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NOW CLOSED Macmillan Cancer Support Q&A(36 Posts)
Macmillan know that it can help those who have cancer (or have a family member/friend who has cancer) to talk to others who have experience of cancer to share advice/tips and receive support. And we certainly know, from the many amazing cancer-support threads on Mumsnet, how valuable this kind of peer support can be.
With that in mind, Macmillian are looking to organise a Q&A session on Mumsnet, where the 'experts' are MNers who have experience of cancer. The Q&A will be posted on Mumsnet as usual and, as usual, anyone MNer will be able to post a question.
What we're looking for, in advance of that, are MNers to share their experiences and advice (i.e. act as the MN "experts"). Maybe you already support others on one of MN's cancer-support threads, maybe you've leant on the support provided on those threads and would now like to offer back some hard-won wisdom of your own - or maybe you just feel you have something valuable to share with others who are at the beginning of a journey you're still on, or have been on.
If you're selected to take part, you'll be sent some questions to answer w/c 18th Feb, please only sign up if you're available to answer the questions that week. Your answers will then be posted on MN, linked to from Macmillan's pages on Mumsnet and possibly elsewhere.
If you or a family member/friend has cancer/has experienced cancer and you'd like to provide advice and support to other Mumsnetters in this position please sign up here
We realise this is a sensitive topic and we certainly don't wish to upset anyone. Please only sign up if you are keen to or feel able to share your experience. Don't worry, you don?t have to be an expert on cancer, someone from Macmillan will be there to answer questions too. The goal is to gather the advice and wisdom of Mumsnetters who have experience of cancer and share it with others who might be going through something similar.
I work in medical imaging - an area called Nuclear Medicine. Although I don't work exclusively with cancer services it is a large proportion of our workload.
If anyone has an investigation in this area and wants to know more about it I will happily try and answer questions or concerns.
I lost my DH when he was 36 to a brain tumour and he had lived with cancer for 5 years by then. Before that it had taken several years before they worked out it was cancer. I wouldn't have been able to give him the support he needed without the support I got as his carer so more than happy to offer up whatever support I can now.
Do you mind that I'm not a Mum, just an Auntie?
I had bowel cancer 2 years ago. Like others I had been back and back to the GP for 7 months before being diagnosed, although in their defence I moved house and surgery in that time which added a delay. Had we not moved I think the first GP would have found it on the 4th visit.
Even on my referral the GP had noted something along the lines of "Patient thinks it's cancer - we don't" The only thing I am annoyed about is that by the time it was dx it had spread into the lymph nodes.
I agree with BlueyDragon that the element of embarrassment associated with bowel cancer adds another dimension.
Gosh how much do I need this thread at the moment :-(
Dad had a huge tonsillar lymphoma. It may be a primary and add he's 89 the only curative option is radical radiotherapy if his whole body scan is clear. How arduous is that really?
Palliative radiotherapy is an option, and off course if there is any spread it's the only option. But that presumably means dying if starvation or suffocation- the latter terrifies me.
To be honest my experience of Macmillan was not positive, with my Father or my Grandmother, I understand I am in the minority with this and have filled in the form. If anyone can get any support or advice from our story it would be worth it.
My Grandmother was diagnosed after an accident when a scan showed the tumor. She was treated like an idiot who couldn't possibly understand her diagnosis or the treatment options.
My Father was diagnosed with Lung Cancer, given the all clear, then ignored for 12 months when his symptoms returned. Once we finally for the confirmation it was back it was too late. Macmillan came round to the house with benefit forms, my parents didn't qualify though. Eventually we got help from Marie Curie, they helped us organise a special bed and night time nursing care for my Father so he could stay at home rather than in hospital which he found distressing.
Message withdrawn at poster's request.
Sorry I didn't list the problems with Macmillan, like I said I am aware we are in the minority in our experiences. I just wanted to be part of the Q&A if it could help someone else regardless of our experience with Macmillan IYSWIM.
I've filled in the form, I'd love to help
I have had stage IV breast cancer for 2 1/2 years now and I know I have plenty of help and inspiration to give to people, especially people with young children (my daughter is now 3 1/2)
Thanks all for your comments and for signing up to take part.
Cortana, Macmillian have seen your comment and asked us to post the following:
"We're sorry to hear about the poor experience you've had of Macmillan, with both your father and grandmother. That sounds very distressing for your family and not at all the standard of support we aim to provide. We'd really like to hear more about your experiences, so we can investigate further. Please could you use this link to contact us and help us look into it?"
Thank you to everyone who signed up to take part in this Q&A, Macmillan have asked for the following message to be posted:
Weve been overwhelmed by the number of Mumsnetters who replied to our request. Unfortunately we cant ask you all to be our Q&A experts but wed love it if you got involved in our discussions on Mumsnet or even posted your own questions for our Q&A. Wed always love to hear from you at Macmillan too: www.macmillan.org.uk/HowWeCanHelp/HowWeCanHelp.aspx"
The Q&A thread is now live here, please do post any questions you may have for the MNer 'experts' or the Macmillan nurse.
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