Coke Floats & Chemo: Being a cancer patient

Coke Floats & Chemo: Being a cancer patient: Today I was a patient, and I'm just not any good at it. I hate it, loathe it and although outwardly I'm good at giving the right imp...

Being a cancer patient

Today I was a patient, and I'm just not any good at it. I hate it, loathe it and although outwardly I'm good at giving the right impression of stoical gratitude and forebearance, inside I'm desperately trying to prevent my true feelings of stroppy petulance leaking out all over the place. 

Mostly I can deal with it, tune it out, get on with it and accept the whole package of being a patient with a lot more graciousness than I felt today, but sometimes, just sometimes, it really gets to me and I want to stop playing this game, this lottery game of fear and uncertainty called cancer. Then I remember that this is just the way it is, there won't ever be a way to get off this particular merry-go-round, and life is a bitch. 

I'm normally much better at tackling things than I am today, I don't normally do low, I don't usually let things get to me like this. It wasn't anyone's fault. The hospital staff were perfectly pleasant, in fact the Consultant I saw was completely lovely, and even gave me some really encouraging news. It was me. Today I struggled to do positive, happy and upbeat, I failed dismally at looking on the bright side or finding something absurd about the whole thing to laugh at, I just didn't do the whole patient thing well at all. 

It was a test day rather than a treatment day. I was with the clinician who conducted the test for nearly an hour, in very close, bodily contact as they have to dig deeply into my flesh with a probe and drag it to various points, each time digging harder until I wanted to scream with the pain. Maybe I'm just a wuss. I was never told her name, even though she knew mine. I had to undress, and she couldn't find the surgical gowns to at least give a pretence to modesty and dignity. I was half-naked, revealing the ugly disfiguring shark-bite scar where a breast used to be, while she rummaged in cupboards looking for the missing gowns. That hideous twelve-inch scar that scooped all the flesh out right down to the breastbone and rib-cage that even now, nearly two years after surgery, I can't face in the mirror without dissolving into flood of tears. 

Eventually I was handed a gown, but by then it was too late, I would have to spend the next nearly-an-hour swallowing hard to stop those wretched tears from revealing my true vulnerability. I had to lie, stock-still, on the bed, all the time trying to tune out the joint pain that wanted to tear me apart. Hips, knees, back, elbows, wrists, knuckles, they all wanted a pain party today. My surgery has left a legacy of gnawing pins and needles and numbness in both arms and fingers, which was made worse by the permanent nerve damage caused by chemotherapy. Lying still for what seems like forever means the pins and needles fizzle away like crazy until it feels I'm on fire. I began to think I would never be able to move again.  Maybe I've just got a low pain threshold. 

Every now and again, I was asked to take in a slow deep breath and hold it. It would be so helpful if clinicians would remember to tell you when it's OK to breathe out again, but they often forget. Today I thought I was going to suffocate several times over. There were curtains around the bed, but they didn't quite meet in the middle, and directly opposite there were staff lockers, and it must have been staff break time, with me and my scar providing the peep-show entertainment. 

Normally, I manage to keep a perspective on things, normally I just remind myself how lucky and blessed I am to live in a country with free health-care, and at a time when the treatments on offer will keep me alive for longer than has ever been possible before. Not today. Today I was pissed-off, resentful, miserable and withdrawn. 

Being a patient is so much more than just turning up and letting them do whatever has to be done in terms of tests and treatments. The psychology is complex, and there is a whole set of assumptions and expectations that you feel compelled to conform to, even when you really don't want to. I'm a patient, therefore I'm expected to be weak, passive, willing to co-operate, grateful, gracious and submissive. As a patient it's really hard to hold on to your identity, personality, dignity and privacy. It feels like I'm reduced to a hospital number who has to be processed. It really doesn't matter how kind, compassionate, caring and sensitive the staff are, it's almost impossible to be "me" when I'm with them. 

