Monday, 31 December 2012

Adventures with breast cancer: It will be a Very Happy New Year!

Adventures with breast cancer: It will be a Very Happy New Year!: So it's New Year's Eve, and I really won't be too sorry to see the end of this, a fairly tough year. My heart wants to party tonight, but my...

It will be a Very Happy New Year!

So it's New Year's Eve, and I really won't be too sorry to see the end of this, a fairly tough year. My heart wants to party tonight, but my everything else is screaming "No Thank You". My body just probably isn't strong enough yet.  I'm absolutely great when I'm sitting down, but standing up and walking is a bit of an ordeal, with the weakest leg muscles I've ever had and breathlessness like I've just stepped off a porn movie set. I'm fairly certain this is all a legacy of the chemo boot camp I've just completed, and it's not too bad because I do quite enjoy sitting down.

Partying sitting down is a viable option, of course, but you haven't seen the state of the house, thank goodness. All the signs of a happy but very messy family Christmas still lurk everywhere, and to party means to clean and tidy,  which I simply don't have the energy for today. So I either only invite very short-sighted friends, or those who will get so drunk so quickly that they won't remember the mess, or for the first time in my life, I have a very quiet New Year. 

My kids are all having a good day today. One is off with a lovely family to London Zoo, another has gone bowling then onto lunch with another friend, and my daughter has just got the Christmas present that arrived late - a smartphone with contract,  so I doubt I'll see much of her until every last app has been downloaded. I am beyond grateful to kind friends who take my children out to fun places - the way I feel at the moment I'd struggle to even get as far as the car. I actually haven't left the house for nearly a fortnight - 12 days to be precise - but today, using a shopping trolley as a zimmer frame, the fridge and freezer will have to be restocked one way or another. 

This New Year neatly coincides with all the new lifestyle and eating resolutions I need to adopt in order to give myself the best fighting chance of seeing next New Year and hopefully, a fair few more. I'm not going to set myself up to fail by making too many changes at once, but today I'd at least like to write the list of the necessary changes, then take on one or two of them every couple of weeks. The biggest New Year's resolution has to be winning this breast cancer battle. 

If I didn't have cancer, my New Year's resolution would have to be to finally get around writing a book, or actually several. It's something I've always wanted to do, but never quite got around to it. It would still be lovely to get one written this year, but it's not going to be a resolution, because I really don't need that pressure. Stress and pressure reduction are going to have to be high on the list of cancer-curing resolutions though, which will be hard because I probably secretly thrive on the firefighting. 

2012 has been a difficult year, not just with all the horrid bi-lateral breast cancer stuff, but also with stumbling from one non-cancer crisis to the next. No wonder I'm breathless and weak ! It hasn't all been bad though. Friends and family have showered my family with a squillion acts of kindness, love and compassion. I've learnt a heck of a lot about myself and what really is important about life, and my precious relationship with WM has deepened and strengthened - he has just been a total rock at every twist and turn of the precarious last few months. 

Writing this blog has also been a really positive part of 2012. When I started it was really just intended as a way to keep the people I care about in the loop with what was going on, but it's become much more than that. I'm humbled that people from all over the world seem to enjoy reading it, and the feedback I get from comments, twitter, facebook and via email is just so warm and lovely. Thank you. The readership, whilst still quite modest, is growing all the time, and if anyone wants to encourage this growth by passing on the link to the blog to others, I'd be thrilled to bits. 

2013 already holds some promising excitement. We're turning the blog into a stage play for the Brighton Fringe May - that''s going to be a challenge, but also a load of fun. Then in June, I'll be speaking at an international medical conference about needle-phobia - helping to raise awareness for a very real, but highly embarrassing issue that affects countless thousands of patients everywhere. Neither of these opportunities would have come my way without this blog, which wouldn't have been sustainable without my lovely solid band of supportive readers whether I know you or not. 


A photo I really should have included in my previous blog is of our Christmas Tree, at the moment before the children were let loose to open presents. In our house, because of my learning disabled son who is the absolute king of Christmas with his excitement about presents, we have to hide every present until it's time to open them. This year, they simply wouldn't fit under the tree, so this photo shows the first wave of presents - later in the afternoon there were even more to replace them. Yes my children got far more than most years, but you know what, they more than deserved every last one with all they have had to contend with lately.

I'll write again very soon into the New Year, and meanwhile would like to wish you a very Happy New Year with lots of lovely moments all the way through it. 


Saturday, 29 December 2012

Adventures with breast cancer: Patient Power

Adventures with breast cancer: Patient Power: What a fabulously lovely Christmas I've just had - surrounded by the most of the people I love best in the world - my amazing dad, my lovely...

Patient Power

What a fabulously lovely Christmas I've just had - surrounded by the most of the people I love best in the world - my amazing dad, my lovely sister, WM and my three gorgeous children. So I was up to my eyes in chemo side-effects, beyond exhausted and barely able to stand, but I still managed to cook the whole Christmas 4-course meal with trimmings galore, even if I wasn't able to eat it myself. There were so many presents for the kids that opening them all took all day, with Toby starting at 3am when he discovered Santa Claus had already delivered a sack load of presents on the end of his bed. 

The presents weren't just for the children. I was really touched by the thoughtfulness that had gone into choosing presents especially for me. One friend had taken the trouble to text WM to let him know that BHS were selling a "Coke Float Kit", another gave me a Mint Hot Chocolate Kit, including the mini-marshallows to go on the top, Mary Poppins gave me a really gorgeous mug covered with photos of Toby - every photo exudes his unique joy an exuberance, and another friend gave me some Guatemalan Worry People - 7 tiny little hand-made dolls that you tell your worries to and then sleep with them under your pillow - the worries then melt away overnight, apparently. 

