Thursday 30 October 2014

What do you do?

In my last post I talked about those well-meaning throwaway comments made to people with cancer which might have less than the desired effect. I found it a tricky post to write as uppermost in my mind was the fact that nobody wishes to offend and everybody means to say the right thing. With one man's compliment being another women's slap in the face, it's a minefield for those without privileged entry into a cancer sufferer's chaotic mind. Nonetheless, I hope the post was useful. Your responses were, as ever, thoughtful and touching.

I'm happy to say that I'm back in my comfort zone with this post. It was inspired by the lovely Chriss Green, prolific sharer of my blog for which I'm supremely grateful, who suggested I list things people have said which hit a good spot.

I started scribbling immediately but quickly realised that it was the things people had DONE rather than those they'd said, which stuck more in my mind. So, instead of words, I've listed some of the bountiful gifts and good-deeds people have bestowed upon me over the past ten months. This isn't a definitive list of how to empty your money box or eat up your already hard-pressed time when you find out someone close to you is suffering, and it won't be for everyone, but I hope my experience might offer a few nuggets of usefulness.

And at least I get the chance to say thank you :)

Meals on Wheels
People would ask me to let them know what help I needed. They truly wanted to help - but it feels wrong to ask somebody with a job, various children, a dog, family taxi service and clean toilets to provide, to run around for me when I'm confined to the sofa.

This doesn't mean that help wasn’t gratefully received - even getting dressed was a bit of an effort on my worst treatment days - and so to open my door on several mornings to find a meal for four requiring only a re-heat and transportation to the table, was wonderful. My Meals on Wheels deliveries made me smile and I'd just like to say a public thank you here, as well as an apology for not always returning the Tupperware in a timely fashion.

Picking my children up from clubs and feeding them
Thank you.

Picking me up from home and taking me for a coffee
(and appointments) Thank you.

Supermarket delights
With special thanks to the Marks and Spencer Dine-in initiative.

Bags of healthy food, home-made chocolate brownies, cakes and bought cakes (I'm not choosy)
Thank you.

Loans of DVDs and books
Again, thank you.

Personally, I'm not a great fan of speaking on the phone. I blame my poor hearing which makes the process excruciatingly painful for all parties involved. But I had some sleepless nights and painful days through chemo and receiving texts out of the blue saying simply that I was in people's thoughts, was a great tonic. With my treatment induced lethargy however, responding could take chunks out of my day so I hope you'll accept my apology for the tardy replies.

As above. I have kept them all :)

This may sound terribly materialistic but to know that someone is thinking of you when they go shopping (and I know that often presents came after much research and probing of shop staff's knowledge) touched my heart.

Most practical gift? There were so many! Warm items of clothing went down well – I wore my fluffy pink angora wool socks constantly as well as my Bamboo Chic Lite cardigan. It isn't particularly that treatments make you cold, it's just that our house is Baltic if you aren't running up and down the stairs every second minute.

Most used item? Probably my Anastasia Beverly Hills eyebrow kit. People expressed their delight that I'd held onto my eyebrows – I hadn't ;) Luxury hand and body creams were also a great buy as cancer treatments really dry out the skin. I was lucky enough to be given lots of luscious products I wouldn't normally afford which I'm still using now.

Most tear-inducing? My four-leaf clover bracelet, four-leaf clover necklace (there's a theme here), message and pocket sized hearts. And don't get me started on the hand-made ring given to me shortly after the wedding of one of my closest friends, which I couldn't attend due to an incredibly poorly timed third operation.

Home visits?
I learnt something about myself during chemo: I don't like to see people when I'm ill. I prefer to lick my wounds on my own, cushioned by my home, cancelled appointments and my texting fingers for when things are improving. And then when I'm recovered, that's when I like to see people. Of course, one person's nightmare is another's delight so it's probably worth asking the question.

Showing you know
Everybody wants the cancer to be treated and consigned to the past post haste. Having treatments behind you is wonderful but the fear that the cancer will return is massive. I've needed my friends and family more mentally post treatment than during it. While you're to-ing and fro-ing to hospital for the potpourri of chemicals and radiation assigned to you, you're invincible. The brilliance of modern science and your medical team are all over this little cancer blighter. Pah! Those piffling little cancer cells wouldn't have a chance against drugs which make your hair fall out and turn your bones to putty. 

But when treatment ends and it's you, your body and a measly little tablet fighting the good fight, staying mentally strong enough to banish the fear to the back of your mind can be tough -particularly when every drug-induced side-effect or contact with bugs with a weakened immune system feels incontrovertibly like the return of cancer. Those of us who have beaten cancer or who are in remission are the lucky ones and I never forget that but sometimes the dark thoughts can be over-powering and it's easy to feel a little alone at this post-treatment time.

We're all so busy and I personally find that as soon as one person I know edges out of a crisis situation, another moves in. But showing you know doesn't have to be time-consuming. A word or a hug to remind your friend that you know the shadow of cancer is still pretty overwhelming, or that the side-effects of drugs can be depressing, might be all your friend needs to help them get on with the business of living.

Anyone who's had a baby will know that when your new-born is tiny and cute and sleeping a lot, everybody comes to visit. Then the visits stop and you're left with the magnitude of looking after this new little person who is sleeping less, feeding more and making more washing. Right now is when you could really do with someone holding the baby while you put the tea on.

