Listen to the Boots Feel Good Forum podcast with Macmillan Cancer Support and tell us what you think

(33 Posts)
TheOtherHelenMumsnet (MNHQ) Thu 28-Mar-13 11:06:06

We hope lots of you tuned in to the latest Boots Feel Good Forum when it was on air, but if you missed it, please listen to the podcast. The show discusses the life-changing effects of cancer, from how to talk about diagnosis with friends/family, to how to deal with the visible effects of treatment. MNers have been posting about this all week - please see their comments below.

The show features experts Macmillan Cancer Information Nurse specialist Kate Goldie and make up artist Daniel Sandler - who has created specially designed make up to raise money for cancer charities.

Please do listen to the podcast and then come back to this thread and tell us what you think.

As a thank you for taking part, Boots will be giving a £50 voucher to a poster picked at random from this thread.

If you need any more information or support or just someone to listen if you need a chat you can speak to a specially trained Boots Macmillan Information Pharmacist in your local Boots store or call Macmillan's team of experts on 0808 808 00 00 or visit their website - www.macmillan.org.uk/Home.aspx.

Thanks
MNHQ

The views/content expressed within this forum are those of the participants and not those of Boots UK Limited or its agents.

BoyMeetsWorld Thu 28-Mar-13 18:32:45

Unfortunately this thread feels particularly poignant today - found out someone I know died very quickly of cancer, lots of subdued faces today hmm whenever you hear of a cancer death it just knocks you for six, I always think it is the most 'real' sense of mortality there is as there is nothing any of us can do to see it coming and it's, tragically, so common now.

My darling dad died of prostate cancer a few years ago. So many emotions resulting from that and also one - potentially controversial - question:

Is chemotherapy for cancer really a good route? Dad got so much worse so quickly once he started, it was shocking. Ditto the lady who died this week hmm it makes me wonder how long they would have survived if they'd just taken their chances & if they would have died more "themselves" than guant, wasted away shadows?

Apologies if this upsets anyone and of course I support trying to treat cancer, but I do question whether treatment goes one of two ways - it cures people or makes them far far worse and death come quicker? hmm

lilmamma Mon 01-Apr-13 09:43:09

I also wondered this, my auntie passed away last year, and she refused chemo, she said due to her age, failing sight, lost her only child etc, there was no reason and she was 77 and had, basically had enough, and dint see the point of chemo, whereas if she was younger, she might given it a go. a friend of hers, her husband had the chemo and was so sick, ulcers in the mouth and couldnt eat, violent episodes of diarreah, and he got an extra 3 months, which he was very ill, and my auntie got longer, but died peacefully, and in no pain. Also my dad has friend in his late 60s, he has chemo which shrank one of the tumours, but he now is very ill, legs have gone and sick all the time, so it does make me wonder if it is worthwhile, and does it depend on the type of cancer you have, and how advanced it is ?

MrsDeVere Mon 01-Apr-13 16:08:17

My daughter got cancer at a pivotal moment in her life.
She was twelve and just becoming independent and thinking about her looks, boys etc.
Cancer took all that away.
At at time when she was intensely private (remember being 12-14) she suddenly had no privacy.
Her life and her body was no longer her own.

She had to put up with invasive and intimate treatment plus being cared for by me, her mum, all over again.

My poor, dignified, shy girl.

When she became terminal. When I told her that they could do no more for her. She cried. Not because she was going to die. She cried and said 'I just want my body back'.

My precious girl had enough of being prodding and poked and weighed and measured.

She wanted her body back. To be a young woman again and not a patient.

We gave her that much.

Remember that these are PEOPLE with cancer. NOT cancer patients. Not, as one nurse said ONCE 'the leukemic'. She was my girl who had leukemia. NOT a leukemic.
She needed to keep some control of what was happening to her and her body.
She needed privacy and she needed her dignity.

She became anorexic because of the constant focus on her weight.
I suspect this is a fairly common occurrence in teenagers with cancer.

I don't know if that makes sense. I don't know if I make sense anymore.

MrsJohnDeere Mon 01-Apr-13 20:47:05

I am currently having chemo (methotrexate IM) for gestational trophobalstic disease. I've had 5 weeks of treatment so far, with at least another 9 to go. I feel a bit of a fraud being here because this is a very rare but highly treatable - fingers crossed! - form of cancer, and I know most other people's experiences will be much more unpleasant than mine.

I've been lucky so far in that I haven't had mouth ulcers and only had eye problems for about a week or so. The things I've really struggled with are nausea, fatigue, and I feel really cold all the time (even though my body temperature is actually a little on the high side). If you have any top tips to help with these things - particulalrly the nausea - that would be really helpful!

