Article in Sunday Express Magazine Today

Article in Sunday Express Magazine Today

A poignant article appeared in the Sunday Express Magazine today which included Sharon's story (Shazican). This brave woman lost her battle with ovarian cancer on 5th March. She had given a telephone interview a couple of weeks beforehand and her story appeared, with her family's wholehearted support, in today's Sunday Express.

The online article can be read at: express.co.uk/life-style/he...

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  • Well done, fantastic article even though it did make me cry xxx

  • Yes it made me cry because Sharon was so selfless. When I last spoke to her about the interview she said she was doing it for other women in Scotland and it had been a comfort to her to know that some women would have access to it now even though it was too late for her. I cried for her bravery and that of her husband and sons. However Sharon's legacy lives on and that's to be celebrated. xx

  • So very true Annie, Sharon, you and so many other women on here are making such a huge contribution to raising the awareness of Ovarian Cancer, the only good things to come out this life changing personal battle have been, are realising what is truly important in life and meeting such inspirational women I would never had the pleasure of meeting otherwise x

  • All the men and women who post on this site are an inspiration. It's wonderful they share their experiences and thoughts. When I met the Minister of Health for Wales he said I was a discerning patient and he gave the impression, wittingly or unwittingly, that the NHS and politicians - particularly in Wales - depend on the electorate being undiscerning and not questioning anything. The NHS in Wales is all smoke and mirrors and it's really difficult to find out anything.

    Thank goodness for all the men and women on this site who've posted and shared because every single one of them makes a contribution to awareness-raising and to the battle for fair treatment. xxx Annie

  • I managed to find one free of charge in Waitrose. I don't usually read the Sunday Express but it did come up trumps for our cause. xxxx Lots of love xx Annie

  • Yes, you put your finger on it Millie. Had Sharon been given Avastin we would know she'd had every possible opportunity to fight this disease. As it is we must live with that ghastly thought that things might have been different. Nobody should have to live with that thought. xxxxx

  • Thank you, Annie, for making these articles available for us.

    Makes me want to weep buckets for all those who don't get Avastin. I wouldn't have believed such an unfair system could exist until a little while back. Poor, poor Sharon, knowing she would leave her boys and husband too early. So glad you managed to get Avastin in the end. Good luck for Tuesday.

    Love, Solange

  • Thanks Solange. I'm less selfless than Sharon. I decided I needed to sort out my own problems first because I take the view if you haven't looked after yourself first you can't look after other people. Yes I've got access to Avastin and now my mind is clear to continue the campaign for others. I can't imagine the crushing hopelessness of women who fail to get Avastin for themselves yet Sharon continued to lobby for others. I know it gave her some comfort to hear that the Scottish Government had started to grant Avastin - though I'm still not sure on what grounds. It isn't any clearer than the judgement process in Wales. Northern Ireland continue to refuse to fund Avastin despite leviathan efforts on the part of Una Crudden. xxx Annie

  • I must admit Annie that I am very confused... I understand that Wales is a problem with Avastin and Scotland too...

    However "daisies" who is a member on this forum has said on more than one occasion that Avastin is widely available in Northen Ireland in fact throughout Ireland ...both private and otherwise... and that she is getting it herself...so I really don't understand the contadictions perhaps you could shine light on this. ;-) :-/

    Love x G x

  • Hi Gwyn, Yes, I believe Daisies lives in The Republic of Ireland and not Northern Ireland. In the Republic of Ireland Avastin is freely available and I believe their healthcare system is somewhat different from ours being a private/state mix. You'd think people in Northern Ireland could just get an address over the border as I've done in England - but perhaps it's more complicated over there and it would be like us trying to get healthcare in France. (Apparently you can but you would only qualify to get the same treatments and therapies as you would in the UK so no point in the Welsh moving to France! lol)

    I can confirm there is no Avastin available in N Ireland except for two women who were receiving it in England and have been granted it exceptionally when they moved to Northern Ireland. Una Crudden campaigns tirelessly for access to Avastin along with a national awareness-raising campaign for Ovarian Cancer which they promised her last year. In the absence of this she's started doing talks in schools.