Cancer is a little bit like that. Lots of people visit at the beginning and it's a very human, touching reaction. But if you're well before treatment starts, this period can be very busy. The same pending-birth-nesting need kicks in and suddenly having clean bed linen, every item of school uniform washed and neatly pressed, full cupboards, full freezer and a sparkling toilet in place before your operation, becomes monumentally important. And then there's the children's schedule to organise for the three weeks post op when you won't be driving - the cancer will not make them miss out on any of their activities mantra beating inside your head - supper to arrange because you won't be entertaining for a while and work to finish for previously made deadlines set smack in the middle of a dose of morphine.

So, I'd like to suggest you take the pressure off yourself. Visits are lovely but don’t feel guilty if you can't rush around the moment you find out – sending a message and arranging to meet once your friend is out of hospital might actually be more relaxing and helpful for both. 

So, that's my list. Can you add any top tips? I love to read your comments.

By the way, did I say thank you enough?? This wouldn't have been a year I'd have chosen but nonetheless, I look back upon it with a smile. I've seen lots more of my friends and family than I normally would and who could possibly complain about that? 

Tuesday 7 October 2014

What do you say?

What do you say to someone diagnosed with cancer?

I've hesitated about writing this blog. Of course, everyone reacts and deals with their diagnosis differently so there can be no rights and wrongs – after all, one man's compliment is another woman's smack in the teeth.

But in my own experience, and in listening to other people who have cancer, there are some common statements issued in good faith by caring souls who believe them to be soothing and consoling, which prove to be the opposite. And as it's frequently said that people don't know what to say when they find out their friend, relative or colleague has cancer, I thought I'd pick out a few classic comments where I suggest you proceed with caution.

Please don’t have nightmares. Much more than the clangers, we talk about the wonderful love and support which gets us through the tricky times. And I can honestly say that nobody has said anything that's made me cross or any more upset than I currently was – apart from the person who insisted on telling me a statistic about prognosis she'd read, but even that was said in good faith.

Compassion, whatever the wording, should never be criticised.

Besides, I'm sure I'm guilty of some of these myself…

We could all be run over by a bus.
Yes, we could, and I appreciate the sentiment. But crossing the road is a risk we take; having cancer is somewhat forced upon us and when we have it, the reality of a premature end is so much more blatant than the potential to find ourselves under the wheels of a bus. I would also say that if we were particularly worried about being run over by a bus, we could take precautions to prevent this unfortunate incident such as never crossing a road. I, and everyone I know who's been touched by cancer, would like to be told the one thing we must do to prevent cancer coming back. And we'd all do it. Unlike not crossing a road, this hasn't been discovered yet.

My friend's brother's sister's cousin had breast cancer twice and is fine.
I understand this one entirely. We all love a success story. Surely when someone has cancer, they also want to hear success stories, right?

Sort of.

But it's a certain kind of success story. Having cancer is about having your mortality thrust in front of your face; however aware you were of it before, it's just so much more immediate now. On diagnosis, I'd suggest there are two questions that people need answered – hopefully in the affirmative: Can I be cured? and, Can I stop it coming back? With cancer, one of the hardest things to believe is that if you're lucky enough to survive the first time, that your body won't get it wrong the next time. When those rogue cancer cells called, your body was found wanting. What logic says your defences will perform better next time? Much logic, actually. There's plenty of research and a wealth of stats to show that your body won't get caught out again and drugs such as Tamoxifen and Herceptin also help your body change its attitude. But whatever the scientists tell us, it takes time to trust your body again after cancer. If you have breast cancer and have had one breast removed, it's really hard to rationalise that you're not going to get cancer in the other one. And next time it might be harder to detect. It might have spread further. It might be more difficult to cure. And even if all the answers were positive, who would relish the idea of another round of treatments?

So, I suggest proceeding with caution in the choice of success stories. Those where people have survived multiple incidences of cancer are another resounding endorsement that recurrence happens. And that isn't something that somebody who's currently dealing with their first bout, wants to think about.

I've just read an article that if you snort three pieces of seaweed (freshly picked that morning from anywhere along the beach between Seahouses and Alnwick on the north coast) on the hour, every hour, they said it could reduce the risk of cancer.
I'm all for well-researched information which has scientific backing. Trust me, I'm as keen as anyone to discover a food source which will give me that piece of mind. But one person's chance hearing can be another person's 24 hours of research and if you magnify that up by all the good folk who've heard a rumour, all of a sudden you're wading through a confusion of unsubstantiated research where much better for your health might have been to relax and read a book. The most helpful suggestions are from those who hear something, carry out the research and only pass on the findings when they've done the work for you. Some people have done this for me and I really appreciate it.

We’re all going to die anyway.
Yes, we are. However, most of us hope that if we do our best to treat our body with respect, we'll live beyond retirement. It isn't something I take for granted but it is a hope. So yes, we will all die one day but when you've just been diagnosed with cancer at 45, your biggest fear is that the day could be forty years earlier than it might have been.

What's the prognosis?
No. Just no. Nobody has asked me this but I was staggered to hear that it was quite a common question and generally from relative strangers. Eeek! I don't think you need me to point out that if somebody hasn't discussed their prognosis, they probably don't want to talk about it. It isn't something you'd forget to mention.

Re chemo aches and groans: at least it means it's working.
It doesn't mean it's working; it doesn't mean anything significant and the inaccuracy of this upsets some people.

Re pending chemo: does it make it easier now you know what to expect?
I think this might be acute paranoia on my part but it feels like the awfulness of chemo is belittled with this question. It's as if, had you'd been stronger or braver rather than fearful for previous doses, the experience wouldn't have been as bad. In truth, knowing what's coming is more likely to make it worse.

You look great.
- when you don't and /or you feel terrible. This offends some people but not me, you can tell me as many times as you like ;)