H is for ‘Help’

\ˈhelp 

1. to give assistance or support to; 

2. to make more pleasant or bearable;

3. to be of use to 

I started crying on the bus the other day.  I burst into tears at the drop of a hat these days – if someone hugs me a little longer than usual, if a friend drops an unexpected ‘love you’ into an email, if I think about the mountain ahead of me I have to climb, if they show that advert about kittens not being able to find their litter tray.  Really, anything sets me off.  But this time, on the bus, it was the words to a song.  Rag ‘n’ Bone man shuffled on and was singing ‘Love You Any Less’:

Sunlight is too much for you to bear
It’s high time you came up for air
Don’t hide a single thing behind your perfect skin
Don’t keep your secrets in a prayer

There is nothing you can say or do
I won’t cut you loose, no
So break the silence
We know that we can brave it all

If you’re hoping we’ll be home
Don’t be afraid to ask for help
It won’t make me love you any less

It’s a beautiful song about letting a lover (or friend) see everything about you, even the things you’re embarrassed by or ashamed of.   But it took me a while to figure out why that would trigger a tear-tsunami on the bus.  I don’t have perfect skin to hide things behind, I certainly don’t pray, I’m absolutely pants at keeping secrets and I don’t even have a lover to bother with all that stuff anyway so what was it that got to me?  Eventually it dawned on me.  It was the lines ‘If you’re hoping we’ll be home, don’t be afraid to ask for help, it won’t make me love you any less’.

Because asking for help is something I’ve struggled with since day one of my cancer diagnosis.  It should be the simplest thing in the world.  Saying ‘excuse me, I need help today’.  But it’s not.  It feels like the biggest obstacle, the largest wall to try and climb. I mean even Jon Snow would balk in the face of the Wall holding back the wildlings of my fears and anxieties. That’s a ‘Game of Thrones’ reference.  I don’t watch it but it sounds cool.

And I’m not alone in finding asking for help hard. In the cancer chat forums and the Facebook groups for women with breast cancer, there’s almost always an active thread about being afraid to ask for help. But why?  Why is it that when you’re facing a life-threatening illness and treatment that can leave you exhausted and immobilised it’s so difficult to reach out for help? I have a few theories, none of them rigorously or scientifically tested and based purely on my own experience of my breast cancer and interactions with women facing the same situation.  Here we go, read this in your best ‘Top of the Pops’ countdown voice:

Barriers to Asking for Help

1. We’re British – A bit flippant maybe but there’s a nugget of truth in the stereotype of the stoic Brit, all stiff upper lip, no tears please, Monty Python’s Black Knight ‘I’ve had worse’.  It’s not in our national nature to admit weakness or defeat, to accept that now is the time to ask for help.  We keep our chin up and soldier on alone saying ‘I’m fine’ in a cheery tone to everyone who asks even when we’re not, even when by doing so we’re cutting off our nose to spite our own face (Brexit anyone?) and what we really need is a big dose of help.
2. Independent spirit – most of the younger women I know who are dealing with breast cancer right now are strongly, fiercely independent. They manage their careers, run homes, support families, interact with wide friendship groups.  Generations of women before us have fought for our right to lead independent lives and we revel in the freedoms it gives us.  As someone without a partner I’ve lived alone, paid my mortgage, kept on top of a demanding job, thrived on a busy social life and travelled the world independently, happily aware I’m not reliant on anyone.  And then suddenly you might just need support.  And it’s terrifying to admit that you might have to set your independent dial on low for a while.  Going through breast cancer treatment means we cede control over our own bodies to other people.  So to voluntarily relinquish control on other aspects of our lives as well is incredibly hard.
3. Embarrassment – it’s difficult to admit you need help, that you’re struggling, that you’re not coping and it’s embarrassing to have to directly say to someone ‘could you do this for me? I can’t manage’. If being repeatedly asked to strip naked and have your intimate parts pored over and prodded isn’t enough to wound our pride, then asking for help certainly is.
4. Guilt – most of us are swimming in a swirling pool of murky guilt every day – guilt that you didn’t return that call from your mum, that you forgot a friend’s birthday, that you fed your kids fish fingers again because it was easier than an argument, that you ate the last three jaffa cakes in the box (or is that just me?) With a breast cancer diagnosis, you add feeling guilty that you’re a burden to the mix. Everyone leads busy lives so if you ask for help with even a simple task you’re piling on extra weight and, like a game of ‘Buckaroo’, you only need to add one small cowboy hat to set that donkey kicking (people remember that game, right? Or am I really showing my age?). No-one ever wants to be the extra burden, that extra cowboy hat, so it’s easier not to even ask.
5. Fear of rejection – asking for anything always holds the possibility of getting a ‘no’ in response. And when you’re asking for help at one of the most difficult times of your life it’s horrible to contemplate that some in your friendship groups or family might not want to be bothered to get involved. That by testing the limits of those relationships you might find them wanting, and that those you thought would step up actually step away.  So it’s easier not to ask.  If you don’t ask you, you won’t have to deal with the crumbled remains of lost friendships.

