Adventures with breast cancer: Happy Christmas!

Adventures with breast cancer: Happy Christmas!: It's Christmas day in two days time. All the presents are wrapped, all the food is in the fridge and freezer, the Christmas tree is up and ...

Happy Christmas!

It's Christmas day in two days time. All the presents are wrapped, all the food is in the fridge and freezer, the Christmas tree is up and decorated - it's only modern technology and the state of the house which is defeating me. Trying to transfer data onto newly-bought mp4 players and a tablet has had my brain working to a frazzle since the small hours of this morning, and still nothing will open and play on the devices. Copying and pasting onto SD cards and onto hard drives in a hundred and one different ways - absolutely nothing works. Why does technology have to be so flipping user unfriendly? I'm doing everything by the book, then writing new books when that doesn't work and doing it all over again, and I might as well just be banging my head against a brick wall. Why can't IT equipment be designed by real people for real people? A task that should have taken an hour or so at the most has so far had me on the verge of a nervous breakdown for over six hours with no end in sight. 

These are presents for Toby, my severely learning-disabled teenager. He will open them and expect them to work first time. I'm getting increasingly stressed out about it all - I just want my kids to have the perfect Christmas this year. I've broken the bank buying them loads of things they will hopefully love. They've all had to put up with far too much this year with me being ill, and once cancer looms it's ugly head, you become very aware that there may not be as many future Christmases as you assumed there would be last year. I just want this year to be able to put cancer away in a cupboard and forget it over Christmas, and concentrate on letting them know how precious and loved they all are - and creating memories for their future, whether I'm there to share it with them or not.

Then there is the small matter of the house - it looks like a bombsite at the moment, with a huge amount of clearing up to do before Christmas morning. Somehow it will happen, but right now it seems like a mountain to climb.

Christmas and chemo revenge together really doesn't work well. The past few days have been really tough, with feeling like death and hurting just about everywhere. Each chemo cycle seems to outdo the previous one, with the total exhaustion just gaining more and more speed, til even standing up for a second or two is beyond me.

This chemo that I had on Monday is hopefully my last ever, if it's done it's job properly. Providing the cancer doesn't come back, or they find that it's spread anywhere else, that's it, I'm done and dusted. I wish I had the energy to party and dance about it, but it will take about 6 months before the side effects completely melt away, and I can fire on all cylinders again. Meanwhile, I'm still having Herceptin every three weeks until next Christmas - the procedure is very like chemo, you turn up and get plugged onto a drip in the chemo-room, and wait til it's all dripped into your bloodstream. Hopefully, it won't cause too many side-effects though. Then I start radiotherapy in the middle of January - 4 weeks of daily appointments Monday - Friday (maybe cancer doesn't do anything naughty at the weekends?), and at about the same time I'll start a Tamoxfen equivalent drug to take every day for 5 years, which stops oestrogen-production, and therefore slows down any potential tumour-growth.

I've also got to make some decisions on when I'm having the second mastectomy. Straight after radiotherapy or leave it a year and maybe have reconstruction at the same time? I'm so not sure about reconstruction. Whatever happens in the boob department from now on will be fake, either a little  cushion I wear inside a bra, or a major operation with an 18 inch scar across my belly so they can take fat from there, shape it like a boob, and sew a new one on either side. I had a long meeting with a Plastic Surgeon a couple of weeks ago, and learnt far more than I really ever wanted to know about how they do the op. The bit about removing part of the cirulatory system from the tummy and reattaching it to the chest wall to create a more natural blood supply was the stuff that nightmares are made of. 

So I may decide simply not to bother. After all, I'm beyond the age where a Porn Star career is a viable option, and will I really want to put myself through a major operation which will lay me low all over again after everything I've been through? I've had breast cancer. On both sides. I have the battle scars to prove it. Do I really need pretend boobs at this stage in my life to pretend that none of this has happened? Probably not. Unfortunately, I have to make some of these decisions in the next few weeks because what I decide will impact on radiotherapy treatments too, and what I don't want to do is make any decisions that will close the door on any future options. Who knows? I might survive another 30 or so years, and decide at aged 80 that I really want a cleavage all over again! Unlikely, but you just never know. 

The family crisis that we faced a few weeks ago is slowly resolving itself. We're not completely out of the woods yet, but we are back on the right track, and things are definitely a lot happier here as a result. 

