Saturday, 6 December 2014

Dealing with anger

Throughout my entire cancer 'journey' I haven't felt angry or even particularly sad. Until this weekend that is. I had my first annual mammogram on Thursday. Last year when I was diagnosed, I went private. During my mammogram, the radiographer reviewed my scan there and then, told me I had three lumps, one of which was worrying, and that I had to go for a biopsy the following day. In the NHS, I was extremely surprised to learn that the person doing the mammogram is not trained to read the scan and that there is a FIVE WEEK waiting time for it to be reviewed by a radiographer. This now means that I am set for another horrible, stressful Christmas. This for someone reason has unleashed in me a complete fury! I am absolutely enraged and have so far shouted at both my parents and my husband. Three days later and I am still furious. I have even told my husband to tell people not to tell me to 'be positive' as although they are entirely well meaning, I don't think I can bear to hear that the odds are good (they're pretty terrible), to put it out of my mind (I wish I could but I can't), that everything will be all right (it hasn't been so far) or that of course I should have known that you have to wait for results like they did for their *insert random body part here* test (I feel like five weeks for a wrist X-ray is tolerable, but five weeks to see if you are going to live or die is intolerable). So this isn't the most positive of posts. I do feel though that at least if you know what to expect, you can mentally prepare yourself for the length of the wait. I also think that it's not the most terrible idea in the world to give calm, positive, brave Amanda a few, well deserved days off. Anger is unpleasant for the person experiencing it and the people who have to bear the brunt of it, but it's far healthier to express it than to bottle it up. So let it out, and the people you love will understand. And if you can afford it, do what Debbie and I did, and ease the pressure at a relaxing spa day!!


I haven't had my follow up mammogram yet, I've been told that mine will be in February which means it will be 14 months after diagnosis.
Unlike Amanda's well meaning (but not really) friends, I actually do know how she must be feeling.
I can't say to her 'don't worry' or 'put it out of your mind' because I know in two months that I'm going to be in the same situation as her and waiting a possible five weeks for the results of my first mammogram post breast cancer/chemo.
Only people who have been in our situation can truly know how we feel. It's not just waiting around five weeks for results, actually we've got to live this for the rest of our days.
Before BC, any aches and pains were brushed off as exactly what they were, just aches and pains. Now with every ache and pain comes that shadow of doubt.
Amanda and I have both agreed that actually, we both feel really well, we both look really well and cancer/chemo is becoming a distant memory. And then we're thrown back into 'that life', routine reviews and mammograms and it all becomes real again.
I do think that for any woman who has been through breast cancer/chemo, we should be able to have our mammogram results quicker. Again, until you have been through it then how can people possibly understand how anxious and sick the waiting makes you feel?

Not happy to be waiting, but I am waiting

Thursday, 20 November 2014

For goodness sake - avoid buses!

The odds of being hit (and killed by a bus) are 13 million to one. This is interesting since people seem to be convinced that this is going to happen to them. When faced with my prognosis, which is around a one in two (worst case) to one in five (best case) chance of not being around in five years, people think I will be reassured by the thought that they may get hit by a bus. Unless the people I know are particularly poor at road safety, it's scant consolation. Conversely, the odds of winning the lottery are one in 14 million, so that's slightly more consoling (although winning the lottery and then being hit by a bus would be most unfortunate). It's so tricky for people to face their mortality, and indeed, that of the people they love, so this helps them to rationalise what is really a horrible prospect to have to think about. When you're faced with these kinds of odds, there are masses of positives - you truly learn to appreciate the people you love, waste less time on silly worries and grasp opportunities you may not have otherwise taken. With cancer, you also get to hear how people truly feel about you, which is wonderful, uplifting and incredibly humbling. So I guess you have to take the rough with the smooth. What I would recommend is telling people that you remain positive about your future, but that it's something you need to come to terms with and deal with in your own way. And perhaps suggest that they look both ways before crossing the road!


Getting hit by a bus outside the Cancer Centre - a statistical nightmare

Recurrence roulette

It's a few days until my first mammogram - almost one year to the day since my diagnosis. With Triple Negative Breast Cancer the chances of recurrence in the first two to three years are pretty high - reports settle on between 20% and 40%, and the prognosis is significantly poorer if it comes back this soon. This is largely because there are few targeted therapies for TNBC, unlike the hormone treatments for other types. So, to me, the mammogram is a bit like having a gun pointed at you with three or four blanks and one or two bullets in it. It's scary. There's also the challenge of being told by well-meaning friends and family to 'be positive' when truthfully there's absolutely nothing you can do to change the outcome. It really is all down to chance. So, what can we do to manage this fear? I've done a lot of work on relaxation techniques, read a lot of books on living for the moment (the Power of Now is a good one, as is anything by Brene Brown) and talked openly with friends. My advice is to talk openly to someone who's had cancer. It's impossible for anyone who hasn't been in your shoes (or bra in this case) to understand how you feel, and friends and family want to say something to help you and don't want to think about losing you themselves, so it's hard to be truly honest with them or for them to be truly honest with you. I think that confronting how you feel and being pragmatic without being 'doom and gloom' is probably the best bet. If it's back, you can deal with it then. If it's not, you can celebrate wildly...until next year!


