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Macmillan would like to know if you/your family/friend have been affected by cancer, what helped you to cope? Please join the conversation and share your experience

(70 Posts)
KatieBMumsnet (MNHQ) Mon 18-Feb-13 15:42:47

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.

So, if you've had cancer or your friend/family member has, who helped you to get through it? What advice/support did you or your friend/family member receive? Was there any advice or support you would have liked that you didn't receive? Was there one piece of advice you'd like to pass onto others in this situation?

Please share your stories on this thread and help other Mumsnetters who are currently affected by cancer.

Also visit the Macmillan pages on Mumsnet where you can find out more on the Not Alone Campaign, how Macmillan can help and ways to donate.

Thanks for taking part,

MNHQ

youmaycallmeSSP Mon 18-Feb-13 17:43:18

When I was being investigated for cancer two years ago the worst bit was waiting for the tests and then the results. I was being investigated for pancreatic cancer, which had then (and probably still has) a 1-year mortality rate of 97%. Everything seemed to take so long and I was incredibly scared. I looked on the Macmillan website for support but didn't find the kind of handholding I was looking for. In fact I felt like a bit of a fraud as it was still unknown whether I had cancer or not - just a large tumour. I would love to know that there's somewhere for people in that situation to find support now.

youmaycallmeSSP Mon 18-Feb-13 17:46:15

The one piece of advice I'd pass on is to be pushy. I sat for weeks waiting for appointment letters and scan dates before calling to find out what was going on, thinking that everything was in hand, when actually the hospital had 1) booked me in to see the wrong consultant and then 2) lost my notes. If my tumour had been cancerous, my patience could have cost me my life.

Ashoething Tue 19-Feb-13 10:32:55

I was diagnosed with a cancer called choriocarcinoma in late 1999 following a molar pregnancy. I was 23 and at university.

I had to be flown to charing cross hospital in london from scotland but I was lucky in that they allowed my mum to come with me. I started high dose chemotherapy that day.

I had 6 months of chemotherapy and suffered a few complications-severe sickness,dehydration,conjuntivitis,mouth ulcers and had to be admitted a few times for blood transfusions.

At the time I was offered counselling but being so young and pretty immature!-I didnt think I needed it. It actually effected my family harder than myself-my mum in particular found it very hard to watch me being so ill.

Now I am older I am finding that I am starting to process my experience more especially now I have children of my own. I think I would probably benefit from some form of counselling now but am unsure how to access this? So I think that perhaps counselling should be offered to those who have completed their treatment.

I found that in the main the treatment I got was very good although as I was being treated between two hospitals there was some times some miscommunication.

I greatly appreciated the donation I recieved from Macmillan and I used to it to throw a party for family and friends as a thank you for their support. I found dealing with the benefit system very hard as they didnt seem to understand the nature of my illness and how poorly it made me so more information on how to access what you are entitled too would be very useful.

I wish all the best to anyone else who is living with or fighting cancer.

MTBMummy Tue 19-Feb-13 11:02:20

My mum was diagnosed with cancer 20 months ago, I wish she'd been more pushy at the start, they fobbed her off with Imodium for 3 months before they eventually investigated and discovered she had bowel cancer.
It then took 4 months before they started chemo, because they'd asked her to sign up for a trial of a new treatment, no one said that the trial would delay her treatment so much.
Only after they removed the main cancer was it then discovered that it had spread to her liver, and it was too infected for her to have a transplant.

If we'd all been more forceful in the beginning they may have caught it with enough time, and we wouldn't have lost her.

My second bit of advice goes to those who are unfortunate enough to have lost someone to cancer, we lost my Mom, almost 3 months ago, and at the time I didn't take up the option of counseling, do it - even if you think you don't need it, you will probably find you do later, and it takes ages to get it set up.

And finally, if you are unlucky enough to have cancer, make sure all your affairs are in order, my mum had everything organised, even down to the music at her funeral, it made dealing with an incredibly hard time much easier, the only thing we had to think about ourselves was which outfit she would be cremated in.

trice Tue 19-Feb-13 16:09:24

I was incredibly angry when I was diagnosed with breast cancer. Angry with my body, and the nhs, macmillan and the world in general. It is a grieving process - even if you get a good outcome. You don't have to be rational about it. When people tell me I am incredibly brave I want to bite them. I know they are trying to be kind and supportive but it sounds so patronising.

What helped me cope mainly was pretending very hard that it was not happening. It really sucks being ill.