A very long story that I can't go into here, but we're getting a dog in the New Year. We are complete dog-novices, and it will undoubtedly add to the stress, mess and workload initially, but the kids are so excited about it that it's definitely the right decision. We went to visit Battersea Dogs Home last week and met several of their dogs, and registered with them. They need to do a home visit, and once we've been approved they will help us choose a nice, easy, steady dog who is already house-trained. Most of my friends and family think I'm completely crazy, but we will make it work. If I've survived everything that's been thrown my way this year, a lovable pet dog is hardly going to defeat us! 

The other thing I've started in a very small way is more Laughter Yoga Sessions, this time on Skype, delivering an 8 week one-to-one Laughter YogaTherapy Course, working with a fellow cancer patient. It's working well, but I would really like two or three more people to trial the course with, so please let me know if you might be interested. I'm not charging anything for it, although if you took part and enjoyed it and could afford it, a donation to the Mencap Sensory Room fund would be appreciated. 

I'm off now to get even more stressed with SD cards, and to try the Mary Poppins trick of snapping my fingers and seeing if all our rooms tidy themselves. It will probably be after Christmas when I write again, so all the very best wishes for a splendidly lovely Christmas and a New Year that brings everything you could wish for.

Adventures with breast cancer: A funny old week

Adventures with breast cancer: A funny old week: There is so much that's happened this week- good, bad, scary, funny and kind - that I really just don't know where to start. I always try to...

A funny old week

There is so much that's happened this week- good, bad, scary, funny and kind - that I really just don't know where to start. I always try to tell it as it is, but without compromising anyone elses privacy by revealing anything without permission, or which might come back and bite us on the bum. That's why I use a lot of pseudonyms - "WM", "Mr Lovely" and "Mary Poppins" for instance - they know who they are, but the rest of the world doesn't necessarily need to.

I am particularly cautious about protecting the privacy of my kids - they each have far more to cope anyway with their special needs and disabilities, and all three of them make me burst with pride as to how well they cope. They certainly don't need their lives laid bare for worldwide consumption.

We have struggled on for 6 months since diagnosis, making it up as we go along, and I suppose it was all going to fall apart at one stage or another, and this week it did, with very serious issues affecting two of them. Each situation would have been traumatic at the best of times, but two of them developing within 24 hours, during the weekend before my chemotherapy Monday, has stretched my coping mechanisms to the limits. These issues are both going to run and run for months and will take a lot of energy, commitment and gentle handling to ensure the long-term well-being of both of them, and I'm still reeling in shock, and trying to get my head around what needs to be done for the best. Just because life throws a life-threatening illness at you doesn't mean it doesn't also enjoy throwing another whole pile of stress your way too, and I am also acutely aware that, at least in part, both these situations have been exacerbated because of my cancer. 

It is widely accepted that battling cancer is often the toughest thing people will have to deal with in life. In my case, parenting three disabled children has been much, much tougher. Over the years, though, they have taught me stacks in terms of resilience, optimism, patience (well perhaps that one still needs working on!), resourcefulness and goodness knows what else, which is also probably helping me deal with the cancer nonsense a bit better too. Being a single parent to 3 kids like mine is an excellent crash-course in disaster-management, and I gave up expecting life to be easy a very long time ago. 

When I was a very little girl, I went to a convent school, where the nuns used to wax lyrical about how, if God loved you enough, he might be kind enough to give you a vocation, so you could become a nun for the rest of your life, only wear black, never go out, never look at boys and pray a lot. I was six years old, and this concept made me take up praying as a hobby in total earnest. "Please God, I'd be a rubbish nun, and I want an a really interesting, exciting life". Of course, I wanted him to make me Madonna,with untold fame, fortune and privilege, but she must have got in first because she is exactly a year older than me. At least he gave me the interesting and exciting life I asked for, so I suggest you are always very careful what you wish for!

