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...


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...


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.