Wish me well. Having kicked ass re healthcare in Wales I have a meeting with the Health Minister Mark Drakeford and my MP Kevin Brennan who sits on the APPG for Ovarian Cancer at Westminster.
I was going to take your advice and put my feet up, have a pedicure, a glass of wine and a snooze in my favourite chair - but now I'm propelled into a frenzy of phone calls. Target Ovarian Cancer have given loads of helpful advice. I'm reading learned papers on health care written by Professor Mark Drakeford before he became Mr Mark Drayford, an AM, and Minister for Health for Wales. I'm busy swotting up facts and figures and I have to be prepared to repeat the story I told at the APPG. That of the four women being treated so inequitably by three different health boards in South Wales.
I'll also pronounce bevacizumab correctly this time thanks to Gwyn sending me the URL to a pronunciation dictionary. Beva-sisu-mab. I could suggest a fairer method of allocating the drug in Wales is to give it to those of us who can pronounce it!!! lol
Ahhhhh!!!!!!! Help!!!!!!!!!
Love n everything to you all, Annie xxxxx
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Crikey, Annie as if you have not got enough to remember! I must say I chuckled to myself at the thought of you mis pronouncing Bevacizumab, why they make these names so awkward to say!!!
Wishing you good luck and a massive support from everyone who has encumbered prejudices over treatment all over the country.
Good someone's taken some notice and improving the current postcode lottery. Not in time for me though - I need bevacizumab in the next few months or I shall become ineligible as it's not available after 1st and 2nd line chemotherapy.
Hi Annie wishing you all the luck with all the projects you are taking on. I hope you get Bevac there we have a new name for it that even I can say and spell.
Wishing you well goes with out saying ...... and yes you could be sitting there with all the pampering that you could have and a few glasses of wine as well but you are not again thinking of your self but of others in your fight against the unfair treatment of OC sufferers .
Best not to have the wine till you have mastered the pronuciation of Bevacizumab .....
bvvvzziziizzzmb I might as well be in my cups for all that I pronounce that word!!!!!
Thank you for the good wishes. I do think of myself. I'm plotting my escape from Cardiff and the Vale NHS Trust. That's really selfish to leave Martin here in Cardiff while I gad off to London from time-to-time in the hope of more years of life. He's such a wonderful support to me and encourages me to do what I can to get better treatment. Without all his ideas I couldn't start to think this plan through.
Without his support I wouldn't be doing half of what I do.
Hey I'm feeling a bit sorry for myself thinking about abandoning what I have here at home even though the move isn't permanent. Once I arrive at a critical stage of this cancer journey it won't matter a jot whether I'm at the most leading-edge cancer centre in the world or in the cancer centre here at Cardiff. Probably of the two Cardiff would be the better option for end-of-life support.
Yes I so agree with you that we're indeed lucky women if we have other halves or supporters.
Martin makes me laugh. I posted up about the magic tomato plant this morning. Where would I be without him?
xxx Love Annie
Well done in your crusade Annie.
You wont abandon Martin for long. Treatments?/trials only last for short periods and there will be times when you can visit Cardiff and Martin London while you are having treatment. Plus haven't you a wedding to plan for too.
Keep strong dear friend. We are all so proud of YOU
Thanks so much Sue. We do have a wedding to plan and the exciting if rather unconventional news that the bride is expecting a baby girl! Apparently this is quite normal these days. The baby is massive already - parents are both above 6'! Let's hope they've got the dates right or the bride and groom will be in the maternity unit while we're all celebrating their nuptuals.
There are so many wonderful things to look forward to even as we progress along this journey. Treatment is often just one or two appointments every three weeks so I shall still spend just as much time with Martin but I shall also get to see more of my lovely children, my in-law children and my grand-son in London.
There are always plusses if you look out for them. Friends here are one of the major plusses for me.
WELL DONE, Annie! you truly are a wonderful example of fighting for what is good and just. Martin sounds great, I'm sure you won't have to be away from him for long. maybe not at all if all your pleas go in the right direction. will be hoping for the very best of outcomes for you, in your meetings and in your ongoing fight against the b*&T^*# disease.
Thanks so much Wendy for your support and good wishes. The meeting with the Health Minister and MP is an investment for the future for women in Wales. It's too late to help me but I'm in the fortunate position of not having to put up with the vagaries of the health system in Wales. I think in walking away from it hoping for better outcomes I gain strength. I don't think I'd still be campaigning if I were stuck here. It would be too agonising for bear.
The good news is that the Health Minister for Wales has announced things will change. I wonder what he'll think when I tell him 'thanks, I'm really pleased about that but it's too late for me. I'm off to England where I can access better health care'.
Once I've settled in a new health area I'm not giving up the cause. I shall be shouting about it until we get fair services or we accept inequality and become a nation of healthcare travellers roaming round the country getting the best on offer. What a thought! xxxx love Annie
What a thought, indeed! I'll be thinking about you in your meetings, Annie. Clive says ti wedi penderfyni. Not rude..... It means you're determined, you have made up your mind!
Been quietly following your recent posts. So YOU GO GIRL!