    I think this is all accurate .... Daisies where are you? Is this correct? xxx love Annie

  • Thank you Annie,

    I did try to get daisies to expand on this, but she didn't explain this... and it makes more sense to be now cheers love x G x

    PS I know Una campaigned for it's use, but I didn't realise that daisies lived in the South, doink !..... I was utterly confused and I am now glad I asked :-)

  • Hi Whippet. Oh yes, I am still here - alive & kicking on Avastin. I posted earlier about living in southern Ireland and that in future I must make that clear. It is now nearly 17 months since OC returned and my 18th session on that drug only - so I would think I am living proof that it works. Thankfully, I am one of the women who can take it. Hope you are keeping well. Regards, Daisies

  • Dear Daisies, I'm so glad Avastin is working for you. How 17 months remission sounds amazing. I've just completed my 2nd line of chemo and was given the impression that I shouldn't expect such a long remission as the first time but that Avastin should help.

    It's good to have finished chemo and I haven't yet started my maintenance Avastin so I don't know yet whether I'll have any side-effects from that. Hopefully my first dose will be quite soon and I'll be following in your footsteps. I don't suppose you saw the article in the Sunday Express which featured a lady called Ann who is the longest surviving patient after Avastin in the world.

    Love, and continued good health. xx Annie

  • Hi There. Read the article & it is heart breaking to read that women have to move house and/or rent somewhere else so that they can get the best options in drugs for OC. I know that the Avastin is buying me time - I welcome that time and now don't worry too much about the future. I sincerely hope that you will also have the same good benefits. Daisies xxx

  • Hello All. There is some confusion about availability of Avastin in Ireland - obviously when I refer to Ireland, as I am living in southern Ireland, I am only familiar with our health services & availability of drugs. I can confirm however that northern Ireland has the same health service availability as UK. Will try & remember to specify southern Ireland in future. I have just read the article about Sharon and it is so sad - it makes me realise that we have a great service here. While we give our about delay in A&E etc - with cancer there is immediate access to consultants, tests and treatment. I know also, that if new treatments are discovered, we have access to those also. I think of Sharon & her family and that here address could be the reason why Avastin was not available.

    We have good research facilities also and while we grumble at times (I think that is natural with most of us) - in my city, with a population of 140,000 - there are 4 hospitals providing cancer treatments. Best wishes to all who are travelling the same road. love Daisies xxx

  • Dear Daisies, (I love the name)

    Thank you so much for adding clarity to this.... it is much appreciated, (I am sorry for my ignorance)

    And I think it was only me that was confused. LOL

    I am so pleased that you get the treatment you get, and wish you well love x G x

  • Its so unfair, Annie I admire you so much and indeed so sad for Sharon's husband and children to live without her, this disease is so cruel in many ways xx

  • Do you know Carol, I just can't imagine why there isn't a massive riot outside the glass walls of the Wales Assembly Government. Cancer affects us all and we just don't have access to drugs and treatments that are available in England. I'm convinced this is at the core of Wales having the worse 5-year survival rates for Ovarian Cancer and indeed all cancers. Ovarian Cancer isn't rare enough for Wales not to have any treatment at all so we're not referred elsewhere, but rare enough not to have a centre of excellence. Someone in a pretty high-up place actually agreed with this idea.

    I have a huge respect for the Minister of Health for Wales. He promised a review of the allocation of Cancer Drugs in Wales last May but said it was not a popular decision. Not popular with whom? With the electorate who have cancer? With the electorate whose family members and loved ones and friends who have cancer? No, I believe it is with the people we elected or who are employed to look after our interests. They want to protect their backs and to deflect from the bad decisions and policies they made in the past.

    How we get around that problem heaven only knows. That's why I'm accessing treatment in England. It will give me the additional years hopefully to continue to rattle cages and ask awkward questions.

    But come and meet the wonderful ladies at the support group. We'd love to get to know you - and I promise the support group is about friendly chat, having a laugh and a moan, and perhaps staying on for a bite to eat.