All told, the whole day just seemed to be packed full of love.  There were no rows or arguments, everyone was delightful, helpful and just perfect all day, and to be honest, that feeling of love has lasted all week so far.  Although I packed cancer away in the back of my mind for the week, I think one of the many avantages of having cancer is that it makes me far more aware of the nice moments, more appreciative and much more in tune to counting my blessings, of which there are so many. 

Overshadowing the whole week, though, has been the chemotherapy and how pants it has made me feel. I try to tune it out, and to pretend it's fairly nothing, but it's there and I can't always ignore it.The inability to eat, or to drink, the sometimes excrutiating bone pain, the stomach upsets that sometimes have kept me in the bathroom for hours on end, even during the night, the numbness in my hands and feet which make me clumsy as well as very unsteady when walking, the total, awful exhaustion - not really sleep related, more to do with exhaustion seeping into every bone and muscle - they all combine and make even standing out of a chair seem like a Herculian effort. 

Normally I don't just think I'm going to come through this cancer to live a long, happy and healthy several more decades, I absolutely know it. I'm normally irritatingly, enthusiastically positive about every last cancer cell being obliterated into oblivion. Chemo weeks are the exception. When the chemo is doing it's brilliant job of hunting down and fatally poisoning any stray cancer cell that has the audicity to think it can hang around in my body, somehow all the doubts and fears come flooding into my consciousness, and I spend a week or so convinced I'll soon be pushing up the daisies. This week has been no exception. I try to hide it, and thought I was good at that, but my extremely insightful daughter noticed. "Mum," she said,  "People always say how positive you are, don't they?  Well I can see that you're not at all. What you are is cheerful about it, and people think cheerful and positive are the same things, but they're not. I never realised til now what a negative pessimist you really are." Oops, I'd better try harder in future.

Chemo is over, the whole six cycles, so positivity will come back with a vengeance in the next few days. However, now it's over, I've got to seriously get back on the wagon of eating a counter-cancer diet and adopting a counter-cancer lifestyle. The past four months on chemo have been an ordeal, and at times eating anything at all for days on end has been impossible. Getting through it was the priority, and in the knowledge that the chemo was fighting a mighty battle against any residual cancer cells, I let myself off the hook. Now that I won't have the chemo back-up, I've got to re-establish all the stuff I tried so hard to do during the summer. Green tea by the gallon, exercising daily, spoon-fuls of tumeric, garlic and ginger, shed loads of fruit and veg, and cutting out all processed food. Why do things that are bad for you taste so good? I'm currently into a salami-and-salad-cream-sandwich-on-very-while-bread phase - a glorious cacophony of processed food at it's best.

I feel that my body is like the World War  battlefields. Everytime I eat something good, I can see the enemy cancer cells being chased away by my strengthened immune-system army at it's best, but every time I pop a chocolate or a biscuit into my mouth, I can see the swaggering, smug cancer cell army taking more than a pop at my precious immune system. It's a constant fight between good and bad, and this is the fight of my life and I really want to win it. So why do I seem to have a natural affinity with the enemy? When I eat a biscuit or a salami and salad-cream sandwich, I'm being a traitor to the cause, and I might as well just open the borders and let the enemy sail right on up triumphantly through my whole bloodstream.  This whole constant battle plays out in my head nearly all the time, and it's not just about the food I'm eating. It's the thoughts I'm thinking, the exercise I'm not doing,  and the rest and relaxation I'm not taking.So give it a week or so, and I'll have to write a battle strategy and this time, I'll have to stick to it. This cancer needs all the big-guns from all directions - both what the Generals from the medical profession can throw at it and what this little Home Guard can do on my own. "Who do you think you are kidding, Mr Cancer?" - that's my theme tune now. 

 Patient Power comes in all sorts of guises, both in taking ownership and doing whatever you can to augment the best in modern medicine in terms of lifestyle an diet, and also in finding a way to have a meaningful dialogue with your medical team about aspects of your care that you are not comfortable about.

 If you've been reading my writings for a while, you'll know that one of my biggest challenges with Cancer has been finding a way to cope with my extreme needle-phobia. I've decided early on to come out of the closet and admit this shameful secret to my Oncology Team. Almost without exception, they have been so supportive about it, but it was clear that, whilst being very kind and sympathetic, they were puzzled by it and its causes. I researched into the topic a bit, and although the Internet has a fair amount of material written about needle-phobia, I couldn't find a single word written by a needle-phobic patient, all the articles appear to be written by health professionals. So I wrote a blog-post about it, probably the hardest and most personal piece of writing I've ever done, and probably the first piece of writing on the subject from a patient perspective. It's been warmly received by many of the medical profession, and now I've been invited to speak at a very prestigious conference about it in London next June. I'm thrilled about this on a lot of different levels, not least because I'll get a nice posh day out in a top London Hotel,  but also because it looks like needle-phobia is being taken seriously, and I'm being given an opportunity to raise awareness and maybe even begin to influence medical culture and practice in some small way.   I feel very honoured, but also aware that I have a responsibility to do the best possible job in explaining and advocating  on behalf of the many thousands of fellow-sufferers, many of whom are probably too ashamed to own up to it.

If you know any health professionals who might want to read it what I wrote about this subject, it's in the list on the side with "needle-phobia" as part of the title. Please feel free to pass it on. 

So a very busy year ahead already. The play of this blog, "Coke Floats and Chemo". still needs to be written in time to rehearse it for it's debut at the Brighton Fringe in May. Then speaking at the conference in June. In between times, I'll be fighting my cancer on the beaches, getting very better, and planning a bucket list for my next 30 years. It will be a very good year - the writing's on the wall already. If I don't write again this year, all the very best for a lovely start to 2013.  My heart wants a party on New Year's Eve. My head says "Don't be ridiculous, you're exhausted!". I'll let you know what I actually decide, and my good friends may yet get a last minute party phone-call ....... !

