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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.

fathergoose Wed 20-Feb-13 00:39:33

I had cancer about 18m ago. A very rare form of ovarian cancer (I was 28).

It took three trips to the GP to get a scan. The sonographer at the scan then called in her colleague and they whispered behind a curtain for five minutes. They then refused to tell me anything at all, other than I'd get a letter calling me in for an appointment to discuss it. This was cruel in the extreme.

I went private after that and was eventually diagnosed (first thoughts were that it was a dermoid cyst), had surgery and 6wks of horrific chemo (the type they give for testicular cancer - the type Lance Armstrong had if you've read his book - lost my hair, lost over a stone in weight, and felt so ill I thought I was dying. Totally impossible to explain how horrendous I felt).

When I was diagnosed DD was 9m old, and I still feel that I missed out on 6m of her life.

Fortunately, the type of cancer I had is almost always curable and fertility is often unaffected by treatment: I'm currently 39wks pregnant with #2 so life is good once more, and my cancer is increasingly becoming simply a 'blip' in my life story. I personally got through it due to my faith (I'm a Christian): I don't know how I'd have coped otherwise.

Anyway, my thoughts on the questions are that:

- I regret telling so many people (or rather I'm still working on forgiving my husband for telling everyone). I understand why he did it, but (perhaps particularly because of the type of cancer it was) I hated everyone knowing (his boss knows I only have one ovary for heaven's sake, and when we announced this pregnancy, I knew everyone was wondering whether it was 'natural' or IVF...). It's taken (taking) a lot for me to relax around people and not assume that they look at me like the 'sick/broken' person, particularly when people catch sight of my scars (huge one on my abdomen and a very ugly one near my shoulderblade where my port was);

- It was really hard having people offer me 'advice'. My MIL was the worst: apparently my being sick was really hard for her but she was getting lots of support from her friends so I wasn't to worry confused. She also kept coming back to me with 'cures' recommended by her friends, all of which were totally irrelevant since they were related to 'normal' ovarian cancer, not my type. I often felt like I was supporting her, rather than the other way around. So please, tell the patient how much you love/care for them, but don't unload your fears onto them;

- It was also really hard seeing other people's lives continue whilst mine was put on hold. For example, a lot of the mums who'd had babies the same time as me were moving onto getting pregnant with #2 at the time I was having chemo. We hadn't necessarily planned on having a second at that time, but it was still gut-wrenchingly painful to hear their happy news. However one of the many things I learnt from being sick is that there is a 'time' for everything, and, for me, this meant a time to be sick and a time to be healthy;

- Unfortunately I didn't find Macmillan at all helpful. I called them but they a) had no information on my type of cancer at all (which I sort of understand, since it's rare, but still), and b) had very limited information on fertility post-cancer. Luckily, I am very practised at researching matters on the internet, so I found a lot of medical reports and basically educated myself about all this, but it would have been nice to have had some sort of information easily available. I think this is particularly important in light of the larger number of people surviving cancer whilst still in their 'fertile' years;

- Prior to my hair falling out, I was recommended by someone to get it cut short in preparation by a hairdresser who was 'trained' in cutting the hair of people about to undergo chemo (think it's organised by Toni & Guy???). It turned out to be one of the most upsetting parts of the whole experience. She took me to a different part of the salon away from the 'normal' people, put on her 'sympathetic, mustn't upset the potentially dying lady' voice and gave me the haircut of a middle aged lady;

I think a large part of the problem is that the moment the 'C' word is mentioned people automatically assume that you're 5.5ft under, and that simply is not the case anymore. I maintain that if my cancer had been called something else, the whole process would have been a lot easier to get through (and people's reactions would have been an awful lot better). People need to be educated into how cancer is often 'just' an illness, not a death sentence.

Also, more money needs to be put into prevention, rather than cure. Arguably our lifestyles lead to a large number of cancers: if people were slimmer, and drank less, for example, the thought is (as I understand it) there would be fewer cases of breast cancer. And, picking up another thread, if more people BF, there would be significantly lower levels of many cancers (although I hardly prove this - both I and DD were EBF, and I developed cancer whilst BF!). I know that these are controversial topics, but they need to be addressed.