Fimbo Tue 19-Feb-13 17:10:52

My dad died from renal cell carcinoma last April. He was perfectly health prior and went from diagnosis to death in 6 weeks. It may have helped my mum and I, if we had been given any information about MacMillan. We received none at all. I guess in 6 weeks not much could have been done but it would have been nice to know we could have phoned and spoken to someone at the end of a line. I still have waves of peaks and troughs about my dad's death, do MacMillan help people like me?

tallulah Tue 19-Feb-13 18:43:10

I don't know whether others have experienced this, but when I heard that a friend had breast cancer I was really shocked and upset and felt I needed to do something. Only 2 months later I was dx with bowel cancer. It didn't really feel like such a big deal when it was me, and I wanted people to stop fussing.

I had to tell my mum because she knew about all the investigations and unfortunately was the default babysitter. I really wish I'd kept it quiet because she took it upon herself to tell everyone she came into contact with. I got really angry when every conversation started "I was telling Jean/ Fred/ John/ Uncle Bert...". The ILS, who I normally can't stand, kept it to themselves and told no-one at all.

The hardest bit is that at the start family and friends are all falling over themselves to "help" when there is nothing they can do. Once the treatment phase is over it's like they all think "oh that's sorted now" and just move on. Like having a broken leg and now it's fixed. I feel in a bit of limbo now. Too well to call on any charities/ organisations but with the knowledge that it could come back; and of course you go from appointments several times a week to 6 monthly, which is scary.

My medical care was pretty good but I wish they'd told me at the start that you are considered disabled for one year. Also they told me to use disabled toilets but not where/ how I could get a Radar key. We have a really good cancer care centre locally but as it wasn't offered/ mentioned I assumed it was something you had to pay for. Found out too late it's all free.

I was lucky enough to get a place on a Survivors course, which was 6 weekly sessions in a group of 10 people who had all had the same cancer and were at roughly the same level of post op recovery. It was run by a psychologist and the 2 specialist cancer nurses and it was so helpful. Even just to be able to ask people "did this happen to you?" or "are you managing to eat fruit?" Pretty much like MN but face to face, and more directed, with specialists on hand. There is no substitute for people who have been there and done that.

Sorry for the essay but one more thing. It took 7 months of monthly GP visits before I got a referral and even then they only referred me to shut me up. I knew it was cancer. They were convinced it was IBS. sad

Rowlers Tue 19-Feb-13 19:10:02

My mum was diagnosed with cancer 3 years ago and died in August 2010.
She spent her last days in her local hospice, who were fantastic, but when you go home, there's nothing. It's all down to you to be proactive, at a time when you literally have no strength. I have never talked to anyone about what happened to my mum, have not the umph in me to go to my gp and ask for a referral for counselling etc. I think resources are stretched enough and don't want to push myself forward.
So I keep it all in, never even been able to talk to anyone in my family. It was all so horrific losing mum, my own agony at losing her seems selfish.

AandAmom Tue 19-Feb-13 19:55:46

My sister died of breast cancer aged 40, my cousin died of the same dreadful disease just eighteen months later at 46 now my other cousin has started chemo for this same awful disease aged 45 years. For 12 years our family has lived in mourning and now we are in living in hope for my lovely cousin. I have a daughter and four nieces ....please please please keep supporting research into this dreadful disease so that a cure is found as soon as possible x x

ledkr Tue 19-Feb-13 20:00:26

I had breast cancer when I was 26 which was 20 yrs ago.
I saw gp but was still awaiting a consultant appointment 3 weeks later.
I rang secretary who explained I'd be low priority cos of my age.
I had three boys under 7 hmm
I went private and saw consultant the next day who aspirated the lump and told me he'd not seen anyone as young as me for twenty years.
The next evening he rang to tell me I had a stage five tumour.
I sat up all night with dh and my brother watching funny videos to keep us going. Saw consultant (back to NHs) the next day who scheduled me for the op according to my cycle which was at the time thought to be the best.
I had the lump removed about a week later and my lymph nodes were clear. However the cancer was aggressive so a plan of attack was scheduled ie radio therapy then chemo.
I saw the oncologist who took no notice of my age and pooh poohed questions about my fertility and effects of early menopause and just wanted to whip out my ovaries.
I contacted breast cancer care who recommended I see a consultant at st George's who specialised in younger women.
It was there that I decided to opt for a double mastectomy and reconstruction. I couldn't get over the fact it could come back at any time and just wanted them off.
I had to see a psychologist who passed me as sane and rational and I had the op about a year after my initial treatment was over.
I was in London for over a week with the op and dh had to stay at home to care for the boys.
My best friend came with me and the wonderful Macmillan paid for her to stay in B and B so I had her support.
I recovered quickly and was able to move on thanks to the mastectomy.
I always thought I'd have liked another baby but was told it might be difficult but 9 yrs later I became pregnant by surprise.
I daren't hope for a daughter but dd was born with her brothers all present and we were delighted.
Unfortunately soon after dh and I broke up. We had been through a lot but he was fabulous support it just fizzled out.
When I met dh a few years later, I told him children were out of the question with chemo and my age. He accepted this and we got married.
Then quite by surprise after 3 yrs dd 2 came along. A red head with attitude. We all adore her.
I do still worry. Especially if I'm ill.
It's a terrible thing to go through but I do think it teaches you how lucky you are to have good health.
I'm in the process of being screened for gene mutations so that my girls can be informed as they grow up.
It's amazing to read other people's stories on here though.

