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

[KatieBMumsnet]

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

Well, I am terrified of getting cancer and I wish there was more information and normal stuff out there talking about how survivable it can be. (Eg somehow, hiv positive status has become less terrifiying since the 80s )
My dad, granddad, granny, aunt have all died young of cancer (except granny who was older). My mum and sister have had skin cancer.
As a teenager (16) what didn't help was;
Being brave via my mum and being sent away on a planned school trip so my dad didn't worry that he was ill. Him dying while I was stuck in paris. What could have been better; having a nurse to talk to and be realistic about things, and being allowed a say in his funeral. I think at that time bereaved or scared children were overlooked a bit.
Someone to ask questions and get honest answers from who isn't related to the person but can answer what if questions would have helped with the other times.
I can only wish sincerely for positive news for the other posters on this thread currently unwell or with an unwell loved one.

I have lost my mum, dad, nan, sister-in-law, father-in-law, cousin and best friend to cancer - all different cancers. Macmillan hasn't been a big part of most of those. Macmillan nurses were great for my sister-in-law (in Yorkshire) and rubbish for my mum and dad (in London). They are fantastic when have the resources to be there I guess so support the campaign to fund them and the support they can give. What helped me and our family cope in all circumstances was having people around not afraid to have the hard conversations about dying and misery but also to find the funny side of the bleakest situations and not pussy foot around those tough times. Laughing and crying often followed hot on each other's heels. And practical, considerate, gentle things. A friend who came to take dad's soiled bedding (we nursed him at home) to the launderette over and over again, one who arrived with a beautiful delicate cake and made us all tea, the nurses who decorated my friend's room at the Royal Marsden to welcome him back when his cancer returned because they'd missed him so much - they 'got' his humour. Tidying my sister-in-law's bedside table and putting fresh flowers in her room while she was out having chemo, breaking mum out of hospital to take her to the cinema. Talk, friends, kindness, people taking on the tedious practical jobs without being asked. And people who remember that once the big news fades from the headlines, it goes on for your family. Knowing that years later - perhaps on your wedding day when both parents have gone - there are people who take extra care to remember with you and include their memory in the most unexpected and celebratory ways.

The thing that really helped was the support of my friends. My husband was diagnosed with lung cancer and given six months to live when my twins were two and a half. He was too weak to make that video for the kids that we planned. We tried to keep the kids from seeing him when the pain was acute and for him to spend time with them when the pain was less. He was determined to survive for the kids but with morphine was in denial. I was also aware that he could not talk about dying as he had lost his own mother when he was three.
The worst times were about three in the morning. I was very glad for two friends who let me know that I could ring them if need be. Just having their support made all the difference as well as the help at the Marie Curie Centre.
I was able to grieve somewhat before he died as afterwards it was impossible with two toddlers. I appreciated the doctor who got us to wake the children and bring them to the hospital to kiss their Dad to say Good-bye though they asked "now that sick daddy had gone would the healthy one come back."
My grief had to be put on hold as I was aware that I had to stay very alive for them otherwise that would be a double loss. Friends again were invaluable creating an extended network for after-school as well as Singles with kids for holidays.
I am still sad as my husband was great with his students and his nephews and niece but my children only have a vague memory of him helping them to learn to ride their bike though I try to keep him alive in their memories.
There is anger underneath at the loss. Separation and loss are hard from them -deep grief in one when the dog died while the other cut off.
Now I am proud of them and hope that when they are older they can love someone without being too afraid of losing them.

Thank you for all of your comments so far. Pamela, Cancer Information Nurse Specialist from Macmillan, has asked for the following to be posted in relation to some of your comments/queries:

" Ashoething: I think I would probably benefit from some form of counselling now but am unsure how to access this?
Dealing with the emotional effects of cancer can be hard. There are a number of ways that you can access counselling. Some hospitals have Macmillan cancer information centres. They would be able to tell you if counselling is available in your hospital or in your local area. Your GP can also place a referral to a counselling service. If you would prefer to do this independently the British Association for Counselling and Psychotherapy, Anxiety UK and Mind are all organisations that could help.
We understand that money worries are the last thing that cancer patients should have to think about. Macmillan offers benefits advice, financial guidance and Macmillan grants. To speak to the Macmillan welfare rights team or a financial guide you can call free on 0808 808 00 00 (Monday to Friday 9am?8pm).