Think that's it smile

triplets Wed 20-Feb-13 09:10:55

My husband was diagnosed in 2008 with bowel cancer , it had already spread to his liver, stage 4. Our triplets were 9 at the time. The hospital where we received the diagnosis is 30 miles away, where the Mac nurses are. After being told by the consultant the Mac nurse took us into a little room and just twisted her hands and asked us how we felt we would cope!! We were too shell shocked to even speak. In our vast experience over the last 5 years we have built up a good relationship with the onc/surgeons/mac nurses.................but! The Mac nurses never contact us, we have so many many times rang them over concerns or needing results, 9/10 times its an answer phone and it takes days for a return call. Also after the bowel tumour was removed he woke up with an ileostomy bag! We saw the specialist nurse for that three times, after that you had to get on with it, that takes some getting used to I can tell you. All this in our lives happened 14 years after the sudden death of our 14yr old son, Matthew. Friends and family were briliant the first year fter he died, friends and family were brilliant the first year afer my dhs diagnosis. Then you are left to get on with it, everyone says how strong I am, believe you me I don`t feel it inside. Life is hard.

triplets Wed 20-Feb-13 09:12:51

Fod27 sending you love and pray that all will be ok. xx

Spero Wed 20-Feb-13 09:51:12

I was diagnosed with breast cancer in October and currently on chemotherapy.

What helped me was
- critical illness insurance cover. I am self employed and without this would have either lost my house or stripped my elderly parents of every last bit of their savings. The financial implications of cancer are every bit as scarey as the illness itself and it seems there is no joined up thinking about this. I was told I could apply for a charity grant of £300. My mortgage is £1'300 pm. Is it not possible for hospitals to produce some template letter that you could send to mortgage companies etc?
- asking people for advice. I am glad I got my shoulder length hair cut short before chemo, made it easier to deal with it falling out. I planned ahead and got some yoga caps in advance as I didn't feel able to discuss wigs straight off
- accept that some people you thought loved you will disappear and never contact you again. But also that people you didn't think cared will show you that they do.

fod27 Wed 20-Feb-13 11:51:25

Triplets, thank you Im crossing everything, I'm so sorry to hear of your experiences what an awful time you've had! I can't even begin to imagine what you and everyone else on here has been through.... Life's so so unfair

popsgran Wed 20-Feb-13 12:34:25

McMillan are great.i used their website for information which I shared with the family.I believe that knowlege pushes fear away.As I have allways been the strong one in the family its a shock to see that no-one else will step into your shoes .so i used MM info and contacted their nurse a couple of times.I have survived lung cancer 8 yrs and uterine cancer 1yr.My DH survived bladder cancer 3yrs.Family were kind but I felt I was keeping them on an even keel.I agree about putting your affairs in order.We had boxes of old photos which we sorted and gave each child a box of decent photos.At least when we die everything is well organised.I encouraged family to view the website if they had other questions.I once phoned MM for advice and they were kind and helpful.Dont forget a donation when you can

Cancer is a bugger! 18 months ago I was a happy go lucky person with very few cares. I had a job (foster carer) I loved and all was well in my world.

Now I am a nervous, tearful hypocondriac person who is scared of every ache and pain.

Cancer took my breast and brought forth all manner of other illnesses, thyroid problems, osteoporosis, arthritis to name a selection. Some days I cope others I don't.

Macmillan gave me a grant for clothes because nothing fits me anymore, I was so incredibly grateful for it as DH has been paid off from his job and money is an issue on top of everything else. The biggest hurt has been caused by the very organization I felt would support me. My fostering unit I have been with over 20 years has washed its hands of us. They don;t return calls or reply to emails and this last Christmas was the first year they didn't send us a card. Stupid small things like this hurt deeply.

Next week I have to have a radio-active iodine treatment for my thyroid problem. I joke about glowing in the dark but the thought of not being able to sleep in the same bed with my husband of almost 40 years is killing me. I know its only for a few weeks but it seems the time you need comfort you can't have it.

This has been so catharticsmile I'm off to give myself a shake now.

Warmest wishes to everyone this disease has affected and thanks to Macmillan for all they do x

Twitterqueen Wed 20-Feb-13 12:50:32

My now exH was diagnosed over 4 years ago - it was made pretty clear there wasn't much hope and we had an early Xmas in hospital with the DDs and full Xmas dinner that I'd cooked at home and bought in. I had to tell the DDs their father was very probably going to die.

He has now recovered after a bone marrow transplant.

I had no help (apart from friends who knew the truth). The nurses didn't know my name, didn't talk to me, didn't offer help - or excepting one occasion over 3 years, ask if I was OK.

The consultants wouldn't speak to me because I wasn't the patient.