All of these things, and I’m sure many more besides, create barriers to proactively asking for help, even when it’s most desperately needed.

If There’s Anything You Need …

It seems strange to find it hard to ask for help though, as when someone is having a crisis in life, be it a serious illness, a bereavement, a period of depression or similar, often the first thing said is ‘if there’s anything you need, just let me know’.  I’ve done it myself, a zillion times.  It’s a default setting, programmed into us by polite society, to fill a gap when someone we know is facing something awful and we’re powerless to directly intervene.  Usually the offer is entirely genuine and well-meant, although it can also be a platitude, spoken as a reflex when it’s hard to think of anything else to say.

In most cases though, that ‘just let me know’ never happens.  There’s a gulf between the offer and the act.  The gulf isn’t intentional, it’s just that by saying ‘let me know’ we put the onus on the person in crisis to be pro-active, usually at a time when they’re daily struggling to function at even a basic level.  We’re asking that person to not only break down all those barriers to asking for help but also be organised and aware enough to come up with ideas of the practical help they need.  And that, in truth, is probably not going to happen so the ‘let me know’ is not acted upon and it’s assumed that nothing is needed.

Now, most ordinary folk do not have Derren Brown-esque mind-reading skills, so don’t expect a friend to suddenly turn up with the specific book or chocolate bar you’re dreaming of that day, but there are certain basics that are pretty common requirements when going through chemo, recovering from surgery, suffering radiotherapy exhaustion (to focus on cancer as the cause of the crisis). So rather than reaching for the default ‘if there’s anything I can do, let me know’, maybe we could think for just a moment about what might be needed depending on the circumstances of the particular person we want to help (whether they have a partner, kids, live alone, are immobile, unable to drive etc) and resolve to do that, without needing that person to pluck up the courage to ask.

I did a quick straw poll on the amazing Facebook peer support group, Younger Breast Cancer Network, to see what my fellow breasties would have loved friends or family to do without being asked and this was their wish list:

• School run – being offered help with getting the kids to and from school can be a life-saver for exhausted breasties, especially if treatment means they are unable to drive for a while;
• Play dates – sometimes a nap in the afternoon is the only way to get through the day when treatment is sapping your energy, so having someone take on the kids for a few hours, or even a whole day, can be heaven. Great for mum and great for the children, who may get fractious when they’re stuck inside all day as mum is too poorly to take them out, or get upset at seeing the side effects take their toll on her.
• Pet care – taking the dog for a walk can be a great way to get a bit of exercise and fresh air, but on some days even getting out of the door could be impossible, so a friend turning up to take the pooch for a poo is a blessing.
• Shopping – the evolution of online shopping means being ill no longer leads to eating nothing but that out-of-date pot noodle you were saving for a hangover, but an offer to get in fresh, hand-picked fruit and veg (rather than the wonky carrot from the bottom of the crate that we all know you get when you order online), and maybe a little treat, is very welcome.
• Meals – chemo exhaustion or post-surgery restrictions on movement can make cooking difficult. Microwaves and frozen meals are a lifeline but a mate popping round with a home-cooked casserole, or even turning up with a take away, can prove a real morale booster.
• Cleaning/laundry – again, chemo and surgery often curtail a breastie’s ability to do basic household chores. So nipping in to whizz round the hoover, stick some laundry in the machine or even put the bins out, can help someone feel more human.
• Company – often all you need when you’re ill is a bit of company. Someone to have a cuppa with, share a few biscuits, a bit of gossip and some crap TV.  And if you do make plans to visit someone, don’t cancel at the last minute (unless you’re really very poorly yourself or there’s a genuine emergency).  You might be the only person they’ll see that day and suddenly having the promise of a visit withdrawn can cause a tumble into a very low mood.
• Messages – let someone know that you’re thinking of them. Check in on them by text.  During treatment not everyone feels up to talking or company but a text message asking ‘how are you?’ can be a reassurance that they’re in someone’s thoughts.  And don’t do it only the once when they’ve just had an op or had the first chemo.  Do it every now and then (you don’t need to be obsessive, no-one needs a stalker).  A simple text message can be as good as a hug on a bad day.

