Tuesday, 16 September 2014

Tips for husbands part four - hair (or lack therof)

Hair today, gone tomorrow
One of the big issues we experienced was hair substitutes. Amanda was quite adamant from the start that she wanted the best wig, money no object. Unfortunately, due to the severity of her migraines it turned out that her expensive wig was too painful for her to wear, but it also raised issues about whether Amanda really wanted a wig in the first place. There’s plenty of advice out there that you’ll find out about during treatment. The important thing is what makes YOU feel comfortable. Bandana? No problem…
Wig? Absolutely fine….
Hat? No qualms with that.

The important thing is to do what makes YOU feel comfortable, and not what others feel is acceptable. This is YOUR condition to deal with, not others. Don’t worry about what other people think, they’re not on the receiving end of some pretty brutal treatment over the course of the next few months. Don’t waste your time worrying about what others might think.

Amanda's husband

If only I looked this good during my bald phase

Tips for husbands part three - avoid clichés

Avoid clichés
“Stay Positive” was something people kept saying throughout the treatment. Despite good intentions, it quickly became apparent that unless you’ve experienced at first hand, the horror and shock to the system that diagnosis and prolonged treatment that the discovery of something so devastating to life such as cancer leads to, words like this become scoffed at.

It’s hard to stay positive when your body is pumped full of poison.

It’s hard to stay positive when you’re having to sit helplessly in a room next to the bathroom listening to your partner vomit repeatedly for 12 hours, when the emergency doctor visits to try and make severe pains disappear only for them to return.

It’s hard to stay positive when you’re having to take your partner to the hospital after a migraine so severe that even a chronic migraine sufferer is at the end of her tether, then have to go to hospital only to stop twice on the way to be spectacularly ill then spend three hours in Accident & Emergency only for them to be able to do nothing.

It’s hard to stay positive when your partner’s dignity, appearance and personality are stripped to the core. The years of nurturing, the years of dry hair shampoo, the years of hair straightening, the years of immaculate presentation, all removed with just a few cuts of a hairdresser’s scissors. (Amanda decided to shave her hair off and donate her hair to the Little Princess Trust which provides real-hair wigs to boys and girls across the UK and Ireland that have sadly lost their own hair through cancer treatment. More info here http://www.littleprincesses.org.uk/)

So if you don’t feel like “staying positive”, don’t.

Amanda's husband

Errmm...we don't really

Tips for husbands part two - nothing is too much trouble

Nothing is ever too much trouble
·         trips to the chemist for piles cream
·         trips to the local supermarket as your wife has a craving for her favourite snacks/’cancer craving’
·         picking up prescriptions, trips to the hospital – seemingly trivial things
·         trips to the local Harvester for bowls of “all you can eat” salad

Your partner is bound to feel low during her treatment. Arrange for friends to drop in surprise texts/treats at intervals during the course of the treatment. One thing that worked well for Amanda was arranging for her friends to text her with random memories of their friendship. During particularly heavy days, many messages would come through, lighting up the mood.

Little surprises
Has your partner got a pastime or hobby? I arranged for Amanda to be sent a signed football shirt from her favourite football player of her beloved football team. Think outside the box on how you can get things like this arranged.

Make allowances for things
Fortunately I work from home, but had very understanding support from my employer and teammates who allowed me as much time during treatment to support Amanda with hospital visits, emergency hospital visits that I needed. Be upfront and honest with your employer throughout the course of treatment.

Nothing is too much trouble - EVER!

Amanda's husband

Tips for husbands part one - communication

Share news if appropriate
I’m a heavy social media user and found Facebook a very useful way of communicating progress of treatment with both Amanda’s and my own friends. One such communication received over 30,000 shares on Facebook when we became involved in the “no make-up selfie for cancer” craze in March 2014 which went viral. Now this obviously won’t sit comfortably with all people – you may find that you don’t want to share this over social networks – that’s fine, chat to your partner before jumping in with it.

Text updates
Provide weekly updates on your partner’s progress. Friends may not necessarily want to bother you with phone calls during periods of uncertainty. Sending a group text once a week keeps people in the know.

Amanda's husband

Friday, 12 September 2014

Where are all the survivors?

I read voraciously from the date of my diagnosis right through treatment. That's why I wrote this blog really, in order to provide some of the information I was searching for and never found. One thing that really concerned me though when I was reading up on breast cancer on a variety of websites was that I would read a fascinating thread or blog about someone's breast cancer journey and then they would vanish and I would wonder what had happened to them. I sometimes filled in the gaps and not in a good way. Now I'm a fully paid up member of the survivors club, I can tell you where most of these women are...they're just getting on with their lives and have largely forgotten all about the cancer!! Although many women, a lot braver than I am will have died from this hideous disease, statistics show that the vast majority will be out there trialling new haircuts, wearing pink ribbons and working, laughing, running, socialising and quite simply living their lives without thinking about those who are wondering what happened to them. So don't be disheartened by the radio silence after cancer, be heartened. And I promise I will try not to forget to keep you updated on how I'm doing!