So having chemo on Monday, a new type of chemo that has a reputation for wiping you out completely, on top of the weekend from hell, was a fairly interesting experience. At least I hadn't had the time or energy to worry about it at all, so I just turned up and did it almost on auto-pilot, having had virtually no sleep whatsoever in the previous 48 hours. Actually it isn't a bad way to approach it at all! This new chemo seems to work on the bones, penetrating them to search out any naughty stray cancer cells that want to party there. That means that my white and red blood cells are in for a kicking too, and right now, virtually every bone and joint is aching and hurting. Not too bad yet, but it kept me awake most of the night, and it is also causing something called peripheral neuropathy, which is tingling fingers and toes, so holding things and doing things is hard and going to get harder in the next few days. Who knows, I might enjoy it! An excuse to do very very little at all! They also put me on steroids for 3 days, which makes me really hungry and only naughty sweet stuff will hit the right note, so once again, the cancer-curing diet will just have to wait. (Oh yes, there are definitely advantages to all of this!). The sore mouth and funny taste is also back with a vengeance, but I've discovered a new way of dealing with it - coke floats! Coca cola with a dollop of ice-cream, and two straws, and lots of loud, rude sucking noises when you reach the bottom. I've become something of an addict over the past couple of days, and I'm just loving it! My pipe-dream? That somehow coke floats turn out to be that elusive cancer-cure that no one else has ever thought of! OK, unlikely, but not only can a girl dream, but I think it's roughly OK to do whatever it takes to get through all this as easily as possible. 

I had a bit fun last night when two charity canvassers turned up on my doorstep at exactly the same time as I was juggling dinner. Young, eager, fresh-faced but totally prepared to keep me standing in the doorway on a cold November night for ages while our dinner was burning. Big smiles, and "How are you doing tonight?" was their opening gambit. A gift! I stared blankly, pulled off my wig, and said in the thinest, most frail voice I could muster, "I'm really sorry, I've just had chemo, and I really can't do this right now". The expressions of their faces were a total picture! I've never seen anyone retreat backwards down my path falling over themselves with apologies so flipping fast in my life. Achy bones or not, I found the whole thing so funny I had to invent a new "achy bone dance" and performed it for my kid's amusement in the kitchen!

Two real acts of kindness have made this week much much more tolerable. Firstly, I'm off for a heart scan this morning. The next phase of treatment which I'm due to start in a couple of weeks is a new wonder drug called Herceptin. Not all breast cancers respond to it, but I'm very lucky that mine should. Over the past 10 years it has increased survival rates for my type of cancer by well over 30%, so I really want some of it. It means going to have a drip in every 3 weeks for a year, but if that means I survive it's a very small price to pay. However, it can cause severe heart damage, and they need to check my heart is strong enough to cope. The chemo I've already has can also damage the heart, so they really do have to check, and I'll need heart scans every three months for the next year. The normal heart scan involves two cannulas, and they can't use my portacath, so with my needle-phobia I freaked out and really didn't deal with the idea at all well. So my oncologist has arranged for me to go to another hospital where they can do a different test, an Echocardiogram, which doesn't involve any needles. It has just so lightened my load this week. I'm not quite looking forward to lying on the table with my disfigurement naked for them to see, and I'm still really trying to get my head around the whole shark bite scar issue, but it will be OK.

The other lovely thing that happened was a new friend, who lives in Canada and who I have got to know through writing this blog sent me the most amazing greetings card this week. She has taken the time and the trouble to download all the hat photos from the Photo Shoot blog post, and has incorporated them into the most amazing card! Thank you Sharon. Between this post and the next, I'll try and take some photos of it to include, so you can just how lovely it is.

If I'm well enough, off to Drama again tonight, the perfect escape when real life just gets that little bit too much like real life.

Adventures with breast cancer: Soapboxes and Cosmetics

Adventures with breast cancer: Soapboxes and Cosmetics: I'm just starting to feel human again, and it's only 5 days before my next chemo, when they change the cocktail to Taxotere which, by all ac...

Soapboxes and Cosmetics

I'm just starting to feel human again, and it's only 5 days before my next chemo, when they change the cocktail to Taxotere which, by all accounts, is an absolute killer. I stupidly googled all about it earlier today, and from being merely frightened I'm now simply terrified. Taxotere is made from the needles of Yew trees, which sounds fairly innocuous, even for this needle-phobe. However the list of side effects seems to be as tall as the Yew tree itself, and some of them are pretty scary indeed. It sounds very clever in the way that it works, though, by blocking the cancer cell's ability to divide and grow, and whatever nasty things it does to me over the next few weeks I'll be hoping that those cancer cells are getting an even more miserable time of it. 