It's the same in the outside world. Having cancer, particularly the incurable variety that I've got, inevitably sets you apart from everyone else. It's so easy to become defined by cancer, to let who you really are to be squashed and crushed by other people's reactions. I've spent the past nearly two years fighting against these stereotypes, and I've done it fairly successfully so that people know that the "me" is still alive and kicking and living life to the fullest. 

I've kept a blog, starred in the Stage Play of my cancer story, written a book, spoken at conferences, run Laughter Yoga sessions, and kept countless other interests and activities going strong, all at least partly so I remain much more than just a person with cancer. People sometimes tell me I'm marvellous, inspiring, courageous and brave, but I so am not any of those things. I just don't want to be written off, side-lined, ignored, depersonalised or reduced to a pathetic shadow of a person. I want to be engaged, dancing, laughing, involved, enmeshed in life, because that way, I'll stay alive in the only way that matters. I don't want half a life, I don't want to be passive and poorly and get smothered in sympathy. I want to be me.

Sometimes, just sometimes, the facade drops and I'm left exposed, so exposed that even I have to see what's really going on. I have cancer. It's incurable. Hospital tests and treatments are now, and will always be an integral part of my lifestyle until the day I die. 

Cancer has robbed me of energy, cancer brings me low when I look at the To Do list and the dozens of little tasks that have been left undone around the house for months, and the admin mountain and the washing and the keeping the kitchen and bathroom clean, and I know I just can't do it all any more. The exhaustion. The bone-tiredness that descends like a cloud and I fight it like hell. The running on empty. Cancer has taken so much and will continue to want more and more. I will not let it take away the "me" though. I will not be crushed under the weight of this awful disease.

I will not be patient, even though I have to learn to be a patient. I doubt I'll ever be a good one though.

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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Pulling my hair out

The hair has to go, and very quickly. The Lovely Mr Lovely has sent me a copy of a letter he has sent to my equally lovely Chemo guru, suggesting that, since I seemed to have very little in the way of post-chemotherapy symtoms, perhaps I was under-dosed. Everyone I've told about this seems to think it's hilariously funny, but I really don't want a double dose next week, so I need to be a bald as a coot to prove that my little cancer cells have been sufficiently ravaged by it. 

So, everyone at home is completely grossed out by my new addictive habit of tugging handfuls of hair out. Personally, I find it fascinating, it's just so wierd to run my hands through my hair and loads of it coming away. This has been going on now for two whole days, and despite the fact that I feel like I've pulled away enough to stuff a couple of cushions, I actually still look like I have a whole head of perfectly copious hair. I have to wear a hat when I go out now, just in case it all suddenly decides to go out, and my kids won't let me cook their food at the moment in case I moult all over their dinner. So poor WM is on chef duty in our kitchen this week, which beautifully lets me off the hook.  

Losing your hair is supposed to be one of the most traumatic parts of having cancer, so I've surprised even myself by how much I'm enjoying it so far. But that's the funny thing about this disease - things you think will hit you hard just don't, and things you think you'll take totally in your stride can send you over the edge into a dark black pit of misery. Both can happen too; maybe in a day or two I'll find the whole bald number heartbreaking, but I'm nowhere near there yet. 

I heard a theory about cancer patients this week, that they fall into two distinct catergories, the Tiggers and the Eeyores. I think I'm mostly Tigger with the odd moment when Eeyore pops his head up and overwhelms me with misery, but luckily that doesn't happen often, and when it does, it doesn't last very long. 

This last week, the misery has mostly been miles away. It's been a lovely week, I've had absolutely no hospital or any other appointments, I've felt reasonably well - certainly well enough to go out to dinner three times and to engage in a touch of retail therapy too. I've even driven the car for only the second time in three months, and the mastectomy scar is sufficiently healed to tolerate a seat belt. I've experimented with new underwear and I've found a bra make that holds the falsie in place so securely and in the right place that I almost forget that it's not my own one. 
WM let me help him choose a new car, I've spent stacks of time just chilling with all three of the children, catching up with friends, and just feeling relatively normal for the first time since early May. Downton Abbey's return is just the icing on this week's cake.

