Hi all, I had my review yesterday with the youngest Registrar ever but she was so sweet and kind. I know they have to learn. My scan is stable but she was so enthusiastic for me to have full bloods done, I just had to oblige. It really hit home how long I am living with this illness but living is a good word really when you consider the rest. The hip is settling down a bit and for now I have stopped the painkillers. I do have a sinus infection for which I am taking horrible big antibiotics, and staying in out of the wind. I think I will have to purchase a woolly hat for the winter but its really not my scene, However if the sinuses are playing up I obviously need to keep warm,
Now I am stable I am going to return in force to the question of advocacy for Ovarian Cancer. The Public Patient Involvement Group of the Irish College of Gynae Oncologists takes place in Queens University Belfast in November 9th and 10th. All gynae patients can attend the workshops and also any of the lectures. You can live in any part of Ireland to attend and I would encourage anyone on here from Northern Ireland to make a note in their diary and message me. I do not have the full details as yet just the dates to remember. The other patient rep and myself have completed our role in Diagnostic Guidelines for Ovarian Cancer and it seems that it was well received by the HSE. The Minister is seeking more patient advocates to sit on committees on Cancer Care if any one is interested. This is a wonderful step to include patients opinions on patients care, I hope everyone is keeping as good as they can be and I wish those on treatment the best at the present time.
Thank you, Suzuki, for your commitment and the use of precious energy to be involved as a rep for patient care. I live in the wilds of Co Tipperary, so won't be able to make the dates in Belfast but look forward to hearing your report back in due course.
Hi Marie, although you are up there in Tipp hopefully there will be a coffee morning or Patient Information day you can attend at some future stage. I know you have the Circle of Friends and I believe it is fantastic. Keep an eye on here for information from the Admin or go to the Ovacare Website for up coming events. It does help to meet other patients in the same position as ourselves and get that strength and support
Hi Joan, extremely glad to know of your latest results. I do understand that hips dont lie and praying that you will soon come out of the pain. Gauri is doing well just now and is on orals Gefitinib and Capecitabine, more for her pleural effusion which has reduced considerably and is at shall I say below 5% (very layman term). Her CA 125 is down to 66 from a high of 250 within three months, the colateral damage being slight hair loss besides small cuts on finger tips and feet and darkening of finger nails. Hoping that she gets below the 35 mark within next three months which will show up as NED in Imaging.
Always happy to hear from you Joan and wish you all the best.
Hi Naimish, thank you so much you are always so kind to me. I am glad Gauri is doing well and definitely the 125 doesn't tell lies while on treatment so that is a fantastic result. Yes in one way it way a nightmarish summer. I had to wait to see if the Radiology Oncologist in Dublin would treat me, my gynae liason nurse had to dig out all my records. However no one told me when the pain would go and I am not patient at times and I was quite disheartened at times, But now the pain is gone, it doesn't matter any more and I have to move on
Thank you Sheera, I feel good now the best I have felt in a while to be honest. The pain was bad but then I had it for a while before I went about it. At the same time my scans last summer had been stable so perhaps it was minute and not picked up until I complained.
Great news Suzuki and long may stable continue! Good luck with your patient advocacy work it’s so worthwhile. Love
Madeline xx
Thank you Madeline, I am off to Malaga on Saturday for a few days and looking forward to it, Malaga city is mostly flat and easy for walking, Hope you are doing okay
That is great news that your radiation surgery was a success and the pain has gone, Enjoy Malaga it will be a lovely well deserved break. It is brilliant the work you are doing on the diagnosis of ovarian cancer and having real patients views Gps need to be educated more on the symptoms for more ladies are caught on the early stages as too many are mis-diagnosed for too long.
I agree with you on that, some gps don't pick it up fast enough and it is important that we speak and tell them there is something wrong. Mine picked up instantly while I thought I had muscle strain from washing the dog, God help my innocence. Ovacare and Ovacome have leaflets that we can access and leave them in doctors surgeries, libraries or even Womens Groups. I know the guidelines for gp referral in Ireland is overdue a review so that will help whenever it happens. Women have to lose the fear and speak to their doctors while also being insistent symptoms are not IBS
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