It's scary, I'm not going to lie

Sunday, 9 November 2014

Warning: your hair might grow back ridiculous

Many people advised that my hair might grow back curly. Others said that it could come back a completely different colour. Few predicted that I would be working a full-on 70s Northern Soul vibe only a few months after treatment. My initial joy to have hair at all has now been replaced by wry confusion at this untameable barnet. I am on my first 'big' holiday after treatment. Having a truly marvellous time. However, my 'hair' has taken on a personality all of its own. Formerly straight with a slight kink and a light mousey colour au naturel, it is now a very dark brown, almost black and almost afro. In the mornings I style it to look as pixie-crop-like as possible. Then throughout the day it grows vertically and curls up on itself until it looks like it belongs to someone else entirely. No-one would suspect that I had cancer only a few months ago, but they were right when they could come back curly. And...most of my eyelashes fell out again annoyingly. I would suggest that you give them about six months or so to recover before subjecting them to too much beautification, and as for the hair..embrace it...or start a 70s tribute act.


What I could look like without 'product'

Tuesday, 14 October 2014

The science of cancer - not really that scientific

If you're like me and like to know what you're dealing with, then brace yourself for your three month post-cancer review. Apart from a dreadful misunderstanding where the oncologist thought I said I had put on three to four stone and told me to go to WeightWatchers (I actually said three quarters of a stone), there was very little to report in the session. What I was hoping for was a list of things to do to minimise recurrence, confirmation of whether the treatment had worked and a review of my prognosis. What you actually get told is basically just get on with your life, eat healthily, exercise, minimise your vices and then hope for the best. As cancer is made up of tiny little particles, there's no scan or test to see if it's gone. Instead you just need to attend regular mammograms and ensure that you are vigilant about any bodily changes. So, there's no spreadsheet, report or certificate. Whilst on the one hand that's a little nerve-wracking, on the other you really just have to forget about it and resume life as usual. I'm certainly doing that, and so is Debbie. Cancer...oh that? It was just a blip...


I also had my three month review a fortnight ago (Nov 25th) and pretty much had the same experience as Amanda. I had a thorough examination (whereby I held my breath until the consultant said that all was ok), he then asked me a couple of questions to which I responded with questions of my own but I didn't quite get the answers I was after.
Consultant: 'Do you still have hot sweats?'
Me: 'Not as bad, they seem to have calmed down'
Consultant: 'Are you taking Evening Primrose Oil?'
Me: 'No, I read it contains traces of oestrogen and because my cancer was oestrogen+, I don't want to put more into my body'
Consultant: 'hhmmph'
Me: 'When I have my mammogram, will I only have the one breast zapped?' (I had a mastectomy and reconstruction = no breast tissue)
Consultant: 'You'll have both done'
Me: ' But one is an implant and I have no breast tissue?'
Consultant: 'hhmmph'
Me: 'I have sore knees, could it be from the Tamoxifen?' (Painful joints are listed as a side effect)
Consultant: 'If they bother you then see your GP'
Thank you very much and see you in six months!!


The plan is...there is no plan

First post-cancer haircut

The big day finally arrived on Saturday! I had my first post-cancer haircut. Now I have what has been described by lots of lovely people as a 'pixie cut' or a 'legitimate haircut'. So now, no-one looks at me with that combination of curiosity and pity, and I could quite easily be perceived as having chosen a dramatic cut as part of a mid-life crisis (or maybe to change my appearance to avoid the paparazzi/police). I can't lie by telling you I like it, but it's bearable. Coupled with eyelash extensions (done by a local beautician), I look kind of..OK...maybe even nice! So I have a plan now. I am going to grow it out on top but keep the sides short and then ultimately go for a bob. My hairdresser is looking into how long it needs to be before I can have extensions, and I decided to keep the colour as it is for now (a dark mousy colour), so watch this space. My advice though would be to get it cut as soon as it is about an inch long. Whilst it feels counter-intuitive to cut the hair you have been waiting desperately to grow, a decent haircut makes a huge difference. Just shaping the sides makes you look and feel a whole lot better.

The plan - I reckon I'm four months from number one
I am now 5 months post chemo and have what I can only describe as a pixie cut as Amanda has described already. My hair is growing back dark. And curly. And it grows upbank!
I aren't sure if it's a compliment or not but I've been told that I'm the spitting image of both of my brothers. Thanks for that friends!! Strangely, they're losing their hair whereas mine is now growing thicker and stronger!
However, I will add that I really aren't bothered what colour, texture or direction my hair grows back, at least it's growing back.
For me, when I see Amanda, I always LOVE her hair. She is 6 weeks ahead of me in the hair process so at least it gives me an insight in to how my hair will be very soon.


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

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

Wednesday, 27 August 2014

Patience when you're no longer a patient

My husband will be the first to tell you that patience is absolutely not my strong point. But annoyingly, patience is pretty important as you move on from cancer. I am now about ten weeks post treatment and I'm working, exercising and socialising exactly as I used to. However, whilst 90% of the time I am delighted to be alive/well/doing normal things/not having chemo/allowed out* (delete as appropriate), I am also impatient to get fully back to normal. My hair is the primary cause of my frustrations as, although it looks like a style of sorts, I just truly hate it and can't wait to feel more feminine. I'm also pretty tired a lot of the time and still have about three quarters of a stone to lose. So whilst life on the other side is undeniably great, you must also be conscious that you can't bounce back instantly, and patience is really important. It's also pretty crucial to tell people how you're feeling. They will forget that you're only a few weeks post the biggest trauma of your life and will expect you to be the 'old' you. So, take it easy on yourself. Tell people how you're feeling and try not to dwell on your appearance - the only person who's hung up on it is you.