I wish I could shift the procrastination though. The to do list gets longer and longer with each passing day, and the house gets more and more untidy and dirty. I have energy galore for about 10 minutes in a burst, then I just flop. The admin and paperwork is now more of a mountain range than a single mountain, and if I'm not careful something that I really should have done but haven't is going to turn round and bite me on the bum very soon. I get to the stage where I don't even know where to start, and the starting is scary, because once I explore that pile I'll find all sorts of reasons to be consumed in guilt, and feel pants for the rest of the week. 

Going back to chemo symptoms, I now don't think I got away completely scot-free. The first 10 days I was comprehensively washed out, and although the consuming gallons of water and fasting beforehand did the trick in terms of  stopping me feeling sick, even walking from the kitchen to the front room seemed like a marathon. Eating is another marathon, I just don't register hunger, and the weight is falling off, not quite as quickly as the hair, but still pretty good. As well as the hair disappearing, my mouth feels like someone's taken sandpaper and razor blades to it, nothing tastes right, even my staple, my precious cups of tea, taste like the milk went off last year. The chest pain that arrived a few days after chemo hasn't subsided yet, and in a bad moment, despite the medical reassurance I've had, I convince myself that it's the cancer spreading. Hopefully it's just a little know rare side-effect, but I really wish it would bog-off somewhere else.

Somehow I've got to find the wherewithall to sort out the paperwork and the house. I bought myself a new present which arrived today, a Dyson vacuum cleaner. It's still in its box in the hallway, hopefully giving the impression to any new visitors that, OK, the house is a tip, but I'm just about to sort it out. We all have special talents, and mine definitely isn't housework, but once I get going with the Dyson, I'm hopefully going to be galvinised into action, if for no other reason than to clear up all my fallen hair. Otherwise my kids will never eat at home again. 

My GP has summoned me to see him later this week, and I haven't a clue why, but something about wanting to talk about my current hospital treatment. Hopefully they haven't decided that my family has single-handedly bankrupted the NHS and I'm never to darken their doorstep again, but I'll let you know. I'm due to see their new trainee GP, who the receptionist enigmatically told me "He's very popular with the ladies". Maybe another Mr Lovely in the making? I'll let you know about that too. 

I've got a few more days before Chemo episode 2 next week, so there's time to fit a lot of stuff in. Paperwork and cleaning, obviously, but also maybe a few good books and a some quiet nights in watching TV. Feeling fairly well, apart from this constant chest pain,  is such a strange, but lovely, experience after all these months of feeling pants, that I've almost forgotten how to relax and enjoy. I'm sure, with a bit of practice, I'll get very good at it again soon. And if I don't, then I'll obviously need to practice it even more.





 













 

Food glorious food

Finally, I'm beginning to take on board that I am actually quite seriously ill, and that I need to start behaving accordingly. Don't worry, I've no intentions of dragging a poor, pathetically limp barefoot body around the place wailing woe-ridden self-pitying nonsense, more that I probably need to slow down a bit, take stock and accept that I can't actually attempt to change the world on every single day. 

Two days away at the Penny Brohn Cancer Care Centre on their Living Well with Cancer course has done me the power of good. They used to be known as the Bristol Cancer Care Centre, and they are world famous for their "Bristol Approach" philosophy. WM and I had a glorious time! Think 5-star hotel accommodation coupled with getting the type of welcome and care you'd get from your very best and oldest friends. Add in the most amazing 4 acres of gardens and fabulously delicious food, and although it was only two days, it gave me the chance to step back and take stock of where I am, what is happening, and how I can get through it all. 

They take a "whole body" approach to cancer, working alongside the very best of what we are offered by our Oncology Teams, their focus is on keeping the mind, body, spirit and emotions healthy and balanced. The two days were jam-packed with workshops and talks on everything from nutrition to meditation, exercise classes to getting lots of rest, and it was quite intensive, but this meant it had quite an impact on me to. 

