"loco-regional disease is so hard to manage"

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

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.

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 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.

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

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