meeting with health minister

[poleglass]

just wanted to keep you all up to speed.have meeting with our health Minister.Edwin Poots in his office in Stormont on tuesday the 23rd. april. Will let you all know the outcome.My tumour marker up 15 to 41 not as worried as last time as it went up 69 then and I had to have 3rd. line chemo. Have had to wait over 4wks. on cat scan, not until the 19th. april. Have no pain in side like I did the last 2 times when it reoccurred so I am keeping my fingers crossed. I really do think the alternative medicine I have been taking ,is giving me the extra time. I had my last chemo 4th. October, that's nearly 6mths. now and the last time it was back in just over 3mths. Just have to keep the faith and keep going.xx

[Hidden]

Hi Una,

Best wishes for the 23rd of April, well done I will be thinking and praying for you. Love x G x

[poleglass in reply to Hidden]

thanks gwyn. we are all in this together.xxxx

[wendydee]

Hi Una! You are doing such a great job with the Stormont connections. All the best for the 19th and the 23rd of April. I hope that the rise in the CA125 is not too indicative of anything scary and that the feeling of well being continues. You are doing one terrific job!

Love n cyberhugs to you

Wendy xx

[poleglass in reply to wendydee]

thanks wendy. xxx

[Whippit]

Dear Una,

Best of luck with your meeting with Edwin Poots. It's a challenge to know what to ask for in these cash-strapped days. What would be your ideal in Northern Ireland? I'd like all GPs to be obliged to take the online GP training and an awareness-raising campaign.

I hope your health continues to be stable. What complimentary medicine are you taking? Perhaps they might delay the chemotherapy this time as you're not in any discomfort. My oncologist said she wasn't taking any action because I'm asymptomatic even though the tumours are growing.

I shall be thinking of you and hoping you get a good commitment on 23 April.

Best of luck and good health. xxxx

love Annie

[poleglass in reply to Whippit]

I would settle for a health campaign on ovarian cancer throughout n. Ireland and that all g.p. should have to do the g.p. module. At the meeting , I am going to request a committee to be set up to monitor the progress and make sure its kept in the public domain.xx

[Whippit in reply to poleglass]

Dear Una, That's really helpful. It's about the same level I would pitch my request, with an additional request to know when we will have a centre of excellence - or research centre for Ovarian Cancer up and running in Wales. Wales only Cancer Centre at the Velindre has no ongoing research into Ovarian Cancer. I would like to ask whether there are plans to join the Ovarian Cancer Action Research or other major research projects which are taking place across England and Scotland. This will enable women in Wales to take part in trials that might one day bring about a breakthrough in treatment or screening.

xxx Annie

[Hidden]

Dear Una

You're doing a great job. I really think you need to ask hard questions about the amount of oncologist time available. I understand the 2 oncs in the City both work part time. I had my last supposedly quarterly checkup last October. I'm expecting an appointment in April so that will be a full 6 months. I'm sure there are plenty of women who have more reason than me to be concerned about such long gaps and it's just not right.

Love

Linda xx

[poleglass in reply to Hidden]

Linda, my review was due on the 4th. February, a 3 mthly. review and I havnt still been seen. When I rang, I was told there was a waiting list backdated to july last year..I told the appointment clerk that I was supposed to be seen every 3mth.. and he told me to get my tumour marker done with g.p. and if it was considerably up to ring oncology and it would be brought forward.I done this, and it was up by 10. I rang oncology and my oncologist rang me and told me to get it repeated in a mth. and if it was up by even 1 she wanted a scan ordered. I done this and it was up by 5 so I rang and told them and they sent me a date for the scan. It will be 6mths. on the 4th. april since I was last seen .Its not the oncoligists fault, there is too many patients and not enough oncoligists to cope. I blame the health service, they obviously need more professionals but they wont put the money into it.its the same with the cancer centre. A new centre and obviously not enough scanners to cope with numbers hence having to wait so long on scan. the waiting is the worst part.I am going to mention it to Mr. Poots..

[Hidden in reply to poleglass]

Sounds like they definitely need to recruit another onc. Wonder how much hope there is of that!

It would be great if you had some more cases of delayed checkups to give the minister.

L

[lisarm5]

Hi Una, can I ask what alternative therapies you have been on? Good luck with your meeting, love Lisa x

[poleglass in reply to lisarm5]

Lisa I have been taking mistletoe extract drops, turmeric tablets, curcumin tablets, wheatgrass tablets grapeseed capsules and a table spoon of hemp oil taken orally.I hope this helps. ,

[citrine]

Best of luck on 23rd April Una. You are doing a splendid job.

Hope you continue well.

Love Mary xx

[Hidden]

Oh good luck! You are making waves beautifully, Una, keep on truckin'

Love

Sue xxx

[Jeanp]

I too attend the city hospital with ovarian cancer and am having 5th line chemo, Taxol weekly. I find every week i am up i see a different doctor. I know they are so busy but i like to see someone who knows my situation. before i started this chemo i didnt have any symptoms although my tumors were growing i was told by the oncologist to ring their secretary if i wasnt well and get an appointment. I phoned the City but it wasnt her secretary i spoke to and was told to told to see my own gp and they would phone my doctor to decide if i needed an appointment. I wasnt very happy about it. Anyway when i did get an appointment they admitted me as i had an infection and had had it for a while. x

[poleglass in reply to Jeanp]

I got taxol weekly for my last set of treatments and I got better results from it than the the combined drugs jean.MY scan results were better than the 2nd. line chemo. I was delighted.x

[poleglass]

Dear jeanp. I would love to meet up with you as I am not in contact with any one here in n, Ireland who lives in Belfast as the other 4 women I know sadly passed away. I am under dr. Sarah mc kennas clinic but my oncologist is usually Dr. Joanne Millar. I have to say, she has been brilliant and if I phone her secretary and leave a message she does phone me back.My review was due 4th. February and when I rang they told me there was waiting list back dated to july 2012. I was told to get ca125 checked and if it had risen considerably to get in touch to bring appointment forward. Done that and it was up 10 so I rang and oncologist rang me bk. and told me to get it repeated in one mth. and if it was even up by one they wanted a cat scan done. I did this and it had went up by another five so I have got app. now for cat scan but not until 19th. april which means I have had to wait 5wks. for this scan which is scandalousThat will mean it will be over 6mths. since I was last seen nd I am supposed to be on a 3mthly. review. Apparently there are too many patients and not enough oncoligists which isn't the doctors fault but the health services fault. I will be bringing this up with the health minister when I meet him on the 23rd. april. Whats the point of having a new cancer centre if there are not enough staff or scanners available to meet the needs of the patients.My telephone number is 07867690809 if you want to get in touch. I just finished 3rd. line chemo in October last year. I was diagnosed dec. 2009.x