I was a total non-person.

mumwithovertime Wed 20-Feb-13 13:38:57

My mum died of cancer in October 2011,she had been ill for several years and had previous incidents of cancer but a year before she died we were told she had a few months left,initially following the terminal prognosis she was able to stay in her own home and a Macmillan nurse visited her there,I never met this nurse but believe mum got on ok with her ( the rest of the family were not offered any help at this stage ) mum lived longer than anticipated by her doctors but following a spell in hospital where she was placed on the Liverpool care plan ( and then taken off it ) she spent the last few months of her life in a nursing home.Because there was no homes with the right facilities in her own town we had to find the most suitable one near to where she lived,this is where I feel let down,not by the care home but by her gp who wasn't allowed to keep her as a patient even though she had been mums doctor for years and mum had limited life,so she was faced with a new gp for the last 5 months of life.Similarly Macmillan sent her a new nurse as she had moved out of the area of her first nurse,so at an extremely difficult time mum had to start again with macmillan , when the nurse visited mum for the first time she was completely uninspiring,she didn't spend much time talking to mum or myself and seemed to care very little ,after the first visit she came back several times but only in circumstances where mum had been unwell and on one occasion the nurse was suggesting blood tests which were completely inappropriate ,she didn't ask mum how she felt about more tests,I told my mum she could say if she didn't want the tests( mums gp did not think she should have them ) mum didn't like her and the times I met her she was standoffish with no real compassion and certainly no offers of help for mums family ,we were never offered counselling by Macmillan.In the last week of mums life the home tried to get her to visit as we needed help with palliative care and pain relief for mum,she never came ,I think she may have been on her holiday or at least having a week off but no one else came from Macmillan and as mum had days to live surely this would one of the most important times for Macmillan to be there.In the end we found help from a wonderful nurse from one of our nearby hospices ( not Macmillan ) who dealt with all mums needs and wrote to me after mum died offering support,she was exactly what I would have expected ( but did not recieve from Macmillan ) just a beautiful ,compassionate and informed person who was exactly right for the job......so no,I don't support macmillan but other cancer charities, sorry to say but you don't always get it right and maybe some staff are in the wrong job!

Rindercella Wed 20-Feb-13 14:25:09

My husband died of cancer in April 2011.

During the time we didn't realise - or perhaps want to realise - just how bad it was and that he was terminally ill. I think information to patients (and their close family) is key. Access to a single point of contact from the unit treating them is also key. When DH's health rapidly declined we found it very difficult to speak to anyone - his GP didn't want to know (probably running scared of getting sued for missing it in the first place). Once, when desperately trying to speak to his oncologist, I was told we couldn't as his secretary doesn't work on Fridays! I mean, a patient is dying of cancer, is in an obscene amount of pain and he is not able to talk to the one person who could possibly give him some relief because the bloody secretary doesn't work on Fridays - it beggars belief.

So, a single contact (or perhaps a couple, who work on rota) who is accessible regardless of the time of day or day of the week. People do not just get ill on a Tuesday at 11am when it's convenient to medical staff.

In response to Macmillan's question, what helped us cope? I actually think the only thing to help us cope was knowing we had to. Cancer is totally indiscriminate; it doesn't care who it attacks, or when. Nothing can prepare you for seeing the full extent of its cruelness until you see it happening to a loved one. Somehow you get through it. You can call on the available resources, but you need to know that they are there. Macmillan are fantastic, but I really do wish we had been given access to them early in DH's diagnosis. The way the nurses kicked in, got his pain relief sorted, his DLA sorted, etc., was invaluable. But I wish we had had a Mac nurse with us throughout the year-long, horrendous journey.

To all who have lost someone to this bastard disease, you have my deepest condolences. To all those affected by it, I wish you much love and strength to come through it and the best of luck with your treatments.

SparkyDudess Wed 20-Feb-13 14:29:13

My then 52 year old DH was diagnosed with prostate cancer last July. He was tested as part of an investigation into something totally unrelated, and it's in the 'active surveillance' stage.

I think prostate cancer is very hard to deal with, because afaik, it's the ONLY cancer where you sit and wait for it to get bad enough to treat. For all other cancers, the treatment option is obvious and usually immediate.

DH is now struggling to live with having something 'evil' inside him, it's consuming him. As a result, he is leaning towards surgery just to be rid of it, but in his highly emotional state, he isn't considering how he may feel in 2 years time when he's fully well again, but may both incontinent and impotent.

I phoned our local MacMillan centre with his agreement, and they have been amazing. They found and contacted the nurse allocated to him, and she's gone out of her way to rearrange the appointments he refused to attend at the end of last year, she got his latest blood test results back in less than 24 hours, she's talked things through with me as he can't face talking to her directly.