In terms of the emotional side of having cancer, I find other people's reactions quite hard at times. I live in a small village where everyone knows everyone, particularly those with children. Some friends and neighbours have been absolutely fabulous - helping out with the dcs, offering moral and practical support, hospital visits, popping round to keep me company etc. But others, including some family members, don't seem to know how to handle it. It's like they can only see the cancer and not me anymore. They don't want to talk about the cancer so they don't bother talking to me at all. It is quite hurtful.

upagainstit Mon 01-Apr-13 22:07:20

Never underestimate talking, when mum talked i always changed the subject or told her not to worry about that now. so did everyone else in the family probably more so than me. when it came to planning her funeral i always look back now and wish that i had listened to her. did we do what she would of , is there anything i missed. it would of been an awful conversation to have in detail but i so wish i had let her do it.

DyeInTheEar Mon 01-Apr-13 22:21:40

MrsDV I am so sorry for the loss of your lovely girl and for what she went through. Your post does make sense and is incredibly moving.

My beloved Grandmother has terminal cancer. It seems churlish being upset about this because she's had a long and happy life and has experienced many wonderful things. However her pain and her fear are still very real and I'm anguished seeing her suffering. I want to show pictures of her to her nurses because she looked so different when she was full of life. It feels like she's more cancer than person - but it's still her - the outspoken, funny and loving grandmother. Her loss is going to be immense and like all of our loved ones she's irreplaceable.

What we are struggling with as a family is how to fulfil her wish to die at home and arguing. She is in a hospice but wants to be at home but there is no one who can care for her full time. I feel terrible that things like school runs, jobs etc get in the way when I wish I could just be with her in the final two months she has left.

Her fear is the thing. How can I help her not be so afraid?

likesnowflakesinanocean Mon 01-Apr-13 22:37:16

i dont think you can stop her being afraid, ultimately there isnt anything reassuring you can say because nobody knows. but you can reassure her that you will do everything possible to make sure it is how she wants it to be. my mum gradually accepted it and would say she had made her peace with it but then when she was very ill she would cry and say why me, what have i ever done. i never tried to answer just told her very simply that i didnt know. that she was strong and i was there. the fear of it being awful and painful can be managed with the right palliative care and support which is something that you can help to get in place for her. sorry your having to go through this.

moonbeggs Mon 01-Apr-13 22:57:48

My mother was diagnosed with breast cancer some 23 years ago when I was weeks away from my uni Finals. It turned my entire life upside down from the path I was then on, feeling so helpless at being able to do so little.

23 years ago the treatment for breast cancer was mastectomy, radiotherapy and a then-new drug called tamoxifen. And a large dose of crossed fingers and the ever-present, clammy fear of relapse.

Now it's neo-adjuvant (pre-op) chemo, to shrink lumps, then lumpectomy, with perhaps sentinel node biopsy to see if it's localised, followed by conformal radiotherapy and/or targeted chemo depending on cancer type. The prognoses are so much better, especially for younger women and those with early diagnoses.

I don't think that the fear goes away though, not until it's been in remission or cured at least 5-10 years. If it gets to that stage in the first place.

(Mum is still alive at 81. And she's still afraid of it coming back.)

I had a suspicious mole removed 18 months ago. It was deemed "pre-cancerous". I am very fair but don't sunbathe - am I likely to get skin cancer at some point in my life? Even though it wasn't serious at all, it was a shock

CMOTDibbler Tue 02-Apr-13 12:24:02

Daniel, do you have any advice on makeup for the body to cover the little blood vessels you often get with radiotherapy?

fairygnomi Tue 02-Apr-13 15:29:48

Mrsjohndeere don't feel like a fraud, any form of cancer (or disease of any type) is equally as valid as another. I was diagnosed with an aggressive form of breast cancer in November, and automatically went to online forums for support/advice and I find that on a lot of these there is almost a competition in who has the worst diagnosis.
The hardest part of my diagnosis was finding that it is a genetic fault, I find I can accept that for myself but feel guilty (weirdly) about the chance that my beautiful sisters and nieces might also face this in the future. Actually, I lie the hardest part was giving up trying for a baby and face the possibility that I may never have children (they harvested my eggs before chemo but the pct refuses to fund more than one year of freezing or future ivf; so that's something else to worry about)!
But my attitude is embrace life as much as possible (between treatments) which is why I'm off to topless sun bathe for the first time in my life, whilst I still have my original boobies!

tallulah Tue 02-Apr-13 17:48:59

MrsJohnDeere, have you told your docs about the nausea? They can give you steroids with your treatment that can treat it. I was horribly sick after my first chemo cycle and they kept adjusting the medication until it stopped.

