Next patient day planned for 23rd April on clarion in Cork. If anyone has any suggestions of topics they would like covered please let us know.
Thanks
Sharon
Next patient day planned for 23rd April on clarion in Cork. If anyone has any suggestions of topics they would like covered please let us know.
Thanks
Sharon
That's great news Sharon.
Most attendees have a diagnosis, had surgery and are in the middle or finished treatment - so presentations on staging, surgery, chemo can sometimes be a bit grim and bleak.
Presentations re coping, surviving, living with and dealing with emotions, family, finances, health issues while you have ovarian cancer would be really helpful.
My pharmacist has taught me so much about how different drugs work - all the different painkillers, sleeping tablets, antideoressants, anti-emetics, constipation/diarrhoea drugs ect - we all need these at some time and understanding what's available might help people?
My counsellor used the internal family system model to help me separate the part of me that has cancer from the many other parts of myself, mother, wife, sister, daughter, my career, my hobbies ect Ended up that the part of me that has cancer is a small part of a way bigger picture! I had no idea there was so many approaches to counselling - maybe some info on that?
Typical post chemo complications - what to look out for re: dental, joints, bowel issues, adhesions, heart/kidney issues after several lines of chemo which most people at the presentation will be facing as most are advanced stage.
Keeping a sense of hope is so important, the health system feels like it's at breaking point - especially when you're in a hospital in a regular basis - as many of us are - and personally, I feel that the more informed I am, the more in control I am - that's what I find so brilliant about your Patient Days and thank you all for the ones to date and for what ye do for us ovarian cancer patients.
I think Missfitz has highlighted some great ideas and has more or less covered everything. I myself could not think of anything but when I saw what Missfitz wrote I have to agree with her. Oh to have a young mind. I hope to be there as I love the Patients Days, but to soon to say for sure yet. Kittie.
Hi Sharon, I agree with MissFitz, we dont need to know staging and jokes about Angela Jolie because to be honest, I dont give a hoot about her. We are patients with a serious illness and we need hope, we all need hope, Typical chemo side effects would go down well for those starting on this journey and also touching on the more serious side effects of chemo as already suggested. I agree the Health system is at breaking points and no one seems to care. I am lucky I have a brilliant kind oncologist but if he breaks, where will we all be. It is also important to be informed not to be drip fed on a need to know basis. Perhaps a counselling session midway through the morning on coping skills and how to focus on things outside Cancer.
I agree 100% with Missfitz . We need 2 give time to dealing with the real issues like surviving .. Coping and the knock on effects of 3 rd and 4th line chemo . We have done the staging etc an sick of it !!!! Thank you Sharon for that we have now vented !!!
Sorry Sharon, I didnt mean to preach but reading back my post, I realise I have done so, But perhaps it might be good for us to have a talk on coping skills. This is something which we would all benefit from. Maybe a half an hour of Mindfulness for those who would prefer that. Mindfulness does stop the words from becoming thoughts, Thanking you and Ovacare for your continued kindness to us all.
Crikey - hope my post didn't sound preachy either! I would like to apologise if it did and reiterate how much I've enjoyed each and every Patient Day - they've been a lifeline for me and the reason me and my family worked so hard on fundraising. Thank you Ovacare for all support to date - keep doing what you're doing!!
Thanks Ladies for the feedback. We will try and facilitate. MissFitz we have tried before to get a pharmacist to talk about the drugs and we didnt succeed getting anyone. Your pharmacist sounds like someone who could cover this, do you think they would be interested in doing a session?
Hi Sharon. I asked my pharmacist this morning who nearly collapsed with the stress of the thought of giving a presentation. She suggested that ye might contact St Lukes hospital (Dublin) pharmacy dept as she refers all oncology queries to her colleagues up there. Sorry!
Looking back on my post I feel I sounded like an ungrateful wretch . Sorry bout that caught at wrong moment . I thank you all from the bottom of my heart . The support we get lifts me . Thank you. Must b difficult 2 please everyone . .
Not atall, we are always looking to get speakers that will address the needs of patients. We are also conscious that we have a mixed audience and that not everyone is at the same stage on the journey. Keep the feedback coming!