Sunday, 23 December 2012

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.



Tuesday, 4 December 2012

Adventures with breast cancer: A wake-up call week

Adventures with breast cancer: A wake-up call week: I don't normally struggle for words, but trying to find a way to describe the past week and a half of harrowing horribleness has just about ...

A wake-up call week

I don't normally struggle for words, but trying to find a way to describe the past week and a half of harrowing horribleness has just about defeated me. They say what doesn't kill you makes you stronger, but I feel washed-up, broken and battered, and with all the fight sucked out of my soul. So we're not going to focus on that today! Instead, I'm going to tell you about all those tiny little moments during the week when loveliness and kindness pierced through the misery and kept me going.

 Lovely Moments this week!

1. Herceptin day. It was a long, boring day, and I thought that I was at risk of a heart attack. Apparently I wasn't, I'd got that bit wrong. So that was a bonus. Also the nurses pulled out all the stops for me, and were just kindness personified. I also met some lovely people going through the same stuff as me, and what could have been a very scary, tedious and frightening day was made bearable by lovely people. 

2. During Herceptin day I had a real treat! WM bumped into Ann and Vaughn in the hospital reception who we had met at the Penny Brohn Centre. Ann was there for an appointment too. So they came to visit me on the unit, and it was so lovely to see them both. Ann is looking so well and fit and happy, and it was just like meeting long-lost friends. We chatted for about half an hour, and they were able to bring us up to speed on the latest news of Ann's inspirational project. 

Ann was diagnosed in January of this year with mesothelioma, which is an incurable lung cancer caused by exposure to asbestos. Devastatingly shocking news, enough to flatten many people, but not Ann. Instead, has decided to use whatever remaining time she has left (and we are all hoping that that remaining time runs into decades) to fund a very exciting educational project, the Ann Nussey Forest School Project, which aims to inspire a generation of children with a love of nature, giving them very hand-on opportunities to explore. Ann is generously funding the entire first year's running costs from her own pocket, and has set up a "Just Giving" page to raise the rest, and I promised I'd share the link here, so you can find out a bit more.

 http://www.justgiving.com/AnnNusseyForestSchool

3. On Tuesday, it was my lovely sister's birthday, and guess what she did to celebrate? She turned up in the morning and came with me to Chemo! It was really lovely having a couple of hours to ourselves as the chemo dripped slowly into my system, and although we're had many more exciting birthday outings between us over the years, there was something really special about this one, too. 

4. Another chemo bonus - because they had had to access the Portacath the previous day for Herceptin, they allowed me to keep the contraption in place overnight, so no more needles on chemo day !

5. On Wednesday, WM and I managed a flying visit to my favourite hot chocolate cafe at TK Maxx, where they do a hot chocolate to die for - mint chocolate with marshmallows, a mountain of fresh cream and then sprinkle it with chocolate dust - and caught up with his sister and brother-in-law, who gave me probably the most thoughtfully off-the-wall present ever - a whole sheet of stick-on eyebrows! Since mine have completely disappeared along with the eyelashes so I look like something out of a horror-movie on a good day, these new eyebrows will save a child or two the fright of their lives!

6. Then a mega day out on Thursday, up to St Albans for more Laughter Yoga Leader training. A really lovely day out, catching up with Lotte, and meeting new laughter colleagues Mel and Kat, I can now offer one-to-one laughter courses over an 8 week period, on a much more intensive, therapeutic basis. Laughter Yoga has so many benefits, and this course really focused much more on the health and well-being benefits of introducing laughter on a daily basis into all our lives. Once chemo is over, I'm hoping to be able to offer this course on Skype, but meanwhile, I'm going to trial it with a few friends, to gain a bit more confidence. Ann, who I mentioned earlier, has very kindly offered to be my first guinea pig! It is ideal for people like me who are coping with illness, as well as people who have busy lifestyles and can't commit to a regular class, and it also very helpful for people with depression or energy disorders. 

7. On Friday, I had an appointment with a specialist cancer psychologist. Ooh eer. I went in convinced it was a "tick-box" exercise, and that I had no issues and was coping really well, and then it all turned around and bit me on the bum and I realised that it wasn't quite like that at all. A real wake-up call moment, and it's been like a pebble in the still pond, the more time goes on since Friday, the more I'm understanding that I'm just not dealing with everything that's happened over the past few months nearly well enough. I'm doing what I'm best at - telling myself and everyone else that everything is fine, and on Friday I began to see just how not fine things really are. All very sobering, and I can see that once we're through the awful crisis we're dealing with at the moment, everything will have to be rebuilt just a little bit differently which will take the time, patience and energy I just don't seem to be able to muster at the moment. So why is this on my list of "lovely" moments? Because it had to happen, and my whole family will one day become stronger because of it. 

8.  On Saturday, we managed a little birthday party for my sister and Mary Poppins, with Toby, our resident Birthday King, blowing out the candles and opening their presents in the expert way only he can. Thornton's Toffee cake is honestly the very best there is. 

Then since Friday evening, I've been back hibernating through the awfulness of chemo hell, but today it's just beginning to lift. It better had quickly because I think I'm the only person in the country who hasn't given a thought to Christmas yet, so thank goodness for Amazon and Internet shopping - I'm intending to hit the virtual high streets in my pyjamas!



Monday, 26 November 2012

Adventures with breast cancer: Herceptin

Adventures with breast cancer: Herceptin: Today is Herceptin day. This is the wonder drug that has increased breast cancer survival rates by 46%, and they pour it into your veins onc...