Tuesday, 5 August 2014

Dealing with fear

This weekend I had a bit of a storm in a D-cup. I noticed that the nipple on the breast in which I had the cancer had taken on a new look. I will spare you the details but it was a different colour to the other one and slightly crusty (delightful!). As I had Triple Negative Breast Cancer which has a high recurrence rate, I was filled with what I can only describe as abject terror. It was very difficult to keep my feelings in perspective and think logically rather than start ordering flowers for my funeral. So, I talked to my husband, shared my fears with my cancer and non-cancer friends and rang my Macmillan nurse. She saw me quickly (first thing on Monday morning) and confirmed that it was nothing to worry about and that it was more than likely due to the radiotherapy. I found the whole experience particularly unsettling as up until then I was beginning to see cancer as an experience from the past not the present or future, but I was jolted by the reminder that I must always be vigilant without being obsessive or panicky. So, my advice would be, if you have any concerns, see a professional as quickly as you can; try not to panic and talk it out with people you trust. I think that fear of recurrence is inevitable, but don't let it take over your life, and as soon as the drama subsides, then there is one will feel absolutely wonderful!!


Sunday, 3 August 2014

Any questions answered

Debbie and I are thrilled to see that people have been viewing this blog. We really hope it's useful. If you're going through cancer or know someone who is, we'd be more than happy to answer any questions you may have. No matter how odd your question is, give us a try! If you post it as a comment, we'll answer it as soon as we can. We hope to hear from you!

Amanda and Debbie

Tuesday, 22 July 2014

Cancer, childbirth and the goldfish principle

I went out with a friend on Saturday who had been through breast cancer seven years earlier. She told me that in a year's time I would pretty much have forgotten the whole experience. Now although this sounds utterly amazing, I am already forgetting the last few months, and it's only been a month since I finished my radiotherapy. My friends tell me that childbirth is exactly the's hideous at the time but you instantly forget as soon as it's over. If you're in the middle of treatment or even worse, at the beginning, I can promise you, you will forget the sharp end of it all, and you'll be amazed at how quickly. If someone had told me this after my first chemo, I would have either not believed them, or plotted violence against them (*joke*), but it really is true. I absolutely promise. So, keep the end date in mind (or "keep to the schedule" as Debbie used to say), grit your teeth and before long you'll be out the other side. Really.


Me trying to remember the last few months

Feeling at odds with yourself

Having received many an appallingly wrapped but fantastic present from my Dad I know it's what's on the inside that counts. However, having been back at work and socialising normally for a few weeks now, I do feel that what's on the outside doesn't match what's on the inside. I'm not entirely odd looking - I have some short eyelashes now, I'm working hard on losing the three quarters of a stone that Docetaxel left me as a leaving gift and I have enough hair to look like it might have been a bad decision rather than a critical illness. But, I don't feel like me. Sometimes, when I'm talking on the phone to a business contact, or laughing with a friend, I will feel so much like the old me that when I catch sight of my reflection, it really takes me aback. I think once I have a more feminine haircut and can dye it (apparently you can't dye your hair for six months after treatment), and I'm back to full fitness, I can start to feel a bit more like Amanda on the outside as well as on the inside. Bring it on!


Me this morning

Guilt or gratitude - that is the question

Now during my cancer experience, I redefined my perception of 'lucky'. Yes, it's really not the best of luck to get cancer at 40, especially when you're a tee-total, non-smoking, clean living exercise freak. However, when you see what others you meet on your 'journey' are still having to endure, you feel like you've really dodged a bullet. Having met up with a tremendously brave lady recently, who has had all sorts of terrible lasting effects from her surgery, and is still battling with the side effects of breast cancer drugs four years on, I felt incredibly blessed to have got through this whole thing relatively unscathed. Another cancer friend is facing some terribly stark choices - the chemo that can stop her cancerous brain tumour from growing any larger has also caused a painful brain bleed and this is a risk she must take if she wants to stay alive for any longer than the paltry two years she has been given. So, on the one hand, I don't feel like I should ride my wave of good fortune by buying a lottery ticket, but I also feel terribly guilty that my story has so far led me down a much more favourable path than many others. And don't even get me started on those poor folk who have an awful prognosis from lesser known (and supported) cancers such as pancreatic cancer. My thoughts and prayers are with those people and their families. I suppose the only thing we can do in this situation is remain grateful for every day we are given, and support those who are less fortunate than ourselves in whichever small way we can. And...plough that guilt into something more positive!