What I found quite difficult was that I had bowel cancer, which has no noticeable visible legacy, so make-up/ wigs etc is irrelevant. There is this huge public awareness of breast cancer, and anything for female cancer patients seems to be geared up for breast cancer. Bowel cancer by its very nature is embarrassing, as are its long-lasting after-effects.

I didn't lose my hair, nor did I lose weight. I didn't look ill. But the chemo still knocked me for six and it was months before I was as physically able as I'd been before (which wasn't much).

I worry about it coming back. All anyone can "advise" me on is to not smoke/ drink and to eat healthily - avoiding red meat and eating plenty of vegetables. As I have never smoked in my life; rarely if ever drink and have been vegetarian since I was 16 this advice is not helpful. Especially as the biggest legacy of bowel cancer is that I can no longer eat vegetables sad

I find myself nodding in agreement at things posters have said, and am moved beyond words by MrsDeVere's insight.

It's the fact that I can never quite forget I have had cancer that I find one of the most difficult things to deal with. A news story about a famous person who has been diagnosed/died from ths wicked illness, a charity event to support treatment, a Facebook status inviting me to share a poignant post in support of people dealing with cancer - all these serve as sharp daily reminders that I am a member of a club which no one chooses to belong to and it's a life membership. My question is at what point -if indeed any - does it cease to be a daily thought in our lives and become a distant consideration? Does anyone ever feel that they are free if cancer? I am 18 months post-treatment and 14 months in remission but had a scare last month which reminded me that I am not at all confident that cancer is a thing of the past for me. Will I ever feel like that?

Much respect and support to everyone on this thread and their loved ones.

tallulah Tue 02-Apr-13 23:29:25

SweetestThing yy. I'm 2 years post surgery and 18 mo post chemo, and like you wonder when you feel it's past. My oncologist said the further away from treatment you get, the better. I'd seen some stats about recurrence on the internet and he talked me through my risk, based on my circumstances, and it was much reduced. But it's still there in the back of my mind.

MrsJohnDeere Wed 03-Apr-13 07:42:48

tallulah your post struck a chord with me and rekindled the anger and frustration I felt when my lovely FIL died (12 years ago). He was incredibly careful about what he ate, drank little, never smoked, exercised a lot, looked to be in fantastic shape, and was a fantastic doctor (one of those rare ones people rave about). He died in his early 50s of pancreatitis. sad

Dh keeps saying with me that he almost wishes I had lost my hair (albeit temporarily ) during chemo so that people would know what was happening to me and would treat me extra kindly out and about. If you look 'normal' people expect you to feel normal too, and don't understand that you feel like you've been hit by a bus.

Re: nausea meds, I'm starting some new ones tomorrow. Got a prescription today but frustratingly the pharmacy don't keep them in stock. My situation is a strange one because I'm under the care of one of the big London hospitals but I live 2 hours away so all my chemo etc is done at home by agency nursees who aren't quite as clued up about my type of cancer as I might like. I haven't seen an actual doctor for 5 weeks.

Tallulah, I am a picking looking at prognoses and recurrence rates because I don't want to be scared! and also haven't asked my oncologist for the same reason. I am working on the principle that unless and until I am told I should put my affairs in order, I should carry on as normal. That means keeping myself as fit and healthy as possible. Am I being an ostrich about this?

MrsJohnDeere - it's the fact that you can lead a healthy life, like your FIL and many of us on this thread and your body still lets you down that really rankles. I feel as if my body, which I have tried (and still try) to look after, has totally betrayed me and I feel very resentful of that. I'm sorry you are feeling isolated with your treatment being so distant from the oncologists - can you contact them easily to raise any questions or concerns?

A picking = avoiding!

GinetteandWill Wed 03-Apr-13 10:52:49

My sons school recently sent home a letter asking parents to be vigilant and let the school know if our children develop chicken pox or any other infectious illness, as there is a child within the school receiving treatment for cancer.

My son has already had chicken pox so hopefully this won't be an issue, but what happens if his 2 year old brother who hasn't yet had chicken pox comes into contact with it? Can my 5 year old pass on the infection even if he doesn't become infected himself?

I have so many questions about this, but feel very uncomfortable asking within the school environment, I want to be helpful and let the school know of any potential problems but I also don't want to be paranoid and reporting every little illness to the school.

I think there needs to be more education and awareness for parents about the risks, and what we as fellow parents can do to help support the parents of children who are ill.