Herceptin

Today is Herceptin day. This is the wonder drug that has increased breast cancer survival rates by 46%, and they pour it into your veins once every three weeks for a year. That's the good bit. Unfortunately, some people don't cope with it very well, and as well possibly causing a pretty frightening allergic reaction, it can also induce a heart attack the first time they give it to you. So today, the drug itself takes an hour and a half to get, and then I'm not allowed to go home for another 5 hours, just in case. Apparently, throughout this whole time a nurse will not be allowed to take her eyes off me - I won't even be allowed to go to the loo on my own. All a bit daunting, and a bit scary. Stupidly I looked at the facts and figures on Google last night - about 3% of women get into trouble with Herceptin which sounds very high. OK, so I know that the 97% of women that don't sounds a heck of a lot higher, but we silly humans so often focus on the negative when we're scared stiff, don't we?!

Then, tomorrow, oh joy, it's chemo day all over again. What a fabulously exciting week I'm in for! Actually, I should turn that upside down and think tomorrow "Aren't I so lucky that I didn't have a heart attack yesterday so I'm well enough to get the chemo that will make me live for squillions more years!". Sometimes I'm just pants at all this positive thinking stuff.

This weekend has been about as tough as it can get being a parent. I mentioned a couple of posts ago that there were some big issues affecting my family, well this weekend one of these issues exploded, and everything in my world seems to have collapsed in a heap as a result. I really can't say anymore without blowing away someone else's confidentiality, but I really don't need a heart attack today because I think my heart has already been broken. 

Monday, 19 November 2012

Adventures with breast cancer: Onward and upwards

Adventures with breast cancer: Onward and upwards: It's Monday morning, the start of what I hope will be a really good week. This time last week I thought I was at death's door with the chemo...

Onward and upwards

It's Monday morning, the start of what I hope will be a really good week. This time last week I thought I was at death's door with the chemo side effects, life was not up to much at all. Then, from about Wednesday onwards, the side effects largely melted away, and somehow left me with more energy and wellness than I've had for months. Maybe it's the extreme contrasts between the good days and the bad days, but on the good days lately, everything just seems to be bursting with colour, music, happiness and life.

Last week, I did the first of many Laughter sessions at Mencap, and it was a really good one. No one had been before, but the group really gelled well together and within seconds everyone was laughing like crazy. Laughing for a whole hour is fairly exhausting, but in a very energising way, and the health benefits are really worth having. It's excellent cardio-vascular exercise, the deep breathing that laughter causes really does get the oxygen in and circulating well in the body, the eye-contact and human connection that all the laughter exercises encourage has a very positive effect on self-esteem and confidence, and the whole thing has a tangible "feel-good" factor.

I'm having another session at my house tomorrow evening, and then hosting a session for the Mencap staff on Thursday morning, so at least this one should be a very happy week. Then next week, if chemo side effects allow it, I'm back in training to take my laughter skills up to the next level, which will enable me to offer one-to-one laughter sessions in a much more theraputic way. This will open up all sorts of opportunities to work with people who are housebound, and it lends itself very nicely to Skype, so I can be housebound too! The new training will also enable me to offer 8-week work based courses too, for team building and productivity purposes, but I think that will have to wait until I've completely kicked this cancer into submission. 

It's a bit risky signing up for a course in the middle of chemo, but I'm keeping all my fingers and toes crossed. Next week, because I'm starting Herceptin on Monday, chemo won't happen til Tuesday. The course is in St Albans on Thursday. Normally side effects kick in on day 3, so I'm hoping I'll get away with it, but we'll just have to see.

The other highlight of this week was drama, where we began in earnest to adapt this blog for the stage. It was both hilarious, and quite surreal to see other people playing my dad and WM, and hearing from the rest of the group about what bits of the blog they feel are important. I had a bit of a surprise when I realised that, so far, I've already written 39,000 words, so unless we keep the audience in their seats for several weeks at a time, we'll have to take far more out than we leave in. 

All this means that I'm having to revisit the blog and reread it all taking copious notes. It's quite strange going back over the past few months, and trying to analyse what it might mean to other people, and how best to portray it. What has struck me is that is seems to be a series of conflicts being fought out in my very being and messing with my head, like what I need to eat versus what I want to eat, what I want to do versus what I need to do, turning up for painful treatment after painful treatment versus running away to Barbados, and most of all, the onward march of the cancer cells versus all the medical weaponary and my own immune system trying to capture them and stop them in their tracks. Whenever I think of those cancer cells on the march I somehow end up singing the Dad's Army theme tune in my head, with an image of the German flag crossing the channel. 

It's also making me realise that whether I like it or not, this cancer stuff is subtley changing me too. I can't quite put things into words yet, but I suppose something this big and intrusive in my life is bound to make me look at the world differently. That in itself can be quite isolating, because I'm tuned in differently at the moment to life and seeing things from a slightly different angle, whereas everyone else in my world is just getting on with their lives in a way that I'm unable to in quite the same way for the moment.

I've also had enough energy to tackle a big supermarket shop, and even to half clean the kitchen. Mind you it took ages, I kept having to sit down to get my breath back, and I finally flopped halfway through, but it's a step in the right direction. 

The major issues with two of the children are still as pressing and as worrying as ever, which inevitably is taking a lot of time and energy too, but they are both far more important than a clean kitchen, so they are rightfully taking priority over everything else, and it's painfully apparent that I'm not able to drive both situations in the direction that's needed as quickly as I need to. 

