centres that have all sorts of gadgets in them that are really helpful. I visited one when my mobility was really poor, and was very impressed. They should be under disability aids in your yellow pages i would think. For changes you need to make to the home then the Occupational Therapist would best advise on that. Someone should be able to refer you GP or whatever.

It is probable that you have made your decision to accept no further treatment for sound and logical reasons, the only thing i would say to you Jane, is that sound and logical reasoning is sometimes very difficult to access if you are in constant pain. Is there someone who you can talk this through with - or have you already done that.

[Guest user]

Jane - sounds really difficult right now with what you have to put up with and decisions you have to make about traetment - i think jacquie has a point - there must be things / aids that enhance mobility and dexterity with one functional arm which might help pracically - all that being said - does not help the emotional stuff that goes with it .. thinking of yo and sending love , jayne x

[Jacksy]

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

[Guest user]

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.

Jane

[Guest user]

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

[Guest user]

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.
Sarah

[Guest user]

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

[Guest user]

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

[nicky08]

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

[Guest user]

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

[carolihne]

Jane,
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
cheers
Caroline

[Guest user]

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.

Jane

[Guest user]

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

[scottishlass]

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

[Guest user]

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.

Rxx

[AnneS]

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.

[Guest user]

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

[Guest user]

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.

Jennyx

[Guest user]

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

Linda

[belinda]

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

[juliet66]

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

[Guest user]

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.

Jane