Emotional Help

Not all forms of help are physical, practical ones.  And sometimes, the need for help goes beyond that which a friend, family member or loved one can offer. Sometimes professional support is required. Taking the step to seek that out can be as difficult as asking for help from a friend.  Unlike (sweeping generalisation alert) Americans, we’re not a nation who immediately turn to counsellors or psychiatrists for help with mental health issues.  Despite massive leaps forward in recent years, with plenty of high profile campaigns on mental health awareness, there’s often still some stigma attached to talking therapies.  Well, bullshit to that.  When you need help, you need it and there shouldn’t be any shame in admitting it. You don’t need to shout your therapy appointments from the rooftops if you don’t want to but when faced with a life-changing illness talking to a professional is a powerful coping mechanism. Often cancer patients don’t feel they can share the full extent of their anxiety about their illness, their treatment and their future with friends, partners, parents, siblings etc for fear of worrying them at an already difficult time, so an outside, independent source of support is vital. I took the step of seeking out a counsellor as soon as I was diagnosed and I’ve worked my way through many a soggy tissue in her company in order to be able to be less tear-streaked in my daily life (more on that in a later blog).

There are many paths to getting help with the emotional and psychological scars of cancer:

• Oncology counsellors – most breast cancer units will have access to specialist oncology counsellors and can refer patients who ask for help; your GP should also be able to refer you if you wish.
• National cancer charities – some of the larger breast cancer charities have helplines that can offer emotional support or point you in the right direction to get help, and some have cancer support centres for pop-in sessions – try Breast Cancer Care, Macmillan, Breast Cancer Haven or Maggie’s.
• Local cancer charities – some independent local cancer charities offer free counselling services (my counsellor is from the splendid Cherry Lodge) and your Breast Care Nurse should be able to give you information on the ones nearest to you or dive onto Google.

Medication

For some, counselling is either not possible or not enough and medication to deal with anxiety or depression becomes a necessity.  Again, there is no shame in turning to pharmaceutical support at such a difficult time, to stop the anxiety monkeys running riot in your head and to make the world seem a less intimidating and scary place.  I’m not a doctor so I’m not going even try and offer advice on this one.  Your GP should be your first port of call to chat about the options open to you.

Peer Support

If popping a pill or lying on a couch (although no-one really has couches these days. Ikea’s best armchairs are so psychiatry de jour) is too much then turning to peer support groups can offer a huge source of comfort, knowledge, experience and, unexpectedly but importantly, laughs.  The ones below are just a few of those I’ve stumbled across:

Breast Cancer Care www.breastcancercare.org.uk

There’s a great online chat forum covering everything from breast cancer symptoms and diagnosis to surgery and chemotherapy.  BCC also offer the wonderful ‘Someone Like Me’ service where you can be paired up with a woman in a similar position to yours (both in terms of life style/stage and diagnosis) for email or phone contact and support.

Macmillan  www.macmillan.org.uk

Online information and phone support, plus another useful on-line chat forum, although Macmillan cover all cancers, rather than just breast cancer.

Younger Breast Cancer Network

www.facebook.com/YoungerBreastCancerNetwork

A private facebook group for younger women (45 and under) with breast cancer. A genuine sanity-saving group of superb, strong women whose wealth of knowledge and lived cancer experience is a goldmine.  Their motto is #inmypocket and, as I’ve said elsewhere, at every appointment I’ve had, every scan, every surgery, I’ve felt like there are a 1000 women holding my hand. No matter what time of day or night you post, there is always a swift, generous and honest response.  To sign up, search for ‘Younger Breast Cancer Network’ on Facebook and message the public page.  One of the lovely admins will be in touch so you can join the closed group. Posts to the group will not show up on your main Facebook page.

Building Resilience in Breast Cancer (BRiC)

www.facebook.com/resilienceinbreastcancer/

Another private Facebook group for women at all stages of breast cancer treatment or moving on after treatment has finished. Established in 2015 by Professor Naz Derakshan, who specialises in the cognitive neuroscience of anxiety and depression at Birkbeck University of London, the group helps members engage in guided discussions on research intothe psychological impact of cancer diagnosis and treatment on cognitive health and emotional well-being.

Shine Young Adult Cancer Support

www.facebook.com/groups/shinecancersupport/

One more private Facebook group for adults in their 20s, 30s and 40s with all forms of cancer.  Another great source of support and information, plus lots of local meet-ups.

Help Me If You Can … 

So if as a breast cancer fighter you’re ready to go all Jon Snow (the GoT guy, not the newsy tie guy), climb that wall, confront your wildlings and maybe use one of the ways here to ask for help.  Or you could just put the Beatles on repeat when anyone comes round …

When I was younger, so much younger than today
I never needed anybody’s help in any way
But now these days are gone and I’m not so self assured
Now I find I’ve changed my mind, I’ve opened up the doors

Help me if you can, I’m feeling down
And I do appreciate you being ’round
Help me get my feet back on the ground
Won’t you please, please help me?