The other thoughts that are beginning to filter in concern my hideously disfigured body.  The 12-inch shark-bite style scar that slashes across the place I used to have a second boob is something I can only deal with by tuning out completely. Then I have to take on board the bald head coupled with the missing eyebrows and eyelashes - altogether not the greatest look ever. The last lot will grow back, but do I want to go through the whole big issue of a breast reconstruction once all the treatment has finished? I really can't get my head around that one. At some point next year I'll probably lose my other boob too, that is part of the plan, but do I want to put myself through yet more major operations, with all their potential side effects, just so I get a cleavage to flaunt to the world again? The bit of the operation I'm quite keen on is the tummy-tuck - they would have to dig out masses of tissue from my very ample tummy to make new boobies, so I'd have a nice flat wash-board belly, but I doubt if Mr Lovely would agree to just that bit and then foregoing the sticking the belly fat where the boob should be bit. I get to see Mr Lovely early next month and I think we'll need to sit down and talk about it all. Sitting down and talking to Mr Lovely will be lovely, and if I do decide to go ahead with new boobies, I'll get to do a lot of that in the next few months, I'm sure. 
 

This week is also the week where I'll start to plan Christmas. I'm seriously considering delaying Christmas Day by 3 or 4 days if my kids will agree, so I can take advantage of the best chemo side-effect days. Don't tell them, but I might even get their presents much cheaper in the after-Christmas sales too! 

So, there's a lot going on, things to think about, things to do, and even a few projects on the go, exactly how I like life to be, and letting the cancer know, once again, who is really in charge. Onwards and upwards, it's going to be a good week.






Sunday, 11 November 2012

Adventures with breast cancer: Hibernation

Adventures with breast cancer: Hibernation: Sometimes this cancer thing really does creep up and knock me for six, never more so than in the past three days where I've been virtually b...

Hibernation

Sometimes this cancer thing really does creep up and knock me for six, never more so than in the past three days where I've been virtually bed-bound with feeling absolutely awful. The chemo side-effects of this cycle have been totally overwhelming, and I just haven't been able to fight it at all. Every bone aches like crazy, and even the strongest pain-killers only lift the edge of it. I'm moving around as if I'm 103, and the pain jumps unexpectedly from one bone to the next, like some really high-tech laser light show.  Then all my finger and toe nail beds have become a bit loose, and even the slightest pressure hurts like mad. Typing like I'm doing now really isn't much fun at all. All I can do is lie in bed most of the time, and I haven't even got the energy to adjust the duvet if there's a bit of a cold draught. Then on top of all of that, the killer runs started overnight, and I spent most of the night on the loo feeling extremely ill. The soles of my feet have blistered, so walking is very slow and painful, and my tongue has swollen, is really sore, and making eating and drinking a real ordeal. This evening, the skin in my mouth has started to peel as well, which gets stuck in an already very sore throat, so I feel like I'm choking. 

Then there's the total exhaustion, sleeping is all I want to do, but a lot of the time the pain just keeps me awake, so I just can't sleep. Instead, all sorts of thoughts flit across my brain, and annoyingly, the good ones seem to pass by and I can never quite collect them properly.


It's when I feel this ill, which has only happened a couple of times during this six-month-long adventure, that I start to actually believe that I'm not going to make it. Depression is lurking as an ever-present threat, but I haven't let it take hold yet, and will do everything I can to stave it off at the moment. 

Depression is the real enemy with cancer, and although it's fine to have the odd day when things just don't seem too great, full-blown depression is something that I'm determined to guard against. There is so much research that show that people who remain hopeful are more likely to survive, and I know that mental attitude is every bit as important as the pharmaceutical weaponary that's being used to save my life.

So I don't like the side-effects of chemo, but I have to remember that I absolutely love chemo itself. If it's doing this to me, it must be really obliterating any stray little cancer cells into oblivion. It's giving me a real fighting chance of being around to meet the grandchildren, and for me,  the only way to deal with the difficult bits of chemo is to  just remember that this is transient, and it's doing me stacks of good. Gratitude as well helps - 30 years ago there simply wasn't the technology to save my life, and even today, in many parts of the world, this sort of treatment simply wouldn't be available to me.

So, I'm trying to regard what I'm currently dealing with as a very precious few days of hibernation. A chance to just stop, shut-down from real-life for a few days, with a chance to perhaps think and plan too, and to count my blessings. 

A lovely piece of research I read yesterday really did bring this into focus. Women with breast cancer, who also have a strong social connection with friends, family and community, have a staggering 61% better survival rate that those who are socially isolated. If that's the case, then I'm virtually home and dry, because my friends and family have really stepped up to this challenge, and have carried me through the past few months with continuous love, support and laughter. WM though, deserves a very special mention. He is doing everything for me, and everything for my kids that I can't do at the moment, always with good grace, patience and humour. I have to get through this, and out healthy on the other side, just so that somehow, I may get a chance to make it all up to him.

Thursday, 8 November 2012

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.

Wednesday, 31 October 2012

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!







Thursday, 25 October 2012

Adventures with breast cancer: Laughing, fundraising, scriptwriting and fog

Adventures with breast cancer: Laughing, fundraising, scriptwriting and fog: The worst part of chemotherapy for me is the total, bone-deep exhaustion, that just makes everything seem like such hard work that I end up ...

Laughing, fundraising, scriptwriting and fog

The worst part of chemotherapy for me is the total, bone-deep exhaustion, that just makes everything seem like such hard work that I end up doing virtually nothing, then constantly beat myself up about it. It's like being overwhelmed by a blanket of thick fog, and to then try and reach out beyond the fog is like climbing Everest, backwards, in ballet shoes, but harder. Staring into the mid-distance is about all I'm good for at the moment, which is incredibly frustrating, when there are so many things just not getting done. 

Never mind, I do have breast cancer, and that means people are generally  ever so forgiving. Hopefully it won't always be like this, but all I want to do all day is crawl back into bed, but don't, mostly for two reasons. Firstly I just don't have the energy to make the go-back-to-bed decision, and secondly, when I do managed to get back under the duvet, all I do is worry about everything that isn't getting done.