Fimbo 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?
Yes, Macmillan aims to help everyone affected by cancer. If you feel it would help to talk you can call the Macmillan Support Line free on 0808 808 00 00 (Monday to Friday, 9am-8pm). Although we don?t provide a bereavement service we would be able to listen to you if you need to talk and help you find the services that are right for you.

Tallulah 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.
Relationships with others can change after a cancer diagnosis. Family and friends may feel that they need time to adjust to everything that?s happened. They might also worry that talking about your cancer will upset you, so avoid doing so because you?ve been through so much. Talking to family and friends about your feelings can help.
Support groups and the online community can also provide you with the support from people who have been there and done that. You can also call the Macmillan Support Line free on 0808 808 00 00 (Monday to Friday, 9am-8pm) if you have any questions, worries or concerns.

TeaandHobnobs I keep meaning to call Macmillan but I don't know what to say. We are lucky there are such organisations out there.
It can be difficult to make that initial call but you don?t have to have a specific question to ask. Sometimes it?s good just to talk about your situation and what you?ve been worrying about. We can listen if you need to talk, provide you with information, support and help you make sense of everything which will hopefully make it easier for you to cope with.
You can read more about specific cancers, treatments and caring for someone with cancer on our website.

youmaycallmeSSP 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
Macmillan offers support to everyone affected by cancer, including those who are worried about cancer. The Macmillan support line is free to call on 0808 808 00 00 (Monday to Friday, 9am-8pm) for any questions about cancer.

makedoandmend 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.
Family and friends can access support from local support groups and the online community. The Macmillan support line is also available to the family and friends of those affected by cancer. They can call us free on 0808 808 00 00 (Monday to Friday, 9am-8pm).

Rowlers 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.
Bereavement can affect us all in different ways. It can often take a lot of strength to access the support that?s available. The first step is always the hardest but often worth the effort. Cruse bereavement care is a charity that offers bereavement support. They provide information, face to face and telephone support.

We're also here to offer support on the Macmillan Support Line free on 0808 808 00 00 (Monday to Friday, 9am-8pm)

Thanks to you all for taking the time to post your comments. You can find more information about the ways that Macmillan can help everyone affected by cancer on our website.

On the Macmillan support line we have a team of experts who can answer your questions, offer support, or simply listen if you need a chat. Call us free on 0808 808 00 00 (Monday to Friday, 9am-8pm)"

Hi, thought I would leave a msg on this thread as I found a lump in my left breast this week, I went and seen my doctor the next day and have been referred to the breast clinic. I know that I may not have cancer but right now my head is all over the place. We lost my father in law in October to lung cancer and the Macmillan nurses were great they were there for the whole family and I really don't know how we would have coped without them. I am praying that I will not have to see them in the near future but I do feel a bit better knowing that if necessary they are there. X

elliemax I am so very sorry

My MIL died from breast cancer in October. She lived a long way away and was widowed so SIL took most of the day to day responsibility for caring, transport, appointments etc. But they are a family who, like many, would never question a doctor. The result of this was that the terrible lack of coordination, communication and understanding was never challenged and MIL's final months were spent on incorrect doses of drugs, in confusion, without any understanding of whether her symptoms were drug-induced or related to the cancer, and with every HCP she saw telling her something different. Their Macmillan nurse was elusive and unhelpful when they did get hold of her. If ever anyone need advocacy and someone to communicate in plain language it was MIL but there was nobody.

I phoned the Macmillan helpline on their behalf when SIL was unable to get to her work as MIL couldn't be left alone (falling, fits) and had been told MIL wasn't eligible for care, and I got brilliant, clear advice. It was sorted out within the week.

So mixed experiences but I think it would all have been easier if there had been some advocacy or even just communication. Which is what I thought Macmillan was for, but they didn't come up with it for MIL.

I still support their work because it obviously is helpful to many people, but DH and SIL won't.

My advice to anyone affected by cancer is to keep asking questions so you understand enough to be in control.

My Dad was diagnosed with terminal oesophageal cancer in August 2010 and given 6mths. The first round of chemo was successful and the tumour shrank to nothing. This bought Dad time and we had the most wonderful family holiday all together in July 2011.

By August 2011 another tumour was growing in a more awkward position. Miscommunication meant that Dad ended up having more cycles of chemo than he was meant to. The chemo didn't work and left him extremely weak. Combined with it being winter, not being able to eat because of the tumour and being tied to weekly hospital visits, he and my Mum got very down. He finally died in May 2012 just a couple of months (if that long) after his last chemo.