There were nine of us on the two day course, 6 with cancer, and three "supporters" including WM. It really bought it home to me how arbitary and random and unexpectedly this disease strikes. All of us were just bumbling along, minding our own business and living our lives when BOOM we get cancer completely out of the blue. Everything from that moment changes, with hospital appointments, treatments and procedures taking over every aspect of one's existence, and dealing with post-operative pain, mulitation, self-confidence and self-esteem issues, drug-related side-effects, hair loss, radiotherapy burns, the list goes on and on and on. 

It's very easy to go over the edge into depression and despair - not only about the fact that this cancer may actually kill you very prematurely, but also just because dealing with all the brutal but highly-effective treatments can be very traumatising, painful, and almost unbearably dehumanising. Privacy goes out the window, as does any sense of being in the driving seat of your own life, and how you live it. Cancer and it's treatments create people who feel broken and frightenend and lost, and the Penny Brohn Centre is there to give people back a sense of control and ownership of their ability to get better.

I was quite apprehensive about going, but now I'd really recommend it to anyone. Watching the change in other people too was really uplifting - some arrived in despair and left with real hope. I had done a lot of reading around the topics of complementary cancer therapies, and they all made a lot of sense, but trying to fit them into an already over-busy life just seemed one step too hard, and also packed me full of a load of unnecessary guilt too that I wasn't implementing everything. The Bristol approach is much more realisitic - make one small change every now and again and really work at it, rather than set yourself up to fail by trying to making too many radical unrealistic changes all at once that you'll never be able to manage.

I learnt as much from the others on the course as I learnt from the Centre too. How to deal with hair-loss, how to maximise the effects of chemotherapy, where to buy the best underwear for mastectomy prosthesis - even how to feel more positive about my horrible mastectomy scar - someone asked me how long my "shark bite" was, and I just found that really funny. So I'm now calling it my Shark Bite, which makes me feel like a proud, brave survivor instead of someone who has been just been hideously mutilated. I hope to keep in touch with everyone online and through facebook, and yesterday a lovely parcel arrived for me from on of these new friends - lots of beautiful headscarves and hats to wear for when my hair fall out, probably in a month or so from now.

I also lost 4 whole pounds from all their healthy eating. Not a biscuit or any sugar in sight. This is the part of the two days that I am really trying to continue at home - so far I have already baked a rice-flour loaf of bread, made my own houmous to spread on it, created a rather strange, but OK, salad dressing, and we've eaten more salad in the last couple of days that we've had in the previous two years. There is so much evidence about diet and banishing cancer, and how cutting back on additives and eating mostly plant-based foods creates a physiological environment that cancer really struggles to survive in. 

I've also bought myself an exercise bike. Gone are the days when those of us who are seriously ill are allowed to lie and bed and look wan and romantically weak, oh no, now you are expected to exercise yourself back to fitness. But a girl has to do what a girl has to do. I'll be a stick insect by the end of the week with a Jessica Ennis stomach. 

The one big change is that I have finally realised that I am seriously ill, and that the rules and the goalposts have to change accordingly.  Normally every morning I get up and make a "To Do" list, and race through the day beating myself up for everything I haven't managed to tick off the list, either because I was over-ambitious, or because procrastination set in. I have finally accepted that I am  much more important than the house and the housework, so although of course there will be a bit of that on the list every day, there will also be loads of things like rest, read, watch TV and enjoy being alive, too.

I've got a whole week before the chemo starts, and the steroids and the hairloss and the sickness and the muscle weakness and the mouth ulcers and the lack of tastebuds and the weight-gain and the total wipeout exhaustion that that is supposed to bring. Everyone who sees me is amazed how well and "normal" I look, some have confided that they were really apprehensive to stop by expecting to find me looking really weak and ill. Between now and Christmas I'll probably look terrible and feel even worse, but that's what's got to happen to get better, and to poison any little cancer cells still wanting to party inside me means that I'll have to cope with some of that poison too. It's not going to be easy, but anything that is really worth having very rarely is, and at least I won't have to deal with many "bad hair days" in the next few months because I won't have any to worry about. Bring it on, let it happen, and I can't wait til I'm through it all and out dancing on the other side.