My fellow survivors

Post cancer car boot

One of the things I did after I finished chemo was to throw out anything that I associated with that time of my life. I ditched the nightie I wore to throw up in on the first day after chemo, all the fleecy comfy tops I wore after surgery, the various lotions and potions I kept in the bathroom cupboard and even any magazines and books I associated with chemo. It felt fantastic! A couple of weeks ago I even donated my wigs to the hair salon at the hospital and being a visitor rather than a patient was an amazing experience. I felt like this 'out with the old' activity really helped me to feel like it was all over with and to clear some space - real and head space - for the new me. I would seriously recommend it!


Cancer and migraine

During cancer one of the hardest things for me was suffering from hideous, untreatable migraines. I was desperate to find a solution and spent thousands on private specialists that simply couldn't help. After my first chemo, the agonizing migraine I got lasted nearly two weeks. Although not as severe, I continued to suffer right until my fourth chemo. After that I had a wonderful break of over two months. The migraines are back now to their pre-cancer levels, which my acupuncturist attributes to the return of my normal hormonal functions, but I've learnt a lot about how to manage them during cancer. Firstly, ask for the Ondansetron to be taken out of the FEC mix - if you're prone to migraines, this will exacerbate them. Begin having acupuncture before your first chemo to give your body chance to get used to it. I also think that this helps with your digestion, meaning that you can take the medication without being sick. Speak to your GP in advance about medication that can be injected rather than taken by mouth. When you're being sick all the time, it's harder for your body to digest your normal tablets. And take magnesium, 1000 mg a day if you can. (Check with your oncologist first, but mine was fine with it). A combination of magnesium and B12 seemed to really settle things down for me. Finally, avoid wearing a wig for too long. For me, ten minutes would be enough to trigger a killer migraine. It's tough experiencing cancer and migraine - a challenging combination, but bear with it, and all being well, you will manage them a lot better than I did.


Me on a bad day

Cancer and friendship

One of the many good things about cancer is that your friends and family rally round and do everything they can to make you feel better. I honestly could not have felt more loved and supported throughout the process. A good friend asked me at the weekend what the best thing to say to someone who has cancer would be. I just said that the best thing is to be honest. Don't be afraid to ask about what the sufferer is going through, what's happened so far and how they're feeling. Be led by them. If they don't want to talk, I'm sure they'll tell you. But you may be surprised. I feel that it's really cathartic to talk about it, and I am much happier when people are open and honest. If anything, I would avoid telling them how to cope with it or what to feel. It's hard to stomach when people tell you to be positive when it's your arm that's being pumped full of chemo, your hair that's fallen out and your head down the toilet! And, when it comes to presents - cards, flowers, books, DVDs and treats, there can never be too many! One of the absolute highlights of the last six months was the tremendous generosity of my amazing friends and family. If you can make someone's cancer journey a little less onerous then absolutely do.


There's nothing in this unfortunately

Fighting fit

I felt pretty proud and emotional this evening as I completed what might seem to the outside world like a pretty normal kick boxing class. Last week I also managed to run 10k, albeit pitifully slowly, which I consider to be a significant step forward (if you forgive the pun). When I was going through cancer, I longed to know what it would be like on the other side, and read lots of negative stuff about ongoing fatigue, chemo brain, weight gain and other fun stuff. Well, although everyone's different, apart from feeling a little more tired than usual, and not quite shaking off the dry mouth, I feel pretty great. My fitness levels have returned almost to pre-cancer levels, my brain seems to be functioning as well as ever (apart from some odd confusion when it comes to dates for some reason) and I feel like I'm well and truly back. So if you're longing for the end of treatment, hang on in there...when you're better, you will recover very quickly, so relax, look after yourself and your time will come.


Do you want a medal? Errrrm yes please!

I'm going to be completely honest here. I'm twelve weeks post treatment, have a passable haircut and am totally back in the swing of things. People I see regularly never really mention the 'C' word and it's business as usual. There were many, many times during chemo when I longed for this moment...and now it's finally here! So, now for the confession...I actually feel like it's a bit too normal now and that people are pretty much assuming that I'm fully recovered. I sometimes wish that people would acknowledge what I've been through and what a major achievement it's been. So, if you know someone who's been through cancer, then tell them you're proud of them, that they've done amazingly well and you haven't forgotten what they've just experienced. I'm certainly not suggesting that we deserve a medal. Ermmm...well actually, if there's any on offer, why not?


Real gold would be better please