I really shouldn't be moaning about the chemotherapy side efffects, because the side effects of not having chemotherapy are a great deal worse, with death being one of them. It's the cancer treatment, rather than the cancer itself that makes you feel like pants. If I have all this treatment and still end up popping my clogs, I have totally promised myself that I will come back and  haunt whoever is was who invented chemotherapy. They won't be the only ones..... I can have a lot of fun compiling my "people I intend to haunt" list. Please let me know if there's anyone you'd like me to add to the list.

Last night I watched a TV programme which really made my list grow longer - all brand new, young junior doctors. They were all probably lovely, well meaning lads and lasses, with their hearts in the right places, but their arrogance and their ability to patronise were just staggeringly shocking. The documentary, following 8 doctors in their first week out of medical school did seem to focus on a particular sore-point of my own, putting canulas in and taking blood out, but their lack of understanding, patience and compassion was quite simply apppalling. Their priorities seemed to be more about making their mark and earning the respect of their new colleagues than really beginning to understand how their patients felt. There were moments when I wanted to shout at the telly, advocating for the poor patients being used as practice guinea pigs by these youngsters who really didn't know what they were doing yet. One poor old lady who was just at the end of her tether at being used like a pincushion, refused any more. She was later referred to as being "difficult and princessy", which really made me quite cross. 

I have to say that , almost without exception, all the doctors I've met in the cancer unit I attend have been incredibly sympathetic about my needle phobia, so I think I'm very lucky indeed. I wonder what they really say to each other, and in my case, I'm sure some of them might be tempted to use significantly stronger adjectives than "difficult and princessy". Unless of course it was Mr Lovely, who I'm sure, wouldn't ever say anything negative about anybody. 

Despite the tiredness, I have got a couple of rather exciting projects on the go at the moment, one, of course, being to do lots of thinking about how to turn this blog into a play script, because a dramatized version will be performed next May at the Brighton  Fringe. In my mind there is only one casting option with enough charm and warmth to portray the lovely Mr Lovely, but I doubt we could afford George Clooney.

The other exciting project got off the ground only yesterday. Our local Mencap organisation needs to raise £20,000 for a new sensory room. Mencap is an amazing place, offering fabulous opportunities to local learning disabled children and adults. My very learning disabled son, Toby, has been a regular there since he was only 5 years old, and I can truly say that it is probably his favourite place on the planet. The whole ethos just centres around fun and nothing is too much trouble for them if it means raising yet another smile or giggle from some of our most vulnerable people.

Although National Mencap is a high-profile and very respected charity, each of the local branches are independent, separate, stand-alone charities, responsible entirely for their own fund-raising. They just don't have the clout or the appeal of other charities, and sadly, not everyone can identify with learning disability in the same way they can with many other charities, so donations don't exactly come in thick and fast. 

Just a few weeks before I was diagnosed with breast cancer, I trained as a Laughter Yoga Leader, so I haven't been able to really focus on building up a laughter business. I do sessions at home for friends and family on an informal basis, but as far as organising venues and running regular classes goes, there just hasn't been the energy to even think that far ahead. 

Yesterday I met with two of the local Mencap managers, and offered to run a series of Laughter Yoga sessions on their premises with all the proceeds going to the sensory room appeal. There was so much good will and enthusiasm, and we have a taster already booked for next month, carefully timed around my best chemo days, with a full programme of sessions to run straight after Christmas. I am so excited! It is so nice to still get on with other things that don't have "I have cancer" running right through the middle, and it will be brilliant to be able to contribute to an organisation that have really supported my family over the years. They are doing all the publicity and organising the room, all I have to do is turn up and run a session. We also talked about me running sessions with their learning disabled clients, which could be so rewarding, and maybe even working with local care homes. As a really thoughtful gesture, their Fundraising Manager has even offered to help me get started properly once I'm finished with treatment and the time is right. Will that ever happen??! Of course it will!

We'll be asking for small donations of between £3.00 and £5.00 for each session, so if you think you'd like to contribute something but can't make the sessions themselves, even a few pennies would help tremendously.  Here's a link to their "Just Giving" page:

   http://www.justgiving.com/suttonmencap

So with scriptwriting and laughtering, at least I won't have too much time to dwell on boring stuff like having cancer. Cancer does get very boring indeed and it does seem to go on for flipping ever. It's OK though, because right now I just don't have enough energy for too much excitement, so boring sort of suits me right down to the ground.





Friday, 19 October 2012

Adventures with breast cancer: Handbags, happiness, girls and cars

Adventures with breast cancer: Handbags, happiness, girls and cars: Yesterday, when I posted the episode called "Eating Toast and Crossing Fingers", the techno gremlins got in the way of uploading the photos ...

Handbags, happiness, girls and cars

Yesterday, when I posted the episode called "Eating Toast and Crossing Fingers", the techno gremlins got in the way of uploading the photos I wanted to include. OK, maybe it wasn't the gremlins, maybe it was me, chemo-brain yesterday made even joined up thinking beyond impossible. 

 So, here they are now

My new bargain handbag bought during chemo at the hospital on Monday.


It might not be the prettiest handbag in the world, but it must be the biggest, and will come in very useful when I want to crawl inside it and hide instead of having my next chemo.


The Laughter Yoga girls, Lotte, Heidi, Carolina, Jo, Heather and Ruth, in the Alan Titchmarsh Green Room filming the Happiness show to be broadcast on 8th November
 So I wasn't well enough to join them in the end, but I was definitely there in spirit. I just think this is a really happy photo of the team.