DisorganisednotDysfunctional Wed 03-Apr-13 15:28:39

We were lucky to have a specialist cancer support centre in our town, offering non-medical things: alternative therapies and counselling. I was extremely surprised that the only alternative therapy my DH really got something out of was faith healing. He was an agnostic and usually quite a sceptic, but faith healing really got to him in a deep way he couldn't explain.

I suppose I shouldn't be surprised, because it ties in with other things. It was very important for him (and me too) to have a church wedding, not because we're devout Christians but because we saw our marriage as a spiritual rather than a civil service thing.

My DH's diagnosis was terminal and I started specialist bereavement counselling 9 months before he died. I would passionately recommend this to anyone in my situation. I was able to start to come to terms with our inevitable parting while he was still with me. As a result there is nothing we did not say and, although I will probably miss him to my dying day, I have no regrets.

tallulah Wed 03-Apr-13 16:34:56

SweetestThing, not at all! In fact I really don't recommend looking into recurrence. I caught the stats on a news site quite by accident and was terrified. I think it's quite sensible to just do what you can to keep healthy and try not to think about it. Shame I can't take my own advice grin.

MrsJohnDeere do you not have a Specialist Nurse? I've had one from the start and can call her about anything, plus she always knows who I am, which is nice. Otherwise MacMillan has a helpline.

Edlyu Wed 03-Apr-13 18:40:22

I had aggressive breast cancer 8 years ago and received great treatment. They threw everything at it -chemo,radio,surgery.

I took part in a trial as I reckoned it was a risk worth taking.Plus there was an added bonus of being followed up for 10 years . I liked the thought that it was almost expected that I would have a future. I know that doesnt make sense but there you go.It worked for me.

However the surgery left me with quite a dip in my chest and a horrible 'dogs ear' under my arm. The radiotherapy left a big square of red thread veins which have still not faded .I was refused a reconstruction as I was too fat (at size 16) which I suppose is a blessing as the thread veins prevent me from wearing low necked tops anyway. The prosthesis's(whatever the plural of that is I mean more than one) are horrible and despite trying to get the best fit I have not yet succeeded. I have to put up with each particular horror for three years until I can try again.

And to add to the list I also developed lymphedema which makes one arm look like an all-in wrestlers . I have to fight to get black sleeves rather than the nasty american-tanesque coloured ones that are kept in the hospital .Tan ones look downright motheaten by the end of one weeks wear and I am embarrassed to hand over money etc using that hand.I am allowed 2 per year.

But I get on with it because I have to. I dont dwell on the horrible parts at all .I have detailed them here because I dont think anyone really knows what it is like to live with the results of such life changing surgery and treatments. I would guess that most (if not all) of my family and friends would happily say that I have not been affected by cancer at all apart from the early days of diagnosis and treatment. I know that when a close family member was diagnosed a few years before me I thought I understood what they were going through. I really didnt have a clue.

Blatherskite Wed 03-Apr-13 18:56:49

This feels a bit silly after the posts above but...

I had a loop excision to remove pre cancerous cells 8 years ago now and have been having annual smears ever since because of the severity of the changes found. I was told the annual smears would need to happen for 10 years. They have all been normal since the colposcopy.

The thing is, now that I'm coming to the end of my annual smears, I actually feel quite scared. 3 out of 4 of my Grandparents died of cancer (my maternal grandmother had cervical cancer) and my mums smears are fairly regularly 'abnormal'. My annual smears, while not fun, are a regular reassurance that I'm OK and I'm quite worried about going back to 3 yearly smears.

Should I be so worried?

Mouseface Wed 03-Apr-13 19:35:13

<holds onto MrsDeVere and hugs for ages xx>

Cancer is a word that none of us want to hear when we find a lump, feel that something's 'not quite right', when you get that call from someone you've not heard from for a while.......

I lost my best friend to bowel cancer just before my 30th birthday. I'm 38 now and not a day goes by when I don't think of her, like thousands of us on here, we all think of those we've lost too soon, too young, just too many. We've read the devastating posts on here, the dreadfully tragic stories of desperate people, willing, hoping, begging for a 'cure', for it not to be so.

Since then, I have lost many more friends to various forms of cancers but also the weakness that it leaves behind.

We're told week in, week out that reducing 'this', having more of 'that' can help reduce the risks of certain cancers etc..... My question is - is that true? Obviously, drinking too much is bad for us, eating fatty foods, smoking etc but friends I have lost didn't drink excessively, nor smoke and looked after themselves.

Q - So, can we actually, really help ourselves to not get cancer?

lisad123everybodydancenow Wed 03-Apr-13 19:55:03

Message withdrawn at poster's request.

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