WoollyEyedandWittering Tue 19-Feb-13 20:41:06

Rowlers - could you ring the hospice and ask for help. A hospice nurse I was talking to said they offered counselling for friends and family afterwards whenever they needed it. I am sorry for your loss sad

fod27 Tue 19-Feb-13 21:25:24

I am currently awaiting to see a specialist for rectal bleeding, my father died of bowel cancer and I watched him deteriorate into a small weak old man, I don't know if I have anything like that however I have also just discovered that I have had a missed miscarriage, I'm not sure if the two are linked but my GP informed me that it's unlikely.

I'm feeling a little cheated and very scared the thought of loosing our baby and the possibility of cancer seems all too much ATM

What helped a lot when I was looking after a relative with terminal cancer was to get the care team to agree to just one person handling the medication and pain relief. At one stage both the mc millian nurse and the gp would visit on the same day. Not helpful.

When a relative needs a higher dose of morphine you don't need some one saying they will have to agree it with someone else. You just want the ok to give more morphine.

And in the final weeks it was much easier for the district nurse ran the home care and meds. The district nurses were amazing. Got us all though the worse weeks with really empathy and calm.

Forgot.

Those wheat bags you can buy that go in the microwave are really good for small aches and pains.

Also if you need help ask. The worse anyone can say is no.

fury Tue 19-Feb-13 21:53:47

i was diagnosed with colon cancer 2 years ago after many years of worry and pain and being told i had fissures,piles etc.I WOULD URGE EVERYONE WHO'S OFFERED IT TO DO THE POO TEST IF THEY ARE OVER 50 LIKE ME,AS THIS ALERTED THEM TO CANCER POSSIBILITY AND PROBABLY SAVED MY LIFE.I had an op to remove tumour successfully.Very briefly,what helped me was:
Maggie's centre for support from staff&other cancer patients,and art classes and benefit info and someone to be there if i needed them when i phoned for results.Mcmillan for friendly info and support and 4 fantastic free aromatherapy sessions,My mum friends who rallied round to buy a microwave and make dinners for me and my child(i am a single parent with no active family support) and some of whom stayed the night when i came home and held my hand through terrible nights of pain and fear and suffering and helped my young teenager ,who was the person who most devotedly supported me all the way through and continues to through my ongoing health problems and fears.I also used a lot of cds and books in the buddhist,spiritual type style though i am an agnostic.I imagined getting better,imagined healing and savoured every minute of nature i could get,every glimpse of sky and sea.people in general were much much kinder and more helpful than when i was in much more pain through other problems.However,what didn't help was the benefits system which continually assesses you and you have to defend yourself when you just want to rest and you're struggling in limbo land between life and death.Also many people i met were struggling to afford to get to hospital and couldn't afford help to look after them if they lived alone.I didn't know that mcmillan can come and stay over and it was shut for xmas when i was in hospital.It would have also helped if volunteers from mcmillan visited patients in wards as you feel so vulnerable and you need folk to speak up for you-ie make sure your fluid bags,catheters etc are changed properly and that your help buzzers etc are working-mine wasn't despite continual requests.The nurses were very overworked though and frequently exhausted.What would also help is if after you've successfully got rid of the cancer is for the changes you struggle to make to prevent it coming back ie healthy eating,stress managment etc got more support as once you are cured support seems to disappear and understandably resources are stretched already.but this goes for friendships and relationships too.You see things differently when life can be cut short and you aren't prepared to waste time on petty squabbles or being treated badly at work and i have also found i struggle with long term motivations or goals and have a desperate need not to waste a day.I would also mention that online help sites are a great boon although i myself am not twitter literate!

fury Tue 19-Feb-13 21:56:33

i would also like to mention that our dog has been a wonderful healing force!