She's been very compassionate, understanding and has been able to provide DH with enough reassurance that he is at least willing to go to an appt next week to look at the non-surgical options.

It's very isolating for me - DH doesn't want anyone to know until he needs treatment, so I can't discuss it with any of my RL friends and offload at all. The MacMillan nurse has helped me there - I haven't done much offloading, but I know I can when I need to, and she's offered to make herself availble either F2F or on the phone to suit me.

I think the immediacy of appointments offered has been helpful, but common sense tells me that this feeling of revulsion at having 'that' living inside you must be very common, and it would have helped to have anticipated it.

vladthedisorganised Wed 20-Feb-13 15:40:57

I lost my mum nearly three weeks ago to lung cancer. She was diagnosed four months before she died, after months of being told 'it can't possibly be lung cancer, because you've never smoked'.

In our experience MacMillan were fantastic: the nurses would come to see her on a weekly basis, talk through the treatment she was receiving and answer any questions she might have. She also had a single contact in the oncology department who made sure things happened - she was brilliant when blood tests got mixed up and the like.

What helped us get through it? I guess the thought that we could all make Mum's life miserable by moping over the fact she wouldn't be with us for long, so deciding to make the most of the time we did have together. It was really hard and I sobbed a lot in private, but what was important was that she was still the same person inside.. not a frail patient. Mum wanted people to know but didn't want to tell them over and over again, so I tried to take that on for her.. not the easiest of tasks.

What I learned.. to fight like crazy when you think something's wrong. A friend refused to leave her GP surgery until she'd had an x-ray booked for a persistent cough and I would do the same now. I think GPs really do do their best, but they need encouragement sometimes.

What I wish.. apart from the obvious (a cure for the disease and that Mum was still here telling me it was high time we decorated), I do wish that it was more obvious what was available to non-resident family. My Dad could get signed off to help Mum out, but as a non-resident carer I wasn't able to and just got time off work for the funeral. I'm sure there are counselling options out there but I have no idea where or how to arrange it.

youmaycallmeSSP Wed 20-Feb-13 16:04:44

thanks vlad

And everyone on this thread who has lost someone, physically or not, to cancer.

What seems to be coming across loud and clear is the need for everything to do with coping with cancer made more available. I believe Macmillan are ideally placed to do this.

After 18 months since my diagnosis there are still things I'm finding out by accident rather than because the information is freely available.

Off the top of my head: the fact that cancer patients get free prescriptions.
I wasn't told this by anyone in the hospital, I found out from a relative who had also had cancer some years earlier.

Any more anyone?

weegiemum Wed 20-Feb-13 17:21:53

My own experience is a bit 2nd hand, but ....

My dh is a rural GP. He works in an area with few local hospital beds for terminal care, and only 2 hospice beds. He's done a large amount of training and is a "home hospice" provider - letting people die happily at home. He always says that as a doctor, giving anyone a good death is as important as giving them a good life - to them and their family.

He has told me on many occasions he couldn't do what he does without Macmillan. One of their nurse jobs where he works is currently vacant and its made everything harder for everyone. He regards them as indispensable. When both my uncles and my auntie were dying, the whole family came to rely on Macmillan - it's one of the few charities we give to unconditionally.

lisad123everybodydancenow Wed 20-Feb-13 19:27:52

Message withdrawn at poster's request.

ChaChaDigregorio Wed 20-Feb-13 20:46:38

What helped us was finding out we could get a second opinion which saved a years worth of chemo. The second opinion then saved the function of my dh's leg. Hospitals will tell you they have gold standard care, but a generic doctor cannot know as mch as a specialist at somewhere like the Marsden.

MrsShrek3 Wed 20-Feb-13 21:35:00

DH (46) has Non Hodgkins lymphoma, diagnosed last July after almost two months of indecisive appointments about the lump in his neck.
I'm sorry I'm not in a hugely "talkative" mood just now, should probably say more, could do on a good day... the best support ever was people on here who gave me straightforward advice - mostly simple practicalities like where to get info, telling me to do online shopping, reminding me to reel in any offers of help such as people willing to take any of the children off for a bit, feel like I wasn't going mad. We chose to tell very few people in RL, just family and close friends, obv his work and only my line management. Very hard path to walk, but better if it's not so lonely. The challenge doesn't go away when chemo ends, either. It's only the half of it.

spiney Wed 20-Feb-13 22:14:14

Husband has had cancer twice. Tumour in eye. Eye removed. Then cancer in liver. Parts of liver removed. We have 4 children. I can honestly say it has been the best and worst of times. Best:The love and care that people show you. The focusing of your mind onto what really really matters. Feeling deep love. Worst:Being co-opted into this exclusive club that you never asked to join. The fear.The fear.The Fear. It never leaves you and just drains away at everything. It is exhausting. And not being able to fix things.