Thursday, 17 July 2014

The End of Chemo

Well I'm now through my chemo treatment (last one was 3 weeks ago), so I'm now at the end of my 3 week cycle too!
So far I feel pretty good. My hair is currently about 1cm in length (if you can call that a length) and resembles chick fluff. My eyebrows and lashes are pretty much very sparse but some little fighters have hung on until the bitter end...unfortunately, there aren't actually enough that mascara can cling too which I've found out many times whereby I've only succeeded in poking myself in the eye with the mascara wand!
Life is slowly getting back to normal but I'm sure that some people think that now I've finished my treatment, I'm ok and back to 'good old Deb'...little do they realise that I'm still extremely tired, especially by an afternoon and am still suffering from the 'chemo brain' and am pretty sure that this will continue for a long time yet.
I will start taking Tamoxifen on Monday and after reading some horrific stories about the various side effects, have decided not to read anymore and to just go with the flow just like I did with the chemo because each and every one of us is different and the side effects we suffer can vary so much from one person to the next.
Amanda and I both had the same chemo regime but she suffered a lot more than I did. In fact I pretty much escaped most of the side effects but unfortunately, Amanda had my share.
Each and every day, I feel stronger and sometimes I look back and can't actually believe that it's me who was diagnosed with cancer. It's a strange feeling now I'm through the 'other side' and it's only now that I can actually reflect on the last six months since my diagnosis and can now say with pride 'I've done it'.
From my own personal point of view, I've tackled each stage head on. I was diagnosed and once I knew I needed a mastectomy, I just wanted to get it over and done with. When I knew I needed chemo, I was the same, I just wanted to get it started and get it finished and now here I am, six months down the line and my body and myself as a person aren't the same as the person from six months ago. One thing that this whole experience has taught me is that we really don't know what's around the corner and that we should appreciate each and every day that we are here.

Wednesday, 16 July 2014

Eyelash update

OK, so it's now nearly ten weeks post chemo and I actually have eyelashes! They seem to be growing far more evenly across both eyes. They're short and not yet ready for mascara, but they're really growing! Hurrah! My hair is also growing more and more each day. I have almost full coverage, and as long as I avoid bright light (which still reveals my head!) it is almost passable as a truly awful hairstyle.


Clearly not really my eye

Guest blog: Being the Dad of a cancer sufferer

When Amanda told me that she had breast cancer the bottom seemed to drop out of my world.  Her sister had died with meningitis when she was fifteen, and for some reason I thought that our family was immune to any more adversity. I had bonded with Amanda from the day that she was born, and had seen her develop into a fantastic young lady, super intelligent, beautiful, and almost too generous and kind for her own good! How could this happen to someone so fit and clean living? It would be so easy to ask why has this happened to Amanda, and why must my family have to suffer again!
However, what good would that do?   Feeling sorry for myself is not my style, and we had to get on with doing our very best to help Amanda through this terrible illness.  In my opinion, in every case I have known  Amanda always seems to know the best route to take, and I really respect her judgement. She suggested that we get things moving quickly, bring things forward as much as possible, thereby  hastening diagnosis and eventual recovery. We used the Nuffield Hospital at that stage, and could have saved ourselves 6-8 weeks which with cancer of course can be so very critical.
Amanda has an exceptional husband, a brilliant group of friends and  a mother and father who love her very much indeed.  I felt that my best particular role was to support Amanda in the ways that I had always done in the past.  Being a father has always come very naturally to me, and I felt that I instinctively knew when she needed my support without ever being told, almost like a sixth sense. That could be by taking her for walk and chat, just calling in to see her unannounced, telephone calls, breakfast / lunch / tea, or whatever else was required at any given time. This seemed to fit in with Amanda’s tremendous support group, and without too much double booking.   
The chemotherapy period was horrendous, particularly coupled with the acute migraine that Amanda suffers from (as I do). Again, just being there to support in any way that you can, and praying your heart out is the very best that you can do. With Amanda being so brave, she inspired all around her to raise their game and somehow we managed to get through it. Some of Amanda’s fellow sufferers were so inspirational too. Debbie in particular showed incredible character when I met her, and lifted me when I felt down. Radiotherapy came next, tiring and not easy, but her husband attended the Cancer Centre every single day. He really was an unsung hero. My wife offered food and love to all concerned which is her strong suit, and every one played their part throughout magnificently!
We are on the road back to normality now, a  very underestimated road. Amanda is back to work, doing her sport and getting her life back. My advice to other fathers who find themselves in the situation that I found myself is to do what you’re good at, be as strong as you can, support your family 100%, and to pray to God for his help… will need it.
Amanda's Dad

Tuesday, 8 July 2014

Guest blog: Being the Mum of a cancer patient

As all mums know, when your child hurts, you hurt. To be told that your child has cancer comes as a devastating blow. Your initial reaction is to want to punch holes in doors and you question what went wrong and why such a decent, clean living, generous and clever person should be the one chosen for this illness. None of this though is constructive or helpful to the patient so what you have to do is accept it and get on with it. The most important thing is to adopt the mood of the patient and be positive and to play to your strengths. If you know you will be stuck in the hospital loo or cry, then stay at home and do what you are good at. Cook a nourishing meal, or buy some food in, buy anything that will make life easier or more comfortable for the patient. Do anything in the background that you can without showing any sadness. Talk about wigs as if it is second nature and watch your child go through all the stages because six months on, after you’ve bought every toilet roll that the supermarket ever stocked and you’ve forgotten what it’s like to go to sleep or wake up without cancer on your mind, your child will be looking better, sounding better and laughing at your jokes.

