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NOW CLOSED Macmillan Cancer Support Q&A

(36 Posts)
KatieBMumsnet (MNHQ) Tue 22-Jan-13 15:10:39

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.

Thanks,

MNHQ

ItsAllGoingToBeFine Tue 22-Jan-13 17:03:06

I gave nothing to contribute, but that is a great idea!

lisad123everybodydancenow Tue 22-Jan-13 17:08:53

Message withdrawn at poster's request.

IamtheZombie Tue 22-Jan-13 17:12:04

Zombie is willing to help. She'll even talk proper foir it. grin

I am currently undergoing treatment for breast cancer. I've had the mastectomy, the chemotherapy, the radiotherapy and currently just over half way through my course of Herceptin.

Ilovemyteddy Tue 22-Jan-13 17:23:12

DH had bowel cancer almost four years ago and is doing well. Not sure I could contribute much to the Q&A but wanted to say that he found the forums on the Macmillan site an invaluable help when he was diagnosed and going through treatment.

Gigondas Tue 22-Jan-13 17:44:27

Have tried to respond I think but happy to help and will post in tamoxifen thread for cancer people.

Am happy to help but I like the way zombie talks .

DomesticCEO Tue 22-Jan-13 18:03:31

<waves to Gig>

Gig pointed me this way - happy to help as a friend who's supported a couple of friends through cancer, although haven't had it myself.

timidviper Tue 22-Jan-13 18:07:17

My darling Dad died of cancer at 72. Once he was diagnosed his care was very good but we had about 4 months of him having increasing bowel problems, being in excruciating pain, inadequately medicated and treated with a lack of care and consideration almost as though he was just being a wimp despite him having a sense of something being very wrong and having told his GP and consultant that.

On one occasion DM took him to hospital as he had fallen and was almost senseless from pain, he was examined, told there was no sign of anything wrong and delivered back home at 2am by 2 paramedics who had to hold him under his arms to walk him in as he was too weak to walk alone. He was put in an armchair at home and left, incapable of moving from it.

Eventually it became clear his "weakness" was building paralysis and only then was he given some specialised scan which showed a tumour in the spinal cord.

I am now very aware that some cancer patients suffer far too much before they are able to get a diagnosis and all the Gold Standard Framework stuff kicks in. I don't think I will be able to help much as Dad only survived about 4-6 weeks from diagnosis and that was all spent in hospital but it is a shame that people can suffer so much through delayed diagnoses which are no fault of their own.

IamtheZombie Tue 22-Jan-13 18:32:14

timidviper, my godson's symptoms were also dismissed for far too long. He was eventually correctly diagnosed but it was too late. We lost him in September.

MrsBungleBear Tue 22-Jan-13 19:21:11

I have filled in the form - am happy to contribute.

Story similar to Timid here. My mum died aged 52 from cancer. She had been ill and complaining to GP for almost a year before she was diagnosed - too late. She died 12 weeks after diagnosis. Her cancer was only diagnosed when she was admitted to hospital after she told the GP she was in immense pain. She was admitted with suspected appendicitis.

After diagnosis, though, the care we received was very good and she was able to die at home with support from palliative care team, district nurse and Marie Curie.

Completed.

Welovecouscous Tue 22-Jan-13 20:52:25

What a lovely idea for a thread.

My mil was diagnosed with breast cancer and as she is a very private person we couldn't ask her how best to support her.

I had great advice both from Macmillan and one of the MN threads.

NedSchneebly Tue 22-Jan-13 21:19:04

I've had breast cancer, and have filled in form. Happy to help if I can. Great idea, this smile

NotAllItsCrackedUpToBe Tue 22-Jan-13 22:43:56

I have no personal experience of cancer so far but my Mum was a Macmillan nurse before retirement and I learnt from her that support is always available out there but unfortunately not always well publicised, so people are often not aware of the support they can get.

I think this is a great way of raising awareness of all types of support that can help people going through a very difficult time. I am pleased to see that whilst MacMillan do a great job and will undoubtedly raise their own profile through this, they are doing something to promote other forms of support for cancer patients and their loved ones that can be equally as important.

lisad123everybodydancenow Tue 22-Jan-13 23:07:13

Message withdrawn at poster's request.

PootlePosyPerkin Wed 23-Jan-13 00:03:02

I have lost both of my parents to cancer - two very different illnesses and two very different deaths. If I can help others at all then that has to be a good thing.