During those times my husband I talked about longing to be just " ordinary ". Not singled out by this terrible disease. You become quite special in a way that is so isolating. In essence no one can really do it for you. You realise, grimly, that the choice is yours alone. That it is upwards or downwards. Sink or swim. Whatever happens. Whatever the outcomes. My children got me through. Their presence alone took away any alternative. Simply, I felt that because of them I had to be strong. End of. It is a lonely choice but so far it has served me well.

The awful, creeping cloyingness of this disease invades your life and means you almost think about it most of the time. You never hear about the TEDIUM of having cancer. Second time round I worked right up to the day before my husbands liver op without telling anyone. It was such a RELIEF to be at work, being busy, living my life and pretending not to be connected to Cancer.

In all those grim, sad times there were wonderful moments. A kind word. A hug. Sweet gestures sometimes from people I felt I hardly knew. From people I didn't know. Food people brought. Offers of everything. You feel those moments very sweetly and deeply then. You remember them. I would recommend you make those gestures to anyone you know who is suffering. They are such a contrast to your terrible inner world.

The doctors are just people. All of them seemed to try very hard. And seemed to care to a point. God, you think, they must see this all the time. How do they do it? It is terrifying when you realise they DON'T know everything. That they are having a go, trying things out and generally bashing around trying to get it right like most of us do everyday. On balance I have full admiration for them. I couldn't do it.

Good Luck to everyone out there suffering with this disease. My heart goes out to you. Good Luck to me.

Thumbwitch Thu 21-Feb-13 13:34:55

Very simply - being able to ask questions and have them answered clearly; several doses of Rescue Remedy; not being dismissed over concerns and allowing the possibility that complementary therapies can provide useful adjunctive relief (aromatherapy, nutrition, aloe vera etc.)

My mum died of Ca colon - we weren't told that she had it or was terminal until 8d before she died, although we believe she knew and didn't want us told. The doctor who told us was very good at the time but then distressed Dad later by looking straight through him as if she'd never met him when he tried to talk to her. However, the hospital where she died (she couldn't be let home, despite her desperate wish to be) did kindly move her to a single room in ICU, and bent the rules a little so my sister's children could come and say goodbye.

My Dad has had Ca prostate - Royal Marsden have been fantastic and continue to support him with check ups; they have a good support group there too, I believe. He is technically clear of it but his PSA has just started to rise again so they're keeping a watchful eye on him. They were happy for him to use aloe vera on his radiation "burns". The patient support group has been an utter godsend to Dad - when he started to get really tired after his 5th radiation treatment (having felt fine before then) he tried to fight it, but one of his support group told him off and explained that it wasn't like normal tiredness and you need to give into it and rest. He did, it helped.

My niece had a brain tumour on her cerebellum when she was 21mo. Well she probably had it before then but it took 3-4m before it was diagnosed. Her GP thought that my sister was neurotic, or that my DN had an ear infection; the hospital were clearly irritated and told her that the problem was either tonsilitis or teething hmm. It took my sister taking DN up to UCH paediatric A&E to get the right response, by which time my DN had lost the ability to walk because her balance was shot, and was fitting occasionally ("febrile convulsions", said the GP, despite there being no fever). Luckily DN had the tumour removed (well, 98% of it) and is still checked every year - she's now 8 and doing well.
I (unfortunately) forget who it was that helped my sister with the DLA / carer forms, but whoever they were, they deserve a gold star for taking on the job.

I need to be checked to make sure my bowel is in good order, because of Mum. But in the meantime my GP made sure that my vit D levels were checked because there is an association with low vit D and cancer risk, especially bowel cancer (and infertility and MC is associated with low vit D too). There needs to be more awareness of vit D in the UK; its associations with health/disease and the fact that most people are low in vit D now because of the way they live, the sunblock society, the lack of it in the diet etc.
I was below normal range, so take 1000 IU vit D3 daily. And eat oily fish and get a bit of sun (but not too much, I'm now in Australia, it's dangerous).