Amanda's Mum

Monday, 7 July 2014

The Docetaxel legacy

It's two months post chemo and whilst I do feel *almost* normal, there are a few bits of Docetaxel fun that persist. Now I'm not really the poster child for chemo since I had every single side effect going - if I played 'Chemo Side Effect Bingo', I would have been shouting 'house' a lot. However, it's worth preparing yourself for the fact that it does take a while for all the side effects to work their way out of your system. For me the two that are sticking around are the dry mouth and water retention. I'm not sure if they're connected, but basically what happens to me is that I wake up repeatedly in the night with a mouth so dry that it feels like it's turned into a cardboard tube. I drink water, then wake up a while later to go to the loo! I drink all day long and still I have a pretty insatiable thirst, and some days my stomach and ankles swell up as if they're being slowly inflated. It's uncomfortable but not unbearable. I've spoken to the nurse at the hospital and she said that all this is completely normal and could take seven months or longer to fade. So, really it's best to take each day as it comes and not expect to bounce back immediately. Although with this much water retention, bouncing could probably be a good option for me!


Hair and eyelash regrowth - a law unto itself

OK, so this weekend (two months post chemo) I noticed that my non-head hair was having a little growth spurt. Of course everyone's different, but here's what happened with me...My thigh leg hair (which is blonde) must have just started growing back this weekend as it's now about 4mm long. I didn't notice it was missing, but it must have been as it was definitely longer before. I don't think I lost any arm hair. All of a sudden this weekend I also noticed that my eyebrows started growing back and I suddenly had a version of eyelashes. I say a version of, since they are really not what I expected! I would have assumed that they would all start at the same length and I would have a full eye of really short eyelashes. Not so! Instead, they are more like the spikes on a cactus. I seem to have some really long eyelashes that all point in different directions - some are folded, others are growing vertically and some are completely flat. I also have a number of tiny short eyelashes that are pointing downwards (nowhere near a full eye). You can only really see them with a magnifying mirror and mascara makes no real difference to them, but they are definitely growing back. I've become a dab hand at falsies so I'm less impatient now than I was (the 'natural' ones are the best as the thicker ones look very obvious and really over-the-top). My head hair gets thicker every day and I reckon in a few weeks I will look like someone who chose very short hair rather than someone who has just had cancer. I can't wait!

My left eye

Friday, 4 July 2014

Sharing the cancer experience

Before I had cancer I had only done about three posts on Facebook in my life. I've always been a fan of real life relationships and hated to over-share. I am however, married to a social media guru who shares every second of our lives via his social media dashboard whether I like it or not! I have to say though that during the whole cancer experience, this was actually really useful. There are so many people who want to keep up with your news and check in with you, but don't want to disturb you when you're going through treatment. If like me you choose to stay relatively quarantined during the chemo to avoid infection, you'll also feel a little bit out of the loop on your friends' lives. Facebook is a great way to share where you're up to with lots of people and take the pressure of yourself in terms of answering hundreds of phone calls and texts. What was also really lovely was the amount of positive messages and uplifting comments that really carried me through a very tough time. Plus, you can save these updates afterwards and congratulate yourself on how far you've come. It also seemed to inspire others who were having a tough time themselves. So, go ahead and share!


My husband is the one on the left

Cancer, chemo and the weird concept of time

I am nearly two months past the end of chemo and now I've had time to think back, I realise that the concept of time became very fluid during my treatment. I spoke to friend who had just finished chemo when I was about to start mine and she told me that time stood still during the treatment, but afterwards it felt like it had flown by. At the time I was SO envious that she had finished, but also daunted by what seemed like a horrendously long time to wait until the end (six months). After my first chemo I thought that every minute was like an hour, and at some points in the treatment I thought the wait for it to end was interminable. However, things seemed to speed up a little after the fourth chemo and after it's over, time flies by. I've never been a particularly patient person, so it's challenging mentally to know that you're not going to feel well for a long period of time, but my advice would be to stick with it. Aim for as many nice distractions as possible to help time pass - read a lot, walk around the park, watch a box set, write a blog! But be mindful that it will end and when it does you will forget very quickly about the darker moments and get back to your 'new normal' relatively quickly. Then before you know it, you'll look back at your diary and hardly believe it was you that experienced all that!


Thursday, 3 July 2014

How to behave around someone who has cancer

Before I had cancer I'm sure I was guilty of the old 'look away quick' principle whenever I saw someone with a 'cancer scarf' or bald head. Now I'm far more likely to look them straight in the eye and give them a big smile. Every so often when I was out and about (after the chemo had finished), someone would just give me a look. It's indescribable but just lovely, compassionate and open. I would just feel so much better afterwards. I also preferred it when people were just honest with me. Kids are refreshingly honest - laughing and screaming as you take off your hat and reveal your bald head. Some people have just asked me outright if I had cancer and talked to me openly about it. It's easy to forget that the person behind the cancer is still exactly the same (if a little more weary). They can still laugh, chat to you in a supermarket queue and flex their chemo-addled brains that are still whirring away under that multi-coloured scarf. So if you see someone who clearly has cancer, don't shy away from them, engage with them as you would normally. I'm sure they'll appreciate it!


