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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

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.

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