Health inequalities should not be here at all - wasn't the nhs set up for everyone to be treated the same? It's very quickly going down the pan!
I lived in NE Scotland til 1999 when I remarried and moved to London. My GP in Scotland said I would see a huge difference in care and I stupidly thought he meant for the better. How wrong I was... Though I have to say as a family we haven't had to complain much.
Annie, you can do this as you have us all behind you kicking your ass ! Good luck
Wow Sheila - you are proof that there can be better health care in the devolved administrations than in London. I'd love to hear your story. I rather think it depends on where you move in London and what your needs are. I've been searching round for a decent GP in London and I'm lucky enough to be able to move close to one that will treat me well. Like all things in London the quality of the service is so often commensurate with the value of the properties. One of the major drawback of relocating, and something that worries my family, is losing my GP whom I've known for 12 years or so and I'd trust with my life. I wouldn't have a bad word said about my GP practice.
What is your cancer centre? I'd love to know why the treatment is poorer than NE Scotland. I would agree that at a certain point in my cancer journey care in Cardiff would probably be better than London for all sorts of reasons. Easier to get about, pace of life, good community neighbourhood, kindness of staff and the fact that they get to know you in a hospital as small as our main cancer centre in Cardiff.
The urgent problem for me is that the drugs and surgery I would like for my first relapse isn't available in Wales. I rather think things are different in Scotland as you have two centres of excellence to my knowledge in Edinburgh and Glasgow and perhaps others further north.
Please do send me information if you can. The problem is we have no statistics available in Wales. There is no data available on survival years and it's unclear exactly how drugs are made available in Wales. This dirth of information makes me feel uneasy. If I look up the statistical information on cancer provision in England London hospitals come at the top of the list. I reckon it's a safer bet to be in London than Cardiff. Perhaps when I meet the Health Minister tomorrow he will be able to provide details that will persuade me otherwise. That would be a good outcome but then pigs might fly!!!!
I probably confused matters Annie - the care I meant in Scotland was general treatment. I didn't have Cancer then. The waiting lists in general for any treatment for any condition were much shorter than they are down here. But that was 14 years ago and I do believe that lists are getting longer up there now too. For example I am waiting for a physio appt - been told it will be at least 12 weeks.
I have family members in Scotland who have or have had Cancer - I believe Prostrate and Non Hodgkins Lymphoma (sp?) - and I know they are well cared for in Aberdeen.
I had my op at UCLH under Miss Macdonald and Mr T Mould and I have to say that I felt totally as ease under them both. I was referred there from my local hospital who don't treat gynae cancers but to be honest the journey to UCLH from our home is not that long. I have since been transferred back to our local for after care and get annual check ups that fill me with dread :(.
I have recently lost my GP (she took very early retirement due to ill health) and I have to say that we are struggling as a family at the moment as the surgery is using locums to cover her hours at present. My hubby is current undergoing tests as he has a paraprotien in his blood (could lead to Myeloma in years to come) and we are looking to move surgeries unfortunately. Not easy finding a new one down here that we can trust with our lives.
You must look at UCLH if you are serious about the move as I think they recently opened a new cancer centre (don't quote me on that tho).
I just wish I had more time to dedicate to your cause but with two grandsons under 14 months my time is tied to them and my fav hobby of cardmaking.
I would love to send you some cards to sell at some of your meet ups if you are interested. DO let me know Annie,
I was told about the Find GP Services website which is available in England only of course gggrrr! However it might help you.
Click on nhs.uk/Service-Search/GP/Lo... and enter your postcode in the box. It will list your nearest surgeries and you can check out if there are any reviews of it. Nothing like personal recommendation.
I'd be happy to sell your cards. Are you raising money for an ovarian cancer charity? I'm afraid I will not engage in further fundraising for a particular charity as I was very unhappy about how a donation given in Wales was used which wasn't in accordance with the donor's wishes. Perhaps I was a bit naive and should have asked the donor to be precise about what he wanted. The bitter pill has now been swallowed.
I must try to PM you sometime over the weekend. So glad to read you came away from your meeting positive - sounds like it was very interesting for all present. I once wrote to my MP about OC and I have yet to get any response. Think I have different party one now so may try again. Just not very good at composing official letters.
It came about as my MP is one of the stalwarts of the APPG for Ovarian Cancer at Westminster. He had a copy of my presentation and had passed it on to the Minister for Health. Just shows representations to politicians can really effect change. I'm quite overwhelmed just thinking back over the last 9 days. There has been progress but not in all the areas I'd hoped for.
I've learned so much and people have been very kind - both at Westminster and here in Cardiff as well as all the support and encouragement here on the HU site.
Sadly the progress so far doesn't mean we can hope for the equality of treatment across the UK for some time yet. Now I can understand why not. That will happen when a cure is found or at least a better way to manage ovarian cancer in the long term. I'll have to document the argument some time but the words need to be chosen carefully. Meanwhile every one of us who takes part in a clinical trial is helping in their own way to discovering a cure for this disease.
I'll look forward to reading your PM. xxx Love Annie
All power to your elbow (or mouth) Annie.
How much does NICE itself cost?