Something else that's really made my week this week is that my blog has been posted on a really lovely website in the States. I wondered why the readership had suddenly exploded Stateside last week, and then I had a really warm message from Charlene Bowers, who runs Bowers Motorsports. Charlene has decided to devote her website to Breast Cancer Awareness month, and she has really researched the subject very well, so that her website has a lot of very useful information about Breast Cancer, and some really helpful links for more information. Every day, she has a different breast cancer story, and I'm the 11th October feature. It's very reassuring to know that there are people out there who care enough to bang the drum for all of us who are dealing with this wretched disease, and if you get a chance, please have a look at her site - in between the narrative are loads of amazing photos of bright pink cars to die for! Here's the link :-
 http://bowermedia.com/2012/10/a-month-of-pink/

Thursday, 18 October 2012

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...

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 perfect distraction to take my mind off what may, unfortunately, happen next. Finally, yesterday, on the third day of the third chemo, the sickness kicked in, big time. At least I don't feel like  a chemo fraud anymore, but I really wish the fairness fairy was back on duty this week - how does it happen that I eat nothing, feel like death warmed up, and still manage to put on a couple of pounds? 

I was dreading going back for more chemo on Monday. I know that it's good for me, I'm incredibly lucky to be able to benefit from the very best of cutting-edge medicine, and that it may well significantly prolong my life, but on Monday morning I felt more like a stroppy teenager than a willing participant about it all. You just have to go there, let them do what they have to do, go with the flow and deal with the consequences. I do know that, and I did all of that, but I really would have rather been anywhere else.

The day is long and tedious, and on Monday it felt like the tears were never far away,  but it was also peppered with a couple of really good moments too.  A cancer charity had a little sale going on in the canteen, and someone had donated a brand new, soft, black leather handbag, almost large enough to hide in, at a bargain price of a tenner, so I really had to buy it, didn't I.

The other thing that was lovely was that, once again, I was overwhelmed by the sympathetic understanding of one of the doctors. A tiny, very pretty young doctor who really doesn't look like she should be out of school yet, listened as I explained why I am so apprehensive about the forthcoming Muga scan, essential to check that the chemo isn't causing me any damage to my heart, but involves two separate injections, and they can't use the portacath. She just seemed to realise how big a deal my needle phobia is to me, and is arranging for me to go to another hospital for an Echo scan instead, where they don't have to inject any dyes whatsoever. Her kindness in doing this just took away a whole extra layer of worry and dread, and immediately, everything just seemed that little bit brighter. 

This time round, I feel really ill again, and the weeps have hit me big time too, but even though I've had to cope with being sick as well, it's not as awful as the last time. I'm hanging on to the fact that I've been here before, and it will pass and get better, and I'm not letting myself get dragged back into that big, deep dark pit of hopelessness that completely flattened me a few weeks ago. 

I've even read a book - the first book I've managed to read since diagnosis. I'm an avid reader normally, and can't put a book down once I've lost myself in it. My kids have often wandered around saying "We're orphaned, mum's reading", and they haven't been far wrong - once totally absorbed in a really good story I simply wouldn't notice if the house was on fire or my kids were starving. Since I've had cancer, I just haven't had the concentration or energy to work my way through a whole book just for fun. However, this book wasn't much fun. It was the book Gloria Hunniford wrote when her daughter, Caron Keating, died of breast cancer. Caron had walked away from conventional treatments, choosing to pursue alternative cures, and some of them were very alternative indeed. I was very sad for her, and quite angry that so many charlatans were virtually queuing up to make money out of a very vulnerable young woman.  There is a huge difference between "alternative" and "complimentary", things you can do instead of, or as well as receiving the very best that modern medicine can offer. An hour or two on the internet will bring up all sorts of other treatments, some of which sound plausible, others sound just plain whacky. There are all sorts of stories of people who were totally cured by "thinking" their cancer away or whatever, but there is very little hard scientific evidence to back up many of these claims. I can't work out if following different non-medical paths is courageous or cowardly, and is probably an amalgam of both. To do it properly, and really immerse yourself totally in it probably costs a lot more than I can afford, and you have to wonder if Steve Jobs or Robin Gibbs had had less money and fewer choices, would they have had to go down the conventional route, and still be alive as a result?  Anyhow, this whole subject has stretched the old grey matter a bit, and that can't be a bad thing. 

I nearly had a chance to be on National TV yesterday, but it fell through in the end for me, but the idea of it was very exciting all over the weekend. The Alan Titchmarsh Programme is doing a show all about "Happiness" on the 8th November, and they wanted some Laughter Yoga Leaders to demonstrate some laughter techniques. If you get a chance, please watch it, because 6 of my Laughter Leader friends and colleagues are on it.  I qualified as a Laughter Yoga Leader a few weeks before diagnosis, so haven't really been able to get it going in a big way, but I do hold sessions every now and again for friends and family at my house. Laughing has some amazing health benefits, 10 minutes laughing is as good as 30 minutes on a rowing machine in terms of cardiovascular exercise. The Yoga part of the title is about the breathing -  the deep, long oxygen-rich breathing you get from a belly-laugh, so nobody has to put their ankles behind their necks. Laughing has "whole body" benefits too - regular laughing gets everything working well together  - your mind, body, spirit and emotions all get a real boost, and your body doesn't even notice whether it's because you are laughing for real or forcing laughter. Of course, in a group, what starts as forced laughter quickly dissolves into total hysterics for real, but if it doesn't people still get all the health benefits regardless. 

So on Sunday, we had a little laughter session at home, just so I could get some practice in, and for the first time we had some small children, both of whom have special needs. It was a really lovely session, and the children seemed to really enjoy it and benefit from it, to the point that I can't wait til I get another chance to work with some "special" kids in small groups with their parents.  So much to do, so many reasons to get better as soon as I can. 

Some people have asked if I mind if they pass this blog on to other friends, or via their Facebook page. Of course I don't mind, in fact I feel the more the merrier, although I never thought anyone was going to be interested in the minutae of my comings and goings! I am staggered that the readership continues to grow and grow, and that people are reading from all over the world, and even leaving lovely comments sometimes. Thank you. There is a facility to become a "follower" which means that you get an email to let you know whenever I've found the time to write a new post that you can use too, if you want to. 

