Need to shout

Just found out a treatment buddie of mine died another victim of oc,her name was fanny and she owned a place in merstham Surrey called fanny's farm it was a beautiful place to go,she was positive and always happy a joy to sit next to,we had our last avastin treatments together back in February she was 66,(I am so angry at the men in suits that make harsh decisions when it comes to the cut backs and lottery post codes that decide what and who can have treatment and were)do they not know they are playing with our lives,sorry but iam so very sad just had to have a shout.yvonne x

24 Replies

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  • So sorry to hear about Fanny. She sounded like a wonderful person. Shout and scream away Yvonne, that's what we're here for. I'm with you on the men in suits as well. Big hugs, Kerry xx

  • Thank you x

  • Yvonne you shout away as much as you want. I am so sorry to read of your friend. I get angry every time I come on here and read about this postcode lottery and these managers who, as you have said, are playing with our lives. Health inequalities are atrocious and just should not exist in this day and age. The health care should be the same no matter where you live in the UK. I do realise there are restrictions but I also know some lovely ladies don't have a choice. Grrrrrr I will join you in shouting I think. Perhaps we should arrange a March to number 10!

    Still back to your reason for shouting Yvonne, please accept some hugs from me ((())).

  • I am indeed sorry to hear of the loss of your friend. You must miss her terribly. It is the same all over, the men in suits call the shots on staffing levels. Avastin is widely available over here in Ireland which is no good to anyone in the UK.

  • Hi Suzuki. I was interested in your comment that Avastin is widely available in Ireland. Whenever I have mentioned it to my team it is just dismissed. Do you have to wait until they confirm that the disease is back before it is offered. As we are not allowed on the forum to mention either doctors names or hospital names I am guessing that I live in the wrong part of the country. Maybe I have got it wrong as to when Avastin becomes an option. I would be grateful if you could put my mind at rest on this one... Take care

  • Hi Molly O, I was given Gem and Avastin as a third line and I remain on the Avastin. I was under the impression that it is widely available in HSE definitely HSE South. Having said that, some one on the same with me requested that she could attend at a more local hospital in the South East area, but her onc informed her that Avastin may not be available in the smaller onocology units to the the cost, I was taken aback, She just found that having a scan and consultant and Avastin all in the one week meant three days of driving 90klms each way. She was trying to make life a little easier for herself by cutting the driving but unfortunately she was told it wasnt possible due to the funding in the hospital she attended. Maybe they might give it with more treatment and are holding off until then. I would keep asking everytime you see your oncologist and ask why not

  • I am so sorry to hear about the loss of your friend. I can totally relate to your 'men in suit's comment. My mum got diagnosed with macular degeneration and the hospital told her she couldn't have Lucentis because her MD was caused by myopia rather than age (she was in her mid sixties at the time). We were faced with the prospect of her losing her sight while some medical review board or other decided if she could have Avastin instead, so we had to go and pay for a couple of private injections, at a cost of almost £1000 each! Eventually they approved her treatment but if we'd have waited, it would most likely have been too late.

    I do wonder if NICE should be facing accusations of sexism/agism in the way OC drugs are not approved or prioritised. But that's an argument for another day.

    Condolences for your loss. You honour your friend by ensuring her life isn't forgotten and her passing isn't ignored.

  • So sorry to hear a about the loss of your buddy.Shout away ,we all feel like shouting the best of times.She sounded like a lovely lady with a fantastic attitude.hugs to you.x

  • I think its good for you to shout and scream sometimes. Losing someone dear to us makes us angry as well as sad and I also get angry with the drug companies who charge such exorbitant prices. So shout as much add you can

    Love Francesca x

  • I'm so sorry that you've lost your good friend. There are no words I can say that will really help. Just that I'm thinking of you and understand how you feel. I could scream and shout for you!!

    Sending a big hug and love,

    Solange

  • I'm so sorry for your loss, Fanny sounds like a lovely person. The injustices and inequalities make it so much harder to accept. We are in Ireland and my mam never had private health insurance, if she had she might have been diagnosed earlier and maybe it would have made a difference. Her prognosis is poor though she is struggling on. I don't dwell on it but it makes me sad to see the inequalities of a two tier health service, and obviously the UK has a different system, but with similar problems. Thinking of you.

  • I'm sorry for your loss Yvonne. I think it really hits home when someone you've met when going through treatment dies. For me it was a young woman, just 40 years old, and she died last summer, just a year after diagnosis. I knew her sister from work, just couldn't believe it when a work colleague told me a couple of weeks ago. I think my friend in work kept it from me as she knew the effect it would have on me. So sad.

    Your friend, Fanny sounded like a wonderful person, scream and shout all you like.

    On another note, whatever has happened to this site is driving me nuts! Why do we no longer have just ovarian cancer patients/carers on our site? Anyone any idea? Putting me off using it actually!

    Ann xo

  • I wasn't aware of this,why would anyone without oc other then family and cares be on here?

  • Hi Ann, somebody did post on this site in error, she obviously hit the wrong button on her keyboard and she was guided back to the section that she needs, if I remember rightly. I posted myself about a Hospital here now using cold callers to buy tickets for their charity. It would be a hospital some of us here on the site would attend with Ovarian Cancer. I attend one of the hospitals in that group hence my post. I just feel my health insurance is paying for my treatment, I pay my health insurance so why should I be asked to contribute more by purchasing tickets. It doesnt make sense.

  • Yes, but there have been a number that I have had, as I say with diseases I've never even heatd of!

  • Oh I have missed those for some reason, sometimes that can happen. I dont get notifications any more I have to come on to the website to check posts for past few months. I did discover that Healthunlocked also covers other illnesses. I checked because my hospital had me sent for tests and I was trying to figure out what these tests were for. Thankfully tests were negative but I still remain with OC but in good form at the moment

  • Glad you're doing well at present. Ann xo

  • Hi Anne. I have Primary Peritoneal cancer and was invited to go on this site by Ovacare at a patient day in Apr. PPC has the same symptoms and treatment as OC but is much rarer. This forum is a lifeline for those of us with PPC and I would hate to think that we were seen as intruders. I really hope you do not mean us as being on this forum has given me a new lease of life. I do not feel so isolated anymore when I read the positive contributions of the wonderful women on this site.....take care

  • I don't mean those with PPC, I have 2 friends with that form of ovarian cancer, its vasculitus, and a number of other diseases, some of which I have never heard of before that I seem to be getting. Certainly didn't mean you. Sorry if I offended you. Ann xo

  • Dear Ann

    Sorry for the over sensitive reaction . I have been so used to explaining PPC to people who never heard of it that I lost the plot. Forgive me . X X X

  • No need to apologise to me Molly. xo

  • I am so sorry Yvonne to read about your friend. Both OC and PPC should not be killing women in the 21st century. It makes me so very angry. If the men in suits were subjected to these diseases a cure would have been found a long time ago. For goodness sake they have split the atom and put men on the moon and still no answer. However I am hopeful that as we now have women heading up research there will be an end in sight. We can but hope that the experiences of all of us including your dear friend will help to speed up that day. May she rest in peace. Take care xx

  • Thank you x

  • I'm so sorry about your friend. I think this is the news we all dread, hearing that someone we have got to know and love through this cancer journey has died. It's especially awful if we feel they could have lived longer with treatment but the funds weren't there. So we do need to shout!

    If you haven't seen it, there is a campaign being launched by Target Ovarian Cancer

    to address the postcode lottery of treatments available for OC. You can write to your MP about it - see the Target website.

    All best wishes

    Madeline x

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