    Sending loads of love xxx Annie

  • I would love to meet you lovely ladies and will aim to make April's meeting as I will be in Plymouth for this one, xxx

  • That would be brilliant Carol! xxxx

  • What a heart breaking but inspirational story . Thank you so much for posting Annie . Glad to see that symptoms checker was also included

    Ally xx

  • Does it mean Ally, that you might have access to Avastin if it's suitable for you?

  • Hi Annie hope you are doing well x I have been getting avastin via private health care and thank god every day that I have been able to have it x

  • Thank goodness for that Ally. I'm so glad you have it. How are you feeling on it? I have lower back and joint ache but not sure whether that's chemo as I've only just completed the course so it might be I'm still having side-effects from that.

    Do you know where the criteria for allocating Avastin in Scotland are listed? xx love Annie

  • Hi Annie . Hope pain settles . I had really bad joint pain with last lot chemo but not this time around and from experience took a few months to settle . I am doing so much better . Last chemo Thursday gone and awaiting follow up scan so here's hoping and praying all good . I have had a bit rough ride this time around . Presuming all related to chemo and disease but will probably know better when have first avastin on its own . I didn't know it was available at all on the NHS so not sure criteria . Don't know if there would be anything on the scottish consortium website

    Ally xx

  • Dear Ally, I'm keeping fingers crossed for you that you get good results. I'm really sorry you weren't so well this time. Let's hope now the chemo has finished you'll pick up very soon. I had my last chemo 2 weeks ago and feel much better already. It was really tiring this time and I think it's tough just dealing with relapse and subsequent lines of chemo.

    On and up!!!!! Sending loads of love. Please let me know how you're getting on. xxx love Annie

  • Hi Annie hope onwards and upwards for both of us x totally agree so much harder 2nd time around but hopefully we will both continue to gain strength every day

    Keep in touch

    Love ally xx

  • Well done, Annie- just read it online. I'm glad that Sharon managed to speak to them too- it was so sad losing her.

    Love

    Anne xx

  • It's a great article Annie and thank you to you. My heart was and is heavy thinking about beautiful Sharon ... I know exactly the feeling of injustice which surrounds this disease. I was thinking that things are changing for the better and I'm so pleased about that but it's not been a quick or easy road. I'll go to bed tonight and think about Sharon and her campaigning and say a thank you to her. One of these days, a cure will be here and it can't come too soon. We have to keep the message alive and so many women are doing it in their own ways whether it's through the media or politics, through raising money, or through writing or poetry. Thanks again Annie... T xx

  • I don't think a single person reading the article - not even hard-hearted politicians - wouldn't stop to wonder if Sharon might have been with us now had she had access to the drug her oncologist recommended. What is alive, is Sharon's legacy and I just hope the campaign continues in Scotland for Avastin to be available and for a fair means of allocating it. At the moment it's the same as Wales - smoke and mirrors.

    xx Annie

  • Thanks, Annie for the article, despite I was feeling very sad at the end due to Sharon. She was yonger than me one year! She had so many things to live!

    On the other side, I´m happy to know your treatment is going well, and yours tumours had shrunk.

    Love, Fernanda

  • Fantastic article. It made me cry, both with sympathy for the suffering, and rage that these drugs, any drugs, that can help us are there, but allotted by some arbitrary scheme we have no control over.

    This drug allocation should be known widely and campaigned vigorously against. Part of the problem is that the people who are most affected by this are often so unwell they have no energy to do the campaigning. An effective arbitrator is needed to stand entirely for the patient when NICE ( who often aren't 'nice' at all!) make their decisions.

    Alex XXX

  • Alex what you say rings true in my ears. The NHS bodies now have the power to 'respond to local needs'. Perhaps it's just that the Welsh Government don't think incurable cancers are important or essential and they're focussing their funding on other diseases. Perhaps they're broke. I have a horrible feeling they have cut back on cancer drugs because the drug fund is specifically for incurable cancers and you're right. People with an incurable cancer often don't have the energy or time to be able to make a fuss.