All I can do is shut my eyes, hold my nose and jump into the deep end and keep swimming til I surface again.  I had a great piece of advice this week, which was to treat this whole treatment process just as if it were a job. Except there isn't a "handing in your notice" option.

Debbie and Anita came over today, both such upbeat, happy people, and both left-handed ladies just like me. Three left-handers all in one room on Halloween as well, eh, but without our broomsticks? Once upon a time we'd have been burnt at the stake which would have left the world a much less jolly place. They are both coming to my laughter taster session at Mencap in a couple of weeks' time - with both of them there I really won't have to work hard at all to get the room rolling about in fits of laughter, all in all, a lovely afternoon, even though they did both tell me off for googling far to much for my own good.

Yesterday, I must have been feeling better because yet another news item managed to wind me up completely. There is a new Government-backed report that is claiming that the routine mammogram screening programme is "over-diagnosing" a significant number of women. Lots of people will read this and think it means that they are "mis-diagnosing" loads of ladies. They are not. They are claiming that, of every woman who's life is saved by having treatment, there are 3 others who have all the treatment thrown at them, but would not have died if they hadn't had it. What they fail to make crystal clear, though, is that there is no way of telling which of those four women desperately needs that treatment. The whole report reads like a piece of non-news, a load of tosh, where they seem to be suggesting that playing Russian Roulette is fine, and let's not treat them. Even worse, they are suggesting that the women themselves decide if they think they are in that 75% percent who might not need treatment. 

At the moment of diagnosis, and for several weeks afterwards, women diagnosed with breast cancer are in shock, denial and completely disorientated. To ask them to make that sort of decision will allow many to percieve that this is their "get out of jail" card. Who really wants to go through cancer treatment?  At that point in any woman's life, the temptation to walk away and kid yourself that you'll be okay is overwhelming at the best of times. This report could cause countless women to turn there back on treatment, with disastrous consequences.

Headlines that state that mammograms are causing 75% over-diagnosis will be misunderstood by a huge number of the wider population. Going for a mammogram isn't exactly like having a slice of yummy cake, and many thousands of women already choose not to turn up for their screening appointments. No one wants to have cancer, and there is still an almost superstitious belief that "if I don't go, no one can tell me I've got cancer, so I won't have it". What really happens of course, is that if they do have it and don't get checked early enough, by the time they can't ignore it any longer it may be too late to treat effectively. Surely this silly message is going to feed into this fear, and deter many more thousands of women from taking part in the screening programme? I'm not cynical enough to actually believe that this message has been released to save thousands on the NHS budget, but I can see why many people are thinking like this.

My own case, I hope will act as a salutory case to anyone reading who may be thinking about not bothering to get checked. If I hadn't gone for my routine mammogram (and I was sorely tempted not to bother) they wouldn't have found the two primary cancers, totally unrelated different types, one in each breast. Even on the day of surgery, the surgeon couldn't feel either of them, they were so deeply buried. The scans had shown them to both be tiny, very early stage, that hadn't yet spread. After two operations, including a mastectomy on one side, they found that both had spread, one of them was a whopping 14.4 centimetre spherical ball, and that cancer was already in 9 of my lymph nodes. I am now undergoing treatment with no guarantees of survival, yet I am in with a chance of beating this. If I hadn't gone, I would still be in blissful ignorance, but the cancers by now would have been spreading to loads of other organs, and within a few months I would have become incredibly ill, and it would have been too late to do much about it. Please please please never put off a mammogram, or any other cancer screening you might be offered.

Ranting over, but at least I'm well enough at the moment to stand on a soapbox. Well enough to be planning lunch tomorrow with WM and his sister and brother-in-law, well enough to have nearly contemplated going to the theatre tonight, and certainly well enough to watch a load of rubbish telly for the rest of the evening while WM loses his inhibitions shouting at the Chelsea/Man U match on the other TV. 

Something else happened this week that made me feel a whole load better. I had probably the best hospital appointment ever - a place on the "Look Good, Feel Better" workshop on Monday. It's a charity specially for women with cancer, run by the cosmetics industry, and we were taught how to really use face products and make-up properly, with tricks of the trade about how to pencil in our missing eyebrows, and tone done the chemo-related sideburns that are developing when the hair is falling out of all the places it's supposed to be. For someone like me, who has studiously neglected any form of beauty treatment and avoids looking at my face in the mirror to prevent both fear and depression, this was a totally strange, but strangely pleasant experience. I'm now exfoliating, toning, cleansing and moisturising like the best of them. There were 8 of us in the workshop, with 5 really encouraging beauticians, all volunteers, doing a great job of making us feel like we count and matter, and can actually look quite reasonable most of the time. 