MrsShrek3 Wed 23-Jan-13 02:12:13

Lisa has given me some awesome advice, she's amazing smile
Also wondered how it will go as there are so many forms of cancer and so many treatments and trials, with individual variations too. I really hope this Q&A works because it will complement the other support threads that are currently running. posting links on there to this thread might also be a plan, carefully obv...

I'm sick of hearing all these stories of late diagnosis. Dd's dad repeatedly went to his GP with lumps on his head before he was sent to a specialist. Within 6 months he was dead at 46 having suffered pain no-one should have to go through in this day and age. The McMillan people and hospice staff were amazing btw, I just hope someone had a word with the doctor. Whatever happened to early intervention?

Mockingcurl Wed 23-Jan-13 08:57:31

I was diagnosed with breast cancer seven years ago. I had surgery, chemotherapy and radiotherapy. The chemotherapy was by far the most traumatic part. I would not have got through it without the help and support if the McMillan nurses. They were the ones who gave me the chemo and phoned me at home every day for a week following each session.
They provided a lifeline for my entire family during a very difficult time. I am happy to help.

annekins Wed 23-Jan-13 10:57:10

I can't add the Q&A but just wanted to add my huge support for Macmillan, they provided travel insurance for a very dear friend so she could take a trip to Australia to see family and friends after she was diagnosed with terminal breast cancer. Super charity, its a shame we have to rely on charities so much to support people with cancer though!

KatieBMumsnet (MNHQ) Wed 23-Jan-13 14:46:54

Thanks to everyone who has signed up so far and for all your comments - they're really appreciated. Just to reiterate the MN 'experts' will be providing advice on support, there will also be a Macmillan expert on hand to deal with any more technical questions that might come up. Please do direct anyone to this thread who you think would be interested. thanks

yes- I'd be delighted to participate !

sajaruss Thu 24-Jan-13 21:05:31

I'd be happy to be part of this too. I was diagnosed with a brain tumour in 2004, (don't laugh at this next bit) I didn't realise it was cancer, thought it was more akin to something like a brain heamorrage (sp?). At the same time, my dear mum was in the last stages of her life. She'd been to her GP so many times complaining of severe back pain, he dismissed it as suspected kidney stones. When she finally got a scan it revealed advanced pancreatic cancer, too late to give any treatment. I went to her funeral a week after having my first lot of brain surgery. It was a tough time and I still miss her immensely.
Cannot praise Macmillan enough. I have been looked after by two fantastic Macmillan specialist nurses who have provided support, advice as well as friendship and humour.

BlueyDragon Thu 24-Jan-13 22:29:17

Count me in - I'm having chemo for bowel cancer at the moment. Bowel cancer diagnoses are compromised by the embarrassment factor and by the fact that it's not a high profile cancer, but just as prolific. I don't embarrass easily so happy to share my story if it helps others avoid what me and my family and friends have been through.

KurriKurri Thu 24-Jan-13 23:35:57

Survey completed smile MacMillan is a great organization.

MommyB3 Fri 25-Jan-13 09:13:35

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.

MommyB3

Terz Fri 25-Jan-13 19:05:47

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?

Sabriel Sat 26-Jan-13 11:00:43

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" shock 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.

Theas18 Sun 27-Jan-13 08:55:39

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.

Cortana Sun 27-Jan-13 14:31:10

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.

lisad123everybodydancenow Sun 27-Jan-13 21:46:36

Message withdrawn at poster's request.

Cortana Sun 27-Jan-13 23:36:09

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.

Verityslife Mon 28-Jan-13 12:40:42

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)
Www.verityslifestyle.com

KatieBMumsnet (MNHQ) Mon 28-Jan-13 17:07:30

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?"

KatieBMumsnet (MNHQ) Fri 01-Feb-13 16:41:43

Thank you to everyone who signed up to take part in this Q&A, Macmillan have asked for the following message to be posted:

“We’ve been overwhelmed by the number of Mumsnetters who replied to our request. Unfortunately we can’t ask you all to be our Q&A experts but we’d love it if you got involved in our discussions on Mumsnet or even posted your own questions for our Q&A. We’d always love to hear from you at Macmillan too: www.macmillan.org.uk/HowWeCanHelp/HowWeCanHelp.aspx"

KatieBMumsnet (MNHQ) Wed 13-Feb-13 11:37:32

The Q&A thread is now live here, please do post any questions you may have for the MNer 'experts' or the Macmillan nurse. thanks

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