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.

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!