Knowledge of possible preventative measures for family members of cancer sufferers is helpful to some (like me) - then we can take steps to help us avoid it as much as possible.

amouseinawindmill Thu 21-Feb-13 17:58:57

Macmillan were available on the phone to listen to me panic about the mortgage and my fear that a critical illness claim would be rejected, and to offer advice,between xmas and new year when we were in limbo, knowing DH had cancer but not able to get any information from the hospital until after the new year.

Their information leaflet specific to his type of melanoma was invaluable. We could give it to relatives rather than having to explain the same things over and over to different people.

Shabbatastic Thu 21-Feb-13 18:04:50

Really glad to find this thread as we have just lost a young relative today.

I don't know how to get DS through this? Is there any support out there for teens affected indirectly by cancer?

The cruellest disease thanks to all affected.

Lumley36 Thu 21-Feb-13 18:42:09

I was diagnosed with cervical cancer after having a smear test ( a year late ) . Luckily it was very early and it was removed and I had a hysterectomy. It was a huge shock to me and my family , tomorrow i will be one year clear, but the message is obvious GO FOR SCREENING. Saved my life.

funnyperson Thu 21-Feb-13 20:29:25

My mums best friend from uni has just been diagnosed with lung cancer. She was and is like a favourite aunt to me.
It helps knowing she is being looked after by a world class oncology unit.
It would help more if the macmillan/marie curie nurse explained her cancer and (poor) outlook to her
It would also help her knowing the detail of how chemotherapy might make her feel and whether she will be OK living at home alone whilst having chemotherapy and what support there might be to help her stay at home.
The internet says median time of survival is 8 months but no one has told her that. It would help to know what the options are when her time is near.
My dad doesn't have cancer but he spent 3 months in hospital and is home now-blinded and frail and not walking and I am so angry with the nhs and I have posttraumatic stress disorder so I am in agreement with those who think counselling could be usefully available for relatives of those who have died/are suffering.

Thumbwitch Thu 21-Feb-13 22:05:07

Shabba - so sorry to hear of your family's loss. Have you tried www.winstonswish.org.uk/? They have a section for 'young people' that your DS might find helpful.

MrsDeVere Thu 21-Feb-13 22:23:34

I would try the Teenage Cancer Trust too.

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.

zzzzz Thu 21-Feb-13 22:54:09

My father helped me cope, and I miss him every day.

Information on-line about his cancer, helped.

The wonderful nurse from the hospice who made beds and chairs and drugs appear.

issynoko Thu 21-Feb-13 23:46:37

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.

elliemax Fri 22-Feb-13 10:26:28

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.

KatieBMumsnet (MNHQ) Fri 22-Feb-13 15:22:10

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)"

Mandz07 Fri 22-Feb-13 19:12:46

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

triplets Fri 22-Feb-13 23:55:39

elliemax I am so very sorry <<hug to you and your twins>>

poachedeggs Sat 23-Feb-13 08:34:36

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.

BadRoly Sat 23-Feb-13 18:40:22

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.

Homebird8 Sat 23-Feb-13 20:48:36

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.

44SoStartingOver Sat 23-Feb-13 21:52:28

My mum had stomach cancer, so we had lots of oohs and has about how rare it was in non smoking, teetotal women. We did not care about that.

Her treatment was mainly gold standard though, apart from when she was admitted onto a general ward when near the end of life before going to a hospice. What did help was a ready stock of oramorph and DLA. We were spending £150 pw on fuel, £35 on congestion charges and about £100 pw on parking at st Thomas hospital. The DLA meant we could visit.

A brilliant wig before chemo meant when she was out and about when she felt up to it. A blue badge was a big help with that. We also spent loads on wigs as she used to feel a bit better, cook a roast dinner and melt the buggers when she got the joint out of the oven!

When my FIL had throat cancer, his treatment was brutal, but no unkind, just necessary. District nurses were rather better than Macmillan but I guess that is going to be down to the individuals.

I think counselling was offered, but we are a very talky family and sort of did it to each other.

GrammyPissedRUs Sat 23-Feb-13 22:24:13

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.

GrammyPissedRUs Sun 24-Feb-13 01:35:32

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

MrsShrek3 Sun 24-Feb-13 08:03:53

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.

Homebird8 Sun 24-Feb-13 08:11:50

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. thanks

triplets Sun 24-Feb-13 08:55:08

Homebird a very moving story <<hug>> 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 wouldn`t 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 didn`t 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

IlianaDupree Sun 24-Feb-13 13:00:33

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.

Doyouthinktheysaurus Sun 24-Feb-13 20:24:20

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 itconfused 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 eventuallyhmm 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.

invicta Sun 24-Feb-13 21:45:16

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)

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