Has anyone evaluated the social and political costs of its various dubious decisions?
How much does it cost to translate NICE's output into Welsh (and probably Serbo Croat and Sanskrit as well)?
Where is the added value in NICE, as opposed to recommendations made by the Royal Colleges in consultation with the Health department?
Having spent weeks bemoaning the drought here, the heavens opened today upon the dogs, me, the washing. Our home now looks, feels like and effectively a mud bath.
I am off to bed.
Tiocfaidh ár lá . (Irish gaelic - it means our time will come.)
Dear Chrystyn, Interesting your question about language. Traude was telling me how health-care operates in the Netherlands. They don't translate their communications into any other language. They take the view that if you live in the Netherlands you need to speak Dutch. Being aware of the horrendous costs of translation services here in Wales I'd imagine all the translations we do here in the UK NHS to numerous minority languages costs a small fortune.
Hi Annie sounds like you have really been kicking ass lol. Good on ya gal, you ate such an inspiration. I think they have really been made to sit up and listen. I hope finally you get the treatment you need. Shame you have to go so far to get it. Hope all goes well tomorrow and you give them what for. Am sure their ears will be curling after you finish with them tomorrow lol. Good luck and lots of love keli xx
The Health Minister of Wales might not like my reminding him that statistically my best chance of a five-year survival is to leave Wales and relocate to England. They can't argue with that statistic as it's true. Only shame for me is that I didn't realise it two years ago when I was diagnosed and when it might have made more difference.
I think all of us living in the devolved nations should be asking whether we have a leading cancer centre on a par with the Royal Marsden, Hammersmith, etc. The answer is definitely 'no' in Wales and it's something I will suggest they look into. Wales excels at mediocrity.
Wishing you good luck and thankyou for all you do, you speak for us all. x
Hi Annie, you know my sentiments. GO KICK AS MUCH ASS AS YOU NEED TO....DOESN'T MATTER WHO'S ASS.
Like you it will come too late for me but I have 2 daughters and 2 granddaughters that will benefit from any changes made and hopefully they would not have to up sticks and move to a different area to access better treatment
Well, we're lucky living so close to the station in Cardiff as that will give access to 2nd opinions in the Royal Marsden which Cancer Research UK named this morning as the top centre of excellence. I rang them this morning to ask whether I could take part in clinical trials over the border in England. Apparently it's possible with a rare cancer like ours because they can't get enough women to trial. However it's fraught with difficulties and is dependent upon your consultant agreeing to being referred. Perhaps that's why Rachel hasn't referred me to the Desktop trial which is currently recruiting in Bristol.
The problem is if you have a trial in a distant hospital there's a significant possibility that you'll have serious side-effects that need monitoring and treating. This has to be done by your local oncologist so creates additional work involving him/her in a trial that she's not agreed to be part of in the first place. There are real concerns because if you turn up at A & E in your home hospital and they're not aware you're on a clinical trial they might not give you the right treatment.
A case I'm aware of is a friend who had the Sugarbaker Technique done in Basingstoke. She then broke her hip and A & E in Cardiff put her on morphine. It nearly killed her as she's had her pancreas removed and cannot tolerate strong painkillers. You'd think someone with a medical qualification would have checked her medical records! She was also told to have a CT scan by staff at the Velindre but luckily she remembered the instructions from Basingstoke that she must not be subjected to radiation for at least 12 months after her radical surgery.
There are huge risks taking part in trials outside your own hospital area.
I think living in a devolved nation we would be well advised to invest in private health care. I think we need to assume we don't have a home for life in the same was as we no longer assume we can have a job for life. We have to adapt because the money isn't there to provide the health service we need. Pragmatic advice from an important person this morning.
The alternative is the 50% tax plus additional 100 Euros per month paid by everyone in the Netherlands. This provides a modern and efficient health-care system. There must be a good half-way compromise between the different health care systems in Europe.
I feel as you do that it would be good to kick ass if I knew who's ass to kick. By now I'd be kicking the ass of every ass who voted for devolution in Wales!!!!!!
Hi Annie, as i said in another post, the UK health authorities do not consider trials/research from non english speaking countries, i.e. Germany regrding mistletoe. over there the long term survival rates are much higher than here, they administer mistletoe (intraveniously) prior to chemo, here they dont like you having mistletoe whilst having chemo, it makes a big difference apparently.
That's interesting. My homeopath said there's no difference between Iscador being administered orally or intravenously, and that she would continue to prescribe it during chemotherapy but would add other remedies to help with the side-effects of chemotherapy.
It just shows there is a lot of dissent in all medical opinion.
I'm still glugging my Iscador drops. I tip them straight into my mouth these days as it saves leaving some on the spoon. Who knows, it may well be helping prolong my remission except I'm very careless and I often forget to take the stuff.
I'd be a terrible subject for a clinical trial. xxxx love Annie
I can be a very nice person sometimes (lol). It really was a very helpful and genuine discussion. Of course as soon as I got home I immediately sent him my list of points we'd discussed and to-dos after the meeting. Men sometimes need a bit of help. hee hee
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) well here's wishing you well. 