In March/April 2012 both my parents were getting very frustrated by not knowing who to get help from. If they had known that all the time Dad was home that the GP was the first point of contact, Dad would possibly have been a lot more comfortable for much longer. Once Macmillan, GP, district nurses and Hospice at Home kicked in, the care was exemplary and we can only praise the care my Dad received and the support Mum got.

I think the reasons they didn't know how to get help were twofold.
Dad didn't like to "make a fuss" so if asked how he was, he would say ok. Despite being in almost constant pain and not being able to eat.
Secondly, I think they fell into the trap (that occurs everywhere) of assumptions. the hospital staff knew Dad was under the GP. The GP knew Dad was under him. And both assumed Dad knew this. But he didn't. I think this 'assuming' that patients and their families know or understand the system is my one and only criticism of the care Dad received from diagnosis to death.

I live in Cornwall with 4dc. By hellish coincidence, dh's stepfather died 4 days before my Dad (I realise I have outed myself). The school referred the children to a local charity called Penhaligon's Friends. They are a bereavement service for (I think) under 18s. They have been lovely.

My DM was diagnosed with cancer in 1983 which I was still a child. She died in 2010 after 27 years with it wandering around her body, and treated by radiotherapy, endless surgery, hormone therapies, and finally 4 years of chemotherapy.

Whilst my DF was involved in the process and met with the consultant whenever DM did, my DSis and I were in the dark except for any report our DPs chose or could remember to make from the conversations. I suspect that some of the questions DSis and I had were never asked, as our DPs quite reasonably didn't want to know the answers.

The cancer was very unusual and we never got a clear enough description to do any finding out ourselves and as such Macmillan would not have been able to help with fact based information.

However, at no point was there any indication for any of us of what Macmillan or any other agency/charity/service might be able to help with. A child of was 13 left in sole charge of her 10 year old DSis every day throughout six weeks of the school summer holidays whilst DM was taken off for her treatment in a neighbouring city. Two teenagers grew up with announcements of further treatment and surgery being a regular occurrence. Young adults making their way through tertiary education and starting careers away from the family home could only glean what was deemed suitable to be told to them on fixed landlines (often public telephones). This was our norm. I was 40 when she died.

I would hope it's different now but I suspect it's not. Three years on from DM's death and I know my DSis needs some bereavement counselling. Thanks Pamela for the links. I may be able to persuade her to consider contacting someone now.

I felt isolated and abandoned. Not by my DPs who were the best they could be for us, but by the world. As children DM asked us not to share her diagnosis outside the family; I'm guessing she meant until she'd got her own head around it. I learned that if you shared with a friend, they told their mum, and the secret was out. I no longer share stuff that really matters. Nobody else can keep a confidence.

This is where we needed an outlet. Even 10 or 20 years later wouldn't have been too late. As I come up to the 30 year anniversary of the initial diagnosis, even now it wouldn't be too late.

Not for me but for the children of parents with cancer, I ask that every child is asked, regularly, and individually, and directly, what they feel and what they want to know. I didn't feel like I was allowed questions or emotions. I had to keep strong for my DPs. They were the ones going through it. They were the ones everyone was interested in. We weren't even a logistics problem. I could cook and look after DSis. DPs were proud of me but I was alone.

My mother died in Sept 11 of cancer, she was only diagnosed at the end of the August. Sometimes even now, I'm not sure I'm coping with losing her, the weight of missing her still feels catastrophic at times and can take my breath away. This month would have been her 70th Birthday. But she lived a very full life, my toast to her at the 'wake' was "to ***, a life well spent" which was reference to the quote which helped me so much " As a well spent day brings happy sleep, so a life well spent brings happy death." Leonardo DaVinci.

Add message | Report | Message poster 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.

Same here Fimbo but my mum and it was 4 weeks. I didn't know much about it but it seems renal cell carcinoma is rarely diagnosed before late stage.

Did your Dad work with petrochemicals? Just out of interest.

Deepest sympathies to you and yours x

Homebird, "Not for me but for the children of parents with cancer, I ask that every child is asked, regularly, and individually, and directly, what they feel and what they want to know. I didn't feel like I was allowed questions or emotions."