Going back to work after cancer

Now this really is a tricky one, and completely down to the individual. At diagnosis I thought I would be one of those people who powered through cancer treatment, donning my wig, delivering a presentation with a standing ovation and then taking a brief break for chemo. wrong I was. I suffered horribly with side effects, particularly at first, and some days, found even moving from the sofa a superhuman challenge. After I got the chemo side effects more under control, I would rest during week one after chemo, and work from home during weeks two and three. I actually enjoyed the mental stimulation, but found it much easier (and safer, due to the low blood count) working at home in my PJs. One week after radiotherapy I've started back, working at home in the mornings, and going into the office in the afternoons. This is working well as I feel exhausted when I wake up, and it means I can get up later and be at my laptop by nine without battling with the rush hour traffic. I would suggest that you really take your time, and decide what's going to be best for you. Listen to your body and don't do too much. Talk to your colleagues and see if you can arrive at a compromise that will work for you and your employers. I'm going to be working part-time for the foreseeable future as I'm keen to ensure that I get a better balance in my life. There's nothing like cancer for getting your priorities in order!


Radiotherapy - the aftermath

So, after the challenges of chemotherapy, radiotherapy is nothing much. You essentially just have to lie there on the equivalent of a large photocopier whilst the machine moves around you. There's nothing to see, it's not hot or uncomfortable, lasts only a few minutes and the only awkwardness is staying very still with your arms above your head. I had 23 sessions so went every week day for 15 days (they spread the 23 'fractions' over 15 days). Two weeks afterwards I still have a red square covering my left breast but it's not especially sore or uncomfortable. The worst part is not being able to wear deodorant for a few weeks afterwards! They recommend moisturising the area during and after radiotherapy (for a few weeks) with Aqueous cream (huge tubs can be purchased from any chemist for a couple of quid), and using only Simple shower gel, and that does seem to have done the trick. So, there's certainly nothing to worry about with radiotherapy - for me, it was an easy transition from chemo back to normal life.


The kindness of a stranger

Well, I started back to work last week, and as wigs and I do not get along, I have been revealing my semi-bald head to the world. This has been an interesting experience, largely a positive one. I have been utterly floored on many an occasion by the kindness of a stranger. Now don't get me wrong, many people will stare (largely out of curiosity), but most people will either go out of their way NOT to look at you, or will make a kind (completely untrue) comment. I went on holiday last week and was worried about not looking like my passport picture. I commented to the air hostess at passport control, "bit of a drastic haircut since that was taken", and she replied "Well you really rock it!" How lovely! I also went to the Race for Life a couple of weeks ago, and a woman came over to me, and just touched my hand. The simplicity of the gesture and the look on her face just brought me to tears. It was a sense of kinship and community that only people who have experienced the big 'C' would recognise. So I'd say - if you want to go wig/hat/scarf free, do it! You will be surprised by the kindness and empathy of the people around you. (Make sure you wear sun tan lotion though!)


Wednesday, 2 July 2014

Oncology & Nursing Team

Before you are due to start chemo, you will meet your Oncologist. He/she will tell you exactly what chemo regime you will be having. They will also be obliged to tell you of every single side effect known to man kind that could possibly happen to you during chemo or post chemo. To be quite honest, I would let these go over your head. Your head will already be filled with a minefield of information that you will not remember simply from being diagnosed in the first place. Make a list of questions that you want to ask your Oncologist. I had forgotten details from my diagnosis and asked questions about that.
The best advice that myself and Amanda have always agreed on...DO NOT compare side effects and symptoms with anybody else. You are not the same as the next person. Amanda has pretty much suffered from every side effect listed. I haven't. I actually feel that I've 'sailed' through the chemo with minimal side effects. Yes I've lost head hair, this was a cert. Yes, I've been tired. I had continual sickness for 13 hours after chemo no1 and that was it. I had nausea after chemo's 2 & 3 but this only lasted a couple of days tops.
Keep a diary and fill it in on a daily basis. Look back at your previous side effects and be prepared for pretty much the same each cycle.
You will meet up with your Oncologist before each session of chemo. I would have an appointment with mine on a Tuesday before my Friday chemo session. They will discuss any side effects since your last treatment. Anything at all, tell them and they will prescribe medication that could help. This will be waiting for you and given to you on your following chemo session.
The nursing staff on the chemo ward: One word (bar for the odd misery face-there will always be one)...absolutely outstanding, respectful, caring, wonderful people.
You will be taken into a lovely seating area and you will be seated on a very comfy reclining chair. You will have other patients around you. Talk to them and it really does pass the time.
It is a bad enough experience when you have to have that first cannula in your hand/arm, it's the unknown, the realisation that you are an official Cancer patient. It was at this point, at my very first chemo session that I realised, daft as it sounds, that this was serious stuff. The nurses are amazing and put your mind at ease. They will sit with you and talk to you all the way through the treatment. They will explain everything as they take you through the whole process.
The chemo ward itself was lovely. Take a friend or family member. There are coffee and tea making facilities, they offer you meals or sandwiches.
These nursing staff do an amazing job and I often wonder how they do it, I have only been for 6 chemo sessions, these wonderful people have 1000 patients a week passing through the unit who all have Cancer and are enduring treatment of some nature. They truly are Angels.

