In yesterday’s press a ten year old girl was reported as having breast cancer and today a girl aged eight has ovarian cancer. That is just so sad and frustrating.
Love Debsxxx
Just in case anyone is interested - I have had another reply from Breakthrough regarding the Prima competition. They have scheduled a meeting to discuss the issues I have raised and all emails of complaint have been forwarded to Prima.
Hi - have scheduled a chat at 8pm on the other site if anyone can join us you’d be most welcome. If you need the web address it is on my profile.
Hope everyone is enjoying the sunshine
Fiona
Re: Sad & Frustrated at this disease
I’d like this made an active thread again, so those more recently diagnosed as Stage 4 can see how far adrift the Secondary Taskforce was, in relation to meeting our needs.
Don’t keeping telling those with Secondaries what is good for us. Let us tell you what we believe to be the priorities.
So, we want among other things:
(1)Proper recognition that we exist and statistics to back it up
(2)More support against delays / bans created by NICE
(3)Events planned specifically for those with secondaries so we can meet those with similar problems and continue to give mutual help and support for free
What we don’t want is:
(1) Money squandered on unwanted emotional support from professionals
(2) Automatically being given Keyworkers to help us (because some of us are more than capable of looking after ourselves).
From someone who always felt she was on the “naughty table”!
Holeybones.
Hi Holeybones, Thanks for bumping up this thread coz I had missed it completely and have found it very helpful. I have read many of the posts from the beginning of this thread coz I didn’t know about this site when you were all writing to each other about coping with secondaries etc. I wish I had known of such a site when I was diagnosed with secondaries 10 years ago ( but I didn’t even have a computer then so it wasn’t likely I would). But at the beginning I found it a very lonely and secluded place and I did not know even one person who had bones mets…infact thought my days were numbered. I think I have got my head round it now…had plenty of time to…it has been really difficult at times… but I do feel differently about the diagnosis now,and am pleased to still be around. When I was diagnosed aged 39, over 20 years ago it was very rare to see any younger women with the disease The time that nurses had to support you was better in those days. Now when I go to the wards they are so full of people, so many of them young, and the care they are receiving is lacking somewhat because there are not enough nurses to care properly for the number of patients now. (This is merely how I see it). But the fact that we can come on to a thread like this and talk about secondaries and support each other is one of the best things that has happened to me this year and I only did because I was looking up the web for information about the difficulties of tooth extraction when you have been on Biphosphonates. I did have a " wobbily" a few months ago and was at a really low ebb. Couldn’t pull myself out of the hole…but the support and love I have found on here has been so amazing. So thank you all for opening your hearts and putting down in words your fears and thoughts. It is good to know there are others out there who know exactly how I feel. Love to you all, from Val ( Scottishlass)
It felt very strange, to me, re-reading this thread, it was only started in April this year but just a few months later I am re-reading posts left by those who have since died. All very sad.
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Started rereading this thread, but the tears welled up.
I have questions, is the facebook group that was going to be started, actually started and if so is it still going? I wasn’t on facebook then, but am now.
Snoogle
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Hi Snoogle
We set up a site which you can find by going to my profile, I am not allowed to post the link here.
It is no active at the moment as only a small handful of people were able to commit any time for various reasons.
I am more than happy to try again - I went through a bit of a low when AnneTh passed away as she was one of the forces behind setting the site up. There is lots we could do!
all the best
Fiona
Was interested in this thread, but haven’t really gone back on it.
I have been using the Forum for about 6 months now and often find it hard to get into a thread. Most people seem to have known each other for ages and I feel a bit of an outsider. I come from East Kilbride near Glasgow and there is a thread of about 12 girls who all live in Glasgow and area. They are mostly young women and are so lovely. I don’t know how they manage with chemo SE’s and young families. I am older ( 60 ) and have had secondaries for 5 years. I was first DX in 1997had mastectomy, chemo, tamoxifen and everything seemed OK. Totally devastated when secondaries diagnosed. It is on my ovary and pelvic area. They can’t operate. Been on Taxotere and Xeloda on and off since then. Just started 4th course and don’t know how many. It is successful, but tumour grows when chemo stops. Last time I just had a break of 4 months. Every time seems to be a bit more difficult to cope with. The usual SE’s - tired, nausea, sore joints, etc etc Reading this back sound a bit miserable - I’m not. I have so much to be thankful for and appreciate life. I even got my free bus pass last month !!.
Like Val, wish I know about the support of BCC and the forums.
Just recently heard one of the younger girls on my thread just finished all her treatment when it was discovered it had spread to her other breast. As you can imagine she is devasted. There is a drug that could help her, but not available because it’s too expensive. This just gets me so angry. How can the NHS do this to a young women. We should all be fighting government depts who make these decisions. Maybe they should be made to visit Oncology Depts and see the bravery of so many women facing treatment and an uncertain future.
Take care everyone
Sheila
Hi there, Those people at nice have just turned down a drug for liver cancer patients because at £3K a month it is too expensive. I get so angry when hideous amounts of money are spent on protecting the identity of child murderers. How many cancer patients could be treated with the money? Who do we value most in society? Begs the question doesn’t it. The human rights of convicted criminals put above the medical treatment of the law abiding and ill.
I so agree, Snoogle, it makes me so angry too when the government makes out that funding this costly cancer drug will deny other equally worthy causes. A reporter (Lawrence McGinty on BBC1 i think) said that funding this liver cancer drug would be equal to buying 16 of the new, improved CT scanners that they featured on the programme about a week ago - it ISN’T a straight either or situation. How about we stop funding all the immigrants that arrive in this country expecting us to feed, cloth and house them for the rest of their lives or denying criminals in prison all the luxurys that they have in order to fund cancer drugs, (some of which, like Lapatinib, are readly available throughout the rest of Europe). Gordon Brown was on the This Morning programme yesterday congratulating himself on bringing the survival rate for breast cancer to 90%. Does he mean the 5 yr survival rate? I think he must do, which as we know is not the same as there are many of us, myself included, which come into that category but are still dying of this awful disease.
Linda
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