    The article is well-timed for me. I'm attending a summit with officers of the Welsh Government on Wednesday along with Britain Against Bowel Cancer and Target Ovarian Cancer. The charities that support people with incurable cancers are joining forces along with patient representatives hoping to bring pressure on the Government of Wales to introduce a drugs fund and a fair means of distributing those drugs.

    Better organisation and funding of oncology services in Wales wouldn't go amiss either. I'm appalled that patients are denied other drugs too. Thank goodness for this forum because it is here that the inequalities across the UK have been revealed.

    xxx Annie

  • Something sprang to mind after reading your response Annie. As far as I know the NHS still operates "at the point of need" I believe. I am not versed in the legalities of this term, and I suppose legal minds could argue the interpretation, but at what point in any disease or illness does the 'point of need' cease to apply? It's a moot point that better minds than mine, especially whilst under the influence of Carboplatin, could argue over!

    I still think we are unbelievably fortunate to have the NHS and will defend it to my last day, but the service we all take so much for granted will only ever be as good as we - the consumers - and the medics working within it, who are also consumers as well, insist it stays on course.

    Alex XXX

  • Again I totally agree with you. The NHS is a fantastic brilliant organisation - and of course it was established by a Welsh politician and based on the welfare system set up to support miners. How achingly sad that Wales' NHS lags behind the others in its care for Ovarian Cancer. I would never criticise the NHS or the wonderful people who work in it. I don't think they have an easy ride. I'm critical of the politics governing the NHS.

    I do wonder about the 'point of need'. One woman in our support group was told her hospital didn't fund a particular treatment after the first line of chemotherapy even though it's readily available in England. She argued the case to have it. (We are fortunate in having access to a professional who gave us the magic words) and hey presto the treatment was granted.

    I wonder if we'd managed to blunder across the 'point of need'. mmmm interesting thought. I'll see if I can find out more on the NHS Choices (England) website. It's packed full of brilliant information that of course Welsh people can't access unless they are like one Assembly Member who told me they use a relative's account who lives in England to access the information.

    Note to the people of Wales, ask a friend who lives in England whether you can use their account to access NHS Choices (England).

    xxx loads of love xxx Annie

  • David is so very brave, and I suspect we have not heard the last of that family. They will keep beating the drum for Sharon. Well done Annie, your story and spirit are both uplifting.

    Love

    Sue xxx

  • What a heartwrenching article by David. I applaud him! Let's hope it sparks the consciences of some of those politicians! And well done Annie! I know I can never have Avastin as, apart from now being on my 4th line treatment, I have lots of bowel problems and Avastin is not suitable for me anyway, but it should be made available to EVERY woman who is!!

  • You make a really important point that the article actually missed - and that is Avastin is not suitable for all patients and particularly if they have bowel complications or high blood pressure. It's vital to get that message across. There are also women who wouldn't want the drug.

    As I understand from my oncologist Avastin has had great results at a later stage of ovarian cancer so it may well be we will see some women getting it who might otherwise have been excluded from the current NCDF criteria. xxx love Annie

  • Thanks for drawing our attention to this article Annie. So sad that Sharon has lost her battle with this horrible disease but as you say her battle has given the woman of Scotland the chance to have this drug. We don't have it in NI either. Una Crudden has been battling with our Assembly to get it made available here. Another remarkable woman!8 I know you do a lot for the women of Wales. It's dreadful that we have to fight for this treatment. I often wonder what would happen if one of the powers that be suddenly had a wife/mother/daughter/sister diagnosed with it however I would not wish this on anyone. Thanks again. Ann

  • The powers that be who have lost relatives to cancer - my own MP included - do care and are battling for a better way of allocating drugs in Wales. Unfortunately they're up against the old guard who don't want the mistakes of the past highlighted by having a shake-up of the NHS policies in Wales. Not my opinion but the opinion of an Assembly Member. Frightening. It's good Una has you to support her. It can be a lonely experience campaigning for fair treatment. xx Annie

  • Thank you Annie for posting the link....(I thought I'd posted earlier, but can't find it)

    I still feel so sad about Sharon :-(

    Lovely article love x G x

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