Final Chemo Complete

What to expect after the last chemo session?
I left the ward with a strange feeling that I couldn't quite put my finger on. I arrived home and within minutes had my first ' I can't believe I've got through it' tears. I left a very long heart felt message on facebook to thank the so many people who have supported me throughout the last six months.
 My last chemo session was diagnosis of Breast Cancer was 30.12.13. 6 months of my life in a kind of blur. You find or I have found that each stage is a process you have to tackle head on...diagnosis, for me, my operation came next, recovery and then the chemo. I don't think I've ever really thought too much about each process in this journey until the process was over and then it was straight into the next stage. Once I was diagnosed, I couldn't wait for my operation, I wanted it over with. Once I knew I would be having chemo, again, I just wanted it all to be over with. Plan your chemo schedule, mark each session on your calendar and once that first one is marked off, you're on your way. On your second, remember, you're a third done. On your third, you're halfway. This type of thinking does help you and really does work!
I keep reading back through my facebook message and part of me still can't believe that it's me I'm referring to. I guess as each day passes by, I will gradually return to 'normal' and start to look towards the future again. Maybe in a few months or even years, I will look back and think of this time in my life as a 'blip' that I went through but came out the other side?
Obviously for now, I have a few months ahead of me that will be a constant reminder..the lack of head hair for a start being the most obvious reminder but since I knew I was going to be having chemo, my thoughts then were 'it's only hair and it will grow back'...If I'm still saying this in 6 months, then I think being tipped upside down into a grow bag may be my next option!!!

Wednesday, 18 June 2014

Get into internet shopping

During my chemo I avoided infection throughout by being super careful. I worked from home (when I felt well enough) and apart from my daily walks, didn't go out very often. I was absolutely committed to getting through the full six cycles without any delays so that meant staying well. This meant that shopping was a definite no-no! So we started ordering from Ocado and I have to say that they were fantastic! They gave us a voucher after our first order, and then when they saw I was going through chemo, they gave us another £20 voucher! They were also really helpful in packing the shopping in the right bags for easy unpacking, and their delivery drivers are lovely. Amanda.

I agree, online shopping is a must. If I ran out of the odd item, I had a fantastic support of friends and family who I could call on and who were more than happy to pick me up the odd bottle of milk etc. I was also super careful and didn't want to risk the thought of picking up an infection purely by running into the shop for one grocery item. Any infection at all and your next chemo session would be delayed but more importantly, your immune system is extremely low and any infection could be potentially life threatening so the easiest option is to not do it!! Debbie.

Eat well during FEC chemo and avoid the fridge!

As it's a month after my last chemo, I've started to look back at my diary to see what I wish I'd known to make my experience easier (I had every side effect going, so it wasn't the best of experiences!). What I've noticed is that the better my diet, the better I felt. I had a pretty rough time with the FEC - vomiting, migraines, piles, fatigue, mouth sores, digestive problems and diaorrhea to name but a few. However, it got easier each time. During the FEC my sense of smell became so sensitive, that if I opened the fridge I would be sick! This meant that I barely ate anything after my first FEC cycle. However, after the second cycle I started to get into a routine of eating a bowl of fresh fruit for breakfast, and plenty of fresh veg (spinach with everything!). I didn't go near the fridge (I would leave the room while my husband opened it!) and we didn't buy any strong smelling stuff. I had a much easier time of it after that, which is largely to do with the fact that as my digestion was better, the medication worked better, plus I was more robust and felt a lot better. So if you can face food, then I'd definitely recommend some healthy, light meals to get you through FEC.

Take suitable precautions when opening the fridge


At the end of chemo, be patient with yourself

As I was coming to the end of chemo (around about my fifth cycle - the second of the Docetaxel) I began to get really excited. I couldn't wait to be free of the constant canulas, hideous side effects and isolation of chemo. I also did a lot of reading and people were saying that you can get really depressed after chemo's finished. I couldn't imagine such a thing since I thought I would be absolutely thrilled that it would be over! However, now I'm four weeks post chemo, I can understand why it's not everything you imagine. My baldness didn't bother me at all when I was going through treatment as I wasn't going anywhere, but it became more awkward when I began socialising again. I was also over-weight from the water retention from the Docetaxel and felt like a huge bald barrel. I was told by the nurse that some of the side effects can last for several months yet I felt under pressure to be the person I used to be - running, working full-time and socialising a lot. My advice is don't expect too much. It is wonderful on the other side of chemo, but it is also a time of adjustment. Be patient with yourself and make it clear to others what you can and can't do. Don't rush back into normal life, but build it slowly. And...the hair will grow back, and the weight subside (mine is starting to slowly drop off now). I promise!
Me, three weeks after chemo ended


Monday, 16 June 2014

The chemo do's and don't list

When I knew that I was going to be having chemotherapy, the first thing I did was consult my friend Mr Google to research diets and/or the best ways of surviving chemo and it's glorious side effects. When I say diets, I mean diets as in the best foods to eat that would give me the best chance of getting through chemo without an infection and hindering my recovery. I found the following simple advice very useful and with only one cycle of chemo to go, I've pretty much 'sailed' through it with minimal side effects. Most of the advice that I researched was actually a case of using your common sense and being careful.
  1. Sleep as and when you need to.
  2. Take short walks, even the shortest walk can make you feel that bit better.
  3. Stay out of crowds (I have not yet been inside any supermarket since treatment started-online shopping is a must).
  4. Do not let anyone visit if they have even think they have any sign of an illness.
  5. Constantly wash your hands.
  6. Don't touch your face.
  7. Eat healthily and drink plenty.
I stocked up on items that I deemed necessary and so far, I haven't actually had the need to use most of them but I know that I had them if I needed them to counteract the side effects of chemo.
  1. A thermometer-this is something that you will definitely need because you have to take your temperature on a daily basis.
  2. Immodium (diarrhoea).
  3. Senokot (constipation).
  4. Rennie (indigestion)
  5. Gaviscon (heartburn).
  6. Antibacterial wipes. Buy the miniature packets and keep them in handbags too.
  7. Antiseptic wipes.
  8. Crystallised ginger or packets of ginger biscuits (nausea).
  9. Countless antibacterial sprays and surface wipes for around the home.
I also made and froze countless healthy meals prior to starting chemo. I would recommend investing in a Slimming World recipe book, they're low fat meals which are ideal during chemo as you won't be burning any energy.On the days where I really felt unwell or had no energy, I knew that I could take something out of the freezer for the following day and that I'd be eating something healthy. I found that making soups full of vegetables were one of the best things to freeze and I've felt better in the knowledge that even when I haven't felt like cooking, at least I've had a daily quota of vegetables.