Very valid point. With our children, aged 11,8 & 6 when DH was diagnosed, we chose to be straight with them from day 1. I did fear at times that particularly the older two knew and understood too much, particularly ds2 who is a very deep chap and you don't always know what he's thinking and how much things are upsetting him. They had regular updates, asked anything they wanted to ask, and have had conversations both together and as individuals with age appropriate information. I didn't want their lives to be dominated by dad being ill and his treatment, and over the summer holiday when he was first diagnosed and starting chemo this was a real risk - but they seem to have come out of it ok and don't feel that it has had a massive impact on their way of life. We have made sure that the conversations have continued throughout and not just that we started this way then "forgot".

I really hope that you can work through your feelings wrt the lack of information, and that the rest of us take notice of your good advice.

Well done MrsShrek. I hope your DH has made a good recovery from his treatment and that you all have many happy years ahead of you.

Homebird a very moving story I feel for you. I am sure that is still happening in alot of families.When my dh was diagnosed 5 years ago this month our triplets were jus nine. We had been secretly back and forth to hospitals etc for 2 months, coming home nd trying to be normal so they wouldnt suspect, it was agony. When we told our families they said "are you going to tell the childen"? I remember feeling abit shocked by that as they had to know, we are a family, this is their Dad. Of course we didnt say its not curable etc, we told them in the simplest terms, they all burst into tears, it was awful. School was amazing, they looked after them as did their own friends, they alot of pressure off of me. In our case within three weeks of being told Dad was in hospital to have the bowel tumour removed, they had never known him to be ill or away from home. I asked them if they ike to go to see him and they said yes. I remember vividly walking into the ward, he was in bed and laughing to the nurses, he looked good. Rebecca went straight up to him and hugged him, the boys froze on the spot and started to cry. Since then, many hospitals later the boys have never come with us and thats fine, but Rebecca does and she goes into "nurse mode" and fusses over him. I do often think how it will affect them later on in their life, such a big chunk of their young years affected by this, I get scared for me, losing him, being left with three young children............but then I do try to live for today...I try! xx

I've been 7 years clear of 5 years of clear tests for cervical cancer. I've spent my entire 20's with tests hanging over my head, the constant worry that it wasn't caught early enough, the treatment didn't work or I'd need further treatment. I didn't have anyone to talk to about it and just worked the appointments into my life.

In 2011 my gran died of cancer. It's still raw but I'm using that emotion to raise funds for cancer charities. I cannot thank the medical team enough for their care of her.

I had cervical cancer 7 and a bit years ago. It was a horrid time complicated by the fact that my diagnosis came 2 days after the death of my MIL. Because of that and because my cancer waas successfully treated with surgery I've always felt the need to be positive and underplay the trauma of what I actually went through.

DH understood and my consultant who did the surgery was incredible but I felt a bit of a fraud at the time and never sought any other help. Some emotional support would have been very beneficial but I wasn't offered any and I didn't feel like I had been through enough of a traumatic cancer experience to ask for it When I went to my gp having only been given 6 weeks off work for example, he didn't even ask how I was, just said he'd give me another 2 weeks but I needed to get back to work eventually I came out of the surgery and sobbed my heart out. I spoke to my consultant who was so supportive and he wrote to the surgery, making it clear they needed tomsupportnmemto have as much time off as necessary. I wasnt even able to lift my children for 6 weeks, and I have an extremely demanding job. There was no way I could cope physically, never mind mentally.

I look back and I can see how the emotional scars have taken so long to heal, it's been very hard. I had cancer in my early 30's with very young dc's to care for, it was a hugely traumatic experience and I should have recognised it as such at the time. Because I gave the impression of coping to those around me, the whole thing got brushed under the carpet a bit.

My incredible DH has been with me through all the tough times thought and if I ever hear those fateful words again, I will be putting my needs first and accessing support.

What helped me breast cancer last summer?

• having a sister go through the whole experience a few months previously,
• consequently, knowing what tests to expect, and that they are all routine
• the speed of seeing a consultant after the initial gp's appointment, and that all tests were done immediately,or within a short space of time
• nice consultants and breast cancer nurse, who explained everything and gave you time,
• reading early on that breast cancer is 85% success cure rate
• offers of help with childcare from family and friends

- not actually feeling ill ( part of me still can't comprehend that I've had cancer!)

• tamoxifen thread on mumsnet ( thanks to everyone who's replied to my posts)