lisalisa Tue 19-Feb-13 21:57:35

Yes I wanted upfront proper information on what was happening to dad and why. His situation was a bit complex and I felt we were drip fed bits of info ( during his last month in hospital) by doctors who viewed us all as dimwits ( which we are not - quite a few cambridge degrees between us and personally I had researched the illness so much over the last few years I did know a fair bit about it)

lisalisa Tue 19-Feb-13 22:01:02

Rowlers I hear you. I feel the same about losing dad sad

redrubyshoes Tue 19-Feb-13 22:10:47

I lost my father to bladder cancer two years ago. I cannot thank the MacMillan nurses enough, they were kind, helpful, gentle with my Dad and nothing was too much trouble. Two of them used to pop in on their days off to see him and three of them attended his funeral.

I sat with my Dad on his last night and two of them stayed on the ward with me and fed me tea hourly and held me when I fell apart as he slowly died.

I can never, ever repay their kindness and compassion.

fury Tue 19-Feb-13 22:14:24

I also would like to add that there wasn't any support for my child who was 12 at the time of diagnosis.i found out later for another friend there are holidays etc specially for children of cancer sufferers but he could have done with extra support.I had mistakenly been told M aggie's gave counselling and support to children.However maggie's centres and online site and groups do support and advise friends and relatives as well as sufferers.
another point is it would help if people realized that bowel cancers can be really embarrassing to talk about sand discuss,as are symptoms.I would have liked to see more friends and attended more relaxation classes but didn't as i was so worried about having to go to the loo so much or having potential mini accidents.I would like to recommend the new book by Bernardine Bishop,
Unexpected Lessons in Love,John Murray publishers,in which two women with bowel cancer befriend each other.

fury Tue 19-Feb-13 22:21:44

gosh i keep on thinking of more factors which helped-my surgeon was a really nice kind down to earth friendly man and the urology nurses and recovery team were wonderful.However the wards and also meals had far too many people on double shifts or extra hours and there was a lack of supervision and care cespecially at night.

My mum died from cancer when I was 23 (I'm 45 now) and there was very little support then for her or the family. It was really like the dark ages with nurses getting cross because mum insisted on having her prosthetic or wooden leg as we called it, the same size as her remaining breast. This seemed to be considered an outrageously ungrateful request!
Thankfully things seem to have changed not only in better medical treatment but also in the emotional treatment of people who have the condition. I got some help from Cruse after her death but now I think I would come here or another chatroom instead rather than wait for a weekly session. It's very hard to hold grief and pain in until your allotted hour.

When my friend's dad had cancer a few year's ago, while the dad was given support, the grown up kids felt there was a gap with help for them and that they could really have done with someone to talk to. Cruse helps those who are bereaved, but there was little for the family of the living and they didn't want to bother the medical staff. In the end they turned to the web and found help there but I think it was hit and miss.

My best friend had cancer two year's ago and while she felt supported by family, nurses and friends while going through it - I think she's a bit at a loss now. She's not the person she was at the start but the family want 'mum/wife' back and things back as they were. It's almost as if she has another struggle starting now and I know she doesn't quite know where to turn. She's not really a web person and I'm not sure there's a lot of aftercare for someone in her position.

So I think things have changed, but if you're not used to using the web for emotional support there can still be a void.

MrsDeVere Tue 19-Feb-13 23:21:15

My DD was sick for two years before she died.
We spent most of that time in hospitals.
I saw more of the medics than I did of my family.
But when she died..nothing.
It was like we never existed.
Not only had I lost my beautiful daughter, I was left floating around in this weird limbo. Like a soldier who has spent two years at war, fighting with his comrades who is suddenly demobbed into civilian life, with no contact from anyone who shared the experience.

Sorry that is rather heavy on metaphor. But I don't know how else to explain it.
I was just cut adrift and expected to get on with it.
After two years of horror, ending in the death of my child.

Its no wonder so many parents end up with PTSD.

My dad has just been diagnosed with prostate cancer which has metastasised to his spine (three tumours). He's had one dose of hormone therapy and one course of radiotherapy on one of the spine tumours so far.
I hate not knowing what is going on, I have no idea what the prognosis is for him, or if the doctors even have any idea what it might be.
I am an only child and I am struggling not to crumble under the pressure of being there for my dad but also supporting my mum as she struggles to cope with his diagnosis. I'm driving back and forth to see them every other day with 10mo DS in tow, and feel guilty that he is spending so much time in the car at the moment.
I keep meaning to call Macmillan but I don't know what to say. We are lucky there are such organisations out there.

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