I had a checklist of foods that I have tried to eat on a daily basis..
All bran cereal to provide fibre.
Pro-biotic yoghurts to aid digestion.
A few almonds daily for energy.
Whole grain toast and peanut butter, again for energy.
Vegetables/meat combo for dinner.

You will have days where you may not even want to eat but I forced myself to eat three meals a day, even if it felt like I was chewing on cardboard. The smallest of meals is better than not eating at all. Debbie.

20 lessons cancer has taught me

  1. All the clichés are true.
  2. There is nothing more touching than someone telling you they would rather be experiencing this than see you suffer. And knowing they mean it.
  3. Laughter, even at the most inappropriate times can be magical.
  4. The thoughtfulness of a friend can make a tough day bearable.
  5. Scars are not ugly but a symbol of what we have overcome.
  6. What you think is a bad day is actually a privilege.
  7. There are some incredibly brave people in this world. And they’re not the ones you would think.
  8. People are put into your path for a reason.
  9. There is joy even in the darkest times.
  10. Being loved is the greatest gift you can ever receive.
  11. Even with no hair, people who love you can still see beauty in you.
  12. You are stronger than you ever thought possible.
  13. Whatever you’re going through, someone else is having a rougher time.
  14. Finding the one you love more than anything is completely priceless.
  15. Normality is seriously under-rated.
  16. You need to enjoy what you have right now rather than dream of what you might have.
  17. Prayers are always answered. Just perhaps not in the way you think.
  18. Peace on the inside can counteract chaos on the outside.
  19. Eating well can make a genuine difference to how you feel.
  20. Patience is not just a virtue. It’s a skill to be learned.
Amanda and Debbie

Triple Negative Breast Cancer - don't believe the hype

When you've been diagnosed with Triple Negative Breast Cancer, your first thought is to have a good read about it online. You'll probably wish you hadn't! There's lots of scary stuff about a poorer prognosis and limited treatment options. However, there are some good points! Triple Negative responds really well to chemotherapy and once you're finished with the chemo and radiotherapy, there's no ongoing treatment, so it's not all bad! There's a specific organisation dedicated to TNBC, and this is a really useful information source. So, don't panic! And, several of my friends (who are also about my age) had TNBC many years ago now and have practically forgotten all about it.


Plan in some celebrations

Now cancer treatment can be pretty arduous so it's important to have some treats to look forward to. I've booked a multitude of holidays, and since my 41st birthday was on the day after my last chemo, I am having another birthday in July when I'll hopefully be feeling a lot better. Debbie and I also had a few appointments with the hospital's holistic therapist and these were brilliantly uplifting sessions to look forward to during our 'good' week (the third week after chemo). Being kind to yourself is so important, so whatever constitutes a treat for you, then go for it!


How to tell your children you have Breast Cancer

The best way to break the news to your children that you have Breast Cancer....there is no best way.
I have three children, two are adults age 22 and 23 and I also have a 13 year old. All three of mine knew that I had gone to the hospital for my results after having a biopsy. I have always been open and honest with my children, no matter what the subject and assumed it would be easier telling the eldest two than it would telling the youngest. Well it wasn't easy telling any of them. All three cried and were understandably upset.
I told them word for word what the consultant had told me and tried to answer any questions that they had.
I only have my youngest at home now and the night I was diagnosed, she wanted me to sleep with her and we lay in bed and I told her to ask me anything she wanted. We both had tears on and off but, I was then and still am a very positive person and I think it's half the battle. You have to stay strong and positive because it really does reflect in the way your children handle the diagnosis.
My youngest has probably suffered the most since I was diagnosed because she lives with me and she sees the effects of chemo, whether it's been the side effects or the general life during chemo.
One thing I have done is promised her lots of treats for when I'm through my treatment (last one next week).
She is old enough to understand that: I can't take her shopping, I can't take her the cinema, I can't do 'normal' things with her that we did before BUT she also knows that it's short term and that life will return to 'normal' once my treatment is over. I have always encouraged her to talk to me about any fears she may have and any questions, she knows she can ask me because I've always been honest and open with all three of them.
My youngest also knows she can talk to her siblings or other family members if she needs to. I also informed her school and they have been very supportive and encouraged her to talk if she feels the need.
I've been very lucky as my whole family, children and friends have been an invaluable support system since I was diagnosed.
My main advice would be to just be open and honest with your children, no matter what their age. You will not be able to hide your feelings and they will sense that something is wrong anyway. Debbie.