Guess what? The toast is still down, and I even popped off halfway through to add a quarter of a Scotch Egg to the mix, so things are definitely looking up.


PS I took a great photo of my new handbag to put on here, but I've been having technical gremlins for over an hour, so maybe, next time!
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Thursday, 11 October 2012

Adventures with breast cancer: Truckloads of Life

Adventures with breast cancer: Truckloads of Life: Thank you for all the lovely and supportive feedback you've given me about last night's blog entry with all the photos - it really has b...

Truckloads of Life



Thank you for all the lovely and supportive feedback you've given me about last night's blog entry with all the photos - it really has been heart-warming and quite overwhelming. I've always been reluctant to use photos before because I'm no great classical beauty, and I'm normally the most unphotogenic person on the planet, but Anita did such an amazing job, that even I have to admit I almost look half decent in some of them. I'd forgotten that her father was a photographer, so she knows a lot of the tricks of the trade like lighting - we had the front door wide open and took them all in the hallway, kind of embarrassing with passers-by gawping and neighbours wondering, but hey ho. She also was very good at directing - normally when someone takes photos you just stand there with a silly self-conscious grin on your face until the shutter has decided to fall, but Anita was telling me do this, stand like that, put some attitude into it, etc etc, and a lot of the expressions I'm pulling are in response to her saying something hilarious off the cuff just as she was about to shoot. She even nearly injured me for life by fetching the widest chair I own, and getting me to do the classic "Christine Keeler" pose sitting on it backwards, but with clothes on. 

It hadn't occurred to me before, but now that I'm 5 months into the cancer treatment there may be a perception among people who either don't know me or who haven't seen me in ages that I probably look like a washed-out concentration camp victim by now, and of course, I don't, which is good, and in fact that wig does me far more favours than my natural hair ever did.
My big fear when all of this started was that I’d be stuck in bed too ill to do anything for month on end, and most of the time that isn’t the case. Sometimes I even forget I’ve got cancer completely.  My oomph and energy isn’t what is used to be, and it’s hard to be active for more than 15 minutes at a time, and concentration isn’t what I’d like it to be, but overall, it’s not too bad.

Life is never easy, and when you get something big happening as well,  it doesn't happen in isolation. The world still turns, the stresses still happen, and the house still needs cleaning, the clothes still need washing, the cooking needs to get done, and the constant, never-ending paperwork still just keeps cascading onto the doormat. Teenagers still forget to bring their washing and their plates downstairs a lot of the time, and just because their mother has cancer, doesn’t mean that the teenage years, with all the hormones, upsets and anger, are any less tricky. The same balls still need juggling and kept in the air at all times, but with a thick blanket of cancer over the top that just makes doing it all that little bit harder. Then the good stuff happens, too; birthdays, celebrations, lovely meals out and lovely meals in. With WM’s constant support for all of us, we are all somehow pulling together as a family and making it all work, but  sometimes it just needs a little bit more planning, patience and negotiating to make it happen.  

Cancer isn’t the only thing that makes life a bit more of a struggle. Life can just deliver a truckload of tough stuff to any of us, without a moment’s warning or a backward glance. One friend of mine was nearly killed a few days before my mastectomy, when she was hit on a pedestrian crossing by a motorbike and sustained a very serious head-injury. She is doing very well and coping amazingly well, and we’re all thrilled that she has certainly retained her wickedly sharp sense of humour, but full recovery will take a very long time, and meanwhile she’s still being an amazing mum to her three little boys. 

Yesterday, someone else I knew had to have an emergency operation spending two days away from her little boy, and still finding the resources to send me some lovely thoughts about my photos late last night. Another friend had both her teenage boys in separate serious accidents within days of each other - one nearly lost his fingers in a chainsaw, the other was in a bus when it crashed – so she has certainly had to deal with far more than her fair share of worry and stress, but no one would know because she still manages a laugh and a nice word for everyone. 

Life can be marvellous, but it sometimes seems like a relentless slog through treacle that's just miserable and flipping hard work. Things hit us from all directions when we're least expecting it. That's true whether you have cancer or not. 

Some people with cancer worry that they'll never be or feel the same again. I know I won't, but I'm pleased about that. I think that life is all about learning, developing, growing and understanding, and if we aren't altered by our experiences we'll never learn to dig deep and discover what amazing resilience and resources we actually have, what strength and coping skills we are developing with every new challenge.

Yes, OK, so I’m having a good chemo week, so the world does seem like a fairly nice place right now. This time next week, on day 4 of chemo 3, I doubt I'll feel as magnificently philosophical as I do now. I'll probably be miserable and grumpy, and feel as ill as if I'd been hit by a steam-roller, an articulated lorry and a passing train within minutes of each other. I’ll just have to remember to go with the flow, and sit it out until I’m feeling better – something that’s much easier to write down now than to actually do next week.

I think one of the secrets in all of this, which I'm still hundreds of miles away from perfecting, is the ability to separate your mind from what is happening to your body. Cancer treatment isn't always terrific fun, but to be able deal with the pain or the illness side of things without sinking into the pits emotionally too would be really helpful. I can do it sometimes, but I still fail dismally at other times, and always when they come at me with a needle. 

Mostly I think I'm doing OK, and coping with it all pretty well, Just like the amazing friends I have who are also grappling with the tough stuff at the moment. We'll all get through it and come out the other side as better, more resourceful people, even more ready to deal with the next passing truckload of life. 

PS I was just about to upload this, and my lovely daughter has just shown me the website for one of her favourite clothes shops and guess what? Turbans seem to be the height of fashion this winter – how lucky is that!

Wednesday, 10 October 2012

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. 
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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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