I've just returned home from a 2-day residential course for women with ovarian cancer at Penny Brohn Cancer Centre in Bristol. One of the highlights of the course was meeting other women with ovarian cancer and having an opportunity to chat and share stores. There are 3 events I'm aware of that offer opportunities to meet others affected by ovarian cancer. I've added the URL for more details and booking instructions:
Ovacome Members' Day - Saturday 16 May, near Liverpool St, LONDON
I'm sure Target Ovarian Cancer will organise other events for us at Penny Brohn and other regional supportive events. Karin Podschun, who's been organising all the events across the UK, is leaving next month and will be replaced by two members of staff so hopefully there will be more regional events for us all to meet up.
Hi I hope it was informative and relaxing. There never seems to be anything like this in Scotland. Do you by chance have any knowledge of a web site or forum I could access in Scotland. I would certainly appreciate any info. Many thanks
It might also be there are NHS Cancer Patients Days? I have been two a few events in England. There's nothing like that for us in Wales.
Karin Podschun organises these days. It might be worth emailing her to suggest another event in Scotland. She leaves TOC on 14 May and is being replaced by 2 members of staff so they expect to increase the numbers of supportive events across the UK. I've just remembered that TOC are talking about a funded post in Scotland. It is worth emailing Karin to ask about all the developments.
It most certainly is. Many thanks. Will look I to it. Just wanted to compare treatments and what's on offer in various parts of Scotlans. Hope you are well. Jacqui
Wow, that's so close to my heart Jacqui - to compare what's on offer in our own NHS. My findings over the last 2 and a half years is there's a lot of variation within England, but generally Wales has less access to the latest diagnostic equipment, no cancer drugs fund, and less access to super-radical surgery. 16% of our cancer patients are referred to England as we don't have resources that are accessible in Wales for them.
I would imagine a good way to start a discussion is to post a blog to ask who is based in Scotland and explain it would be good to keep in touch with one another for support, sharing information and experiences, and so on. I guess once you have some names you can either have a discussion here on the public forum, start a Private Message conversation, or even a Facebook Group if there's sufficient interest.
I've certainly learned a lot from comparing notes within Wales, and with members across the UK via this forum.
It would be good to keep in touch. There are historic links within the Celtic nations. I hope you have success with this new idea.
Morning. That's shocking that Wales is so limited in resources etc etc. I think , certainly in Aberdeen we are not quite so limited but again I am really unsure what exactly is on offer in say Glasgow or Edinburgh. I have e.mailed Karin so will await a reply and yes will post a blog .
I know for example that Avastin is not on offer here unless a specific case is made for it.
Let's keep in touch. It's useful to have contacts in the Celtic Nations. There's certainly very uneven access to treatments and Target Ovarian Cancer lobby actively about this.
I'm lucky living just 2 hours from Westminster so I can straddle the two political areas and make comparisons though that is an exhausting route to take. Not so easy from Scotland and Northern Ireland. I always say the devolved administration in Wales has created a situation where we're swimming round in a fish tank. You can't see the other side of the glass. No wonder regional politics are far from balanced.
I've heard access to drugs is far from ideal in Scotland even though your government has set up a new drugs fund which is at least a step in the right direction.
Target Ovarian Cancer are secretariat to the All Party Political Group on Ovarian Cancer which meets 3 times a year in Westminster. Another member of this forum from Fife, who has become a dear friend, has attended recent meetings. Target will help with travel and overnight costs should you be interested in going along and a group of us meet in London and arrange dinner out and a cheap hotel. I can give you the contact at TOC. The next meeting is by invitation and is about uneven access to treatments across the UK. It's on 13 June. Are you interested in going along? It would be so amazing to meet more women from Wales, Scotland and Northern Ireland to ensure these countries are better represented. No offence to England. I am English - I just live in Wales.
Hi. Due to a bit of neuropathy in my fingers unsure if my reply has gone out to you but was just saying it would be lovely to keep in touch and though I would love to attend the meeting in London I may well be starting the Rotterdam regime within the next few weeks as had a scan yesterday to determine if I have to start 2nd line. I would enjoy speaking to you on the telephone but do not quite know how to put my no out to you.
Saltire is a great idea. I never thought of that. I will see what I can do with a little help from my daughter or son.
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Ovacome younger women's ovarian cancer support group May 2nd Maggies Centre, London
Post-blockage diet. This may help.
Total bowel obstruction (may be upsetting)