There were two "best bits" for me. One of the beauticians is trained in wig-care, and he really kindly offered to cut the fringe for me so it doesn't go in my eyes all the time anymore. This means I can double the length of time I can wear it comfortably now. The other great treat was the goody bag, a huge cosmetics bag stuffed full of the sort of products I could never normally even think of being able to afford, and some of these things I wouldn't even have known how to use beforehand. It was also quite liberating to spend a couple of hours in a room with other bald ladies, and to feel totally OK and accepted. By the time it was ready to leave, my face was completely madeover, and  even to my critical eye it seemed passable.

So, now there are even more reasons not to tackle that housework of mine, because I'll need to spend so much time at the bathroom mirror to keep up the good work!

Adventures with breast cancer: Eating toast and crossing fingers

Adventures with breast cancer: Eating toast and crossing fingers: Well, I've just eaten a piece of toast, my first food for over 48 hours, and I'm hoping against hope it stays down. Writing this is the perf...

Adventures with breast cancer: The cancer photo-shoot

Adventures with breast cancer: The cancer photo-shoot:   Anita came over last night and wielded a camera to capture for posterity my newly acquired eclectic collection of  crazy hats, and she is ...

The cancer photo-shoot

 Anita came over last night and wielded a camera to capture for posterity my newly acquired eclectic collection of  crazy hats, and she is the only person I've ever met who can take a photo of me that might not frighten small children. They say that cancer changes people, and it has already made me much more confident to be a bit eccentric in a hat-wearing sort of way, and I thought you might like to meet them!

Bright purple, like the lady in the poem

A favourite - but hope I don't look like a lampshade

I love it so much that it deserves 2 photos

Hardly the most flattering - more like Benny from Crossroads

First I bought some turquoise shoes, then found a matching bag, and now I've got the hat..... is there a T-shirt too, I wonder?

This is my "look she's got cancer" hat, and Anita wanted me doing belly-dance moves to match the turban style - or is it because I already have the perfect belly-dance physique?

When you get cancer, you're somehow expected to wear scarves, but the having surgery in both armpits malarkey makes it very difficult to tie them at the back without blindfolding yourself

This one is perfectly ridiculous but beautifully brightly multicoloured, and shows me for what I really am at heart - a Donny Osmond teenybopper

This one really shows off Anita's photographic genius - a naked-headed photo that I'm happy to go public with

 
 Another purple one but with a Donny O theme again


Next, some photos of the wig, which I'm loving more and more and getting stacks of compliments about. The other day in Tesco I bumped into someone I hadn't seen for over a year, and first thing she says is "Oh Yvonne, your hair looks fabulous!". Now most people would have a little dignity, and say "Thank you, you are most kind". Not me I'm afraid. Instead I went "Ooh, do you really think so, you'll never guess, but it's a WIG! I've got breast cancer!" as though having the BC is the most excitingly marvellous thing that could happen to anyone. I think the whole shop, and maybe even those in the street outside, heard me, and must have thought "She's a totally crazy, unhinged madwoman". A few months ago I'd have wanted the ground to swallow me up in embarrassment, but now, with this new freedom that cancer has somehow given me, I just let my newly-found eccentricity have a little bit of party-fun.   

Back to the wig - can't you just see why I love it! Two pictures of the front this time, and one of the side so you can see just what a fabulous cut they gave it. 
.


 

I still haven't had many opportunities to wear it yet, and I'm slowly building up tolerance so that today I managed 3 full hours before it started to get hot and itchy. The one thing that is a bit annoying is that if a stray hair ends up in my eyes, because it's made of nylon it feels as sharp as a needle. It's a small price to pay for having completely hassle-free low-maintenance fabulous hair for the first time ever! 

The last photo turns the table on my lovely, kind, talented, intelligent, witty friend Anita, and isn't she just gorgeous too?! 

 

If you’d like to buy a copy of Yvonne Newbold's book,  “The Special Parent’s Handbook”,  here’s the link to the Amazon Page:

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