The Paradox of the End

It’s the 28^th October 2014 – last day of radiotherapy, last day of treatment. I’m sitting in the little flat in Brighton overlooking the ocean wondering how to write this blog post. It’s not an easy one. For the last few days I’ve been getting phone calls, texts, emails… of joy, excitement, congratulations that I’m ‘at the end’. Somehow I don’t share these feelings though, even though I appreciate the love and support, as ever, and even though I’m relieved in many respects to be at the end of treatment…

I had my final appointment with my oncologist yesterday. When I say final appointment I mean the final one that I’ll have during treatment. I’ll continue to see him for ‘check-ins’ when appropriate. I say check-ins as opposed to check-ups because I found out yesterday that as far as he’s concerned I’m cured. He said he can’t absolutely guarantee that but he has now put me in the cured box unless anything in the future indicates otherwise. Obviously this is good news. The hard part is that there’s nothing that they can do to ‘check-up’ on me over the coming months or years. Having had the bi-lateral mastectomy there’s no chance of tumours recurring the breasts – obviously… they’re gone. Then, checking the rest of the body for any spread through full body scans is not what they routinely do, unless something abnormal was to show its face. This, I found a difficult concept to get my head around and it triggered off every difficult feeling I have about coming to the end of treatment. I’ve read about how ‘the end’ is often an anti-climax and can be very hard for patients but hadn’t, before now, had the experience of it.

Those few that have been around me have seen how hard treatment has been, especially surgery and chemotherapy. And those of you that have been keeping in touch via my blog or other means have probably also seen or felt the intensity of the process. This I cannot deny. There’s something rather weird that surfaced yesterday though about the safety in treatment. However tough it is (and don’t let me undermine that) I didn’t realise there is also comfort in it. There’s no chance really (as far as I understand) that cancer can grow during it (chemotherapy). So now I find myself being ‘let off the leash’ and into the unknown – no treatment, no proper check-ups, just me.

There’s an interesting paradox in it all, which I wouldn’t have guessed before recent days. Someone said a couple of days ago how nice it will be for me not going in to hospital for an appointment every five minutes. Of course that’s true. Without a doubt I wouldn’t wish to continue with all of that. Hospitals, journeys to and from the hospitals, appointments and treatments are grim. But… in many respects you’re in someone else’s hands. I’m now in my own hands again and that responsibility seems hard.

I guess the hard part is the mind. It seems obsessed with the negative. I’ve been told that I’m now in the ‘cured box’ as far as my oncologist in concerned but the fact that that can’t be guaranteed, or checked, is what mind wraps itself around and gives me grief about. It’s not even vaguely compelled by the fact that I’m likely to be cured – what a blessing.

So… the onward journey is about learning the stay afloat in the ocean of fear that the mind presents. They say in the yogic teachings that by looking at the fear face-on, not pretending that it’s not there, is what gets you through it. A bit like when you put a fist of pressure on a knot in your back – it has no choice but to release eventually. Being scared of the return of the cancer is something that I must now live with, but the gift in that is that I get the opportunity  to learn to overcome it. Imagine life, when fear doesn’t get in the way! There’d be no stopping me. And that’s what I strive for. It is my hope, my sincere hope, that I learn to understand the patterns of fear, and see it each time it arises, before I sink into it. It’s a game I will play with my own mind and it is that which will determine the quality of my life from now on in.

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I guess on that note I draw (at least, this part of) my blog to a close. Maybe I’ll continue to use this space as a means to communicate my onward journey. Maybe I won’t. But ultimately, here’s hoping…praying… that this space, if and when used, is used through growing health. I want to thank you all for the support and love that you’ve given me so far on this journey. I’m ridiculously blessed to have you all by my side. Love love xxx 

Radiotherapy Begins

3 radiotherapy sessions down, 12 to go…

So far it’s all ok…

I’m not going to write much now because my arm is playing up a bit but just wanted to fill you in briefly.

It was so completely amazing starting to feel well again before radiotherapy started. I had four weeks in between my last chemo and the start of radiotherapy, so the fourth week was really quite a treat. Every time I had a conversation with someone where I could put a bit of energy into what I was saying or when I walked somewhere with a bit of pace or for a sustained amount of time, it felt incredible beyond belief. I never want to take that for granted again – how amazing energy is, how amazing it is to have the life force within us to talk, to walk, to think…

We moved down to Brighton on Tuesday to a gorgeous flat we’re being leant on the sea front. Radiotherapy then began on Wednesday. Funnily enough, when we moved to Brighton it felt like we were going on holiday. Even though it’s for  radiotherapy the change of scenery is still a treat.

I’m not feeling massively motivated to go out and about. I’m still feeling quite internalised. But I did venture out last night (for the first time in as long as I can remember) for dinner and to the opening night of the Brighton Comedy Festival. I’m not an easy one to get laughing out loud with stand up but there was quite a lot of good ol’ belly laughing that went on last night, so that felt good… so I’ve had a good intake of laughter medicine and it was exciting being out and about.

I’m back at the cottage for the weekend now and then back to Brighton on Monday to continue with treatment. I’ll keep you posted on how it goes…xxx

Break before Radiotherapy

So…I’ve made it through chemotherapy. I can’t actually believe that it’s all over. Here’s hoping… praying… that I never have to go through that again. After the last infusion, I’m out of the chemo tunnel and starting to build myself back up again, which I’ve got 2 more weeks to continuing doing before radiotherapy starts. They don’t give you a huge amount of time to get yourself together before the next treatment. There’s were days recently when I couldn’t quite believe that I still have 3 weeks of treatment to get through, but as I start to get stronger I have more of a feeling of strength moving into this next phase.

I know it’s not going to be easy but I’ve got a feeling that it won’t be as tough as chemotherapy. Apparently, radiotherapy on its own doesn’t come with a huge amount of known side effects. It’s more the cumulative effect of surgery, then chemo and now radiotherapy that is tough on the body. Tiredness and skin soreness are the main side effects from radiotherapy itself. You can get extreme exhaustion, but as with everything, it depends on the person, and I’ve had that already with chemo already, so if it comes, I’ve just got to go with it, like with everything else.

So we’ll be in Brighton for the 3 weeks of treatment, in October (we’ve sorted a place to stay…whoop whoop!). Although I’ve got to go through radiotherapy, in some respects I’m quite looking forward to being in Brighton. It means a change of scenery for that time, which I feel I really need. (Plus, the Brighton Comedy Festival is on, so if I’m not feeling too whacked from radiotherapy I might be able to go and have a giggle for a bit). For much of chemotherapy I’ve been cooped up at our cottage. However beautiful our place is, too much of it, especially during testing times, has been hard going.

It’s funny how I can’t stop thinking about ‘what next’. Well, not funny really, probably quite natural. Having spent the last year ‘being ill’ all I can think about is how I’m going to spend my time when I’m better. The trouble is, there’s no way of knowing how long it will take me to recover from all of this, so the truth is, it’s pretty pointless planning anything at this stage. That doesn’t seem to stop my mind getting busy and making attempts to make grand plans. It’s just going to take a period of patience though, being kind to myself and allowing myself that time to heal. It’ll be interesting, when my energy starts to return, trying to strike that balance between finding things to get involved in but not overdoing it either… and not getting frustrated in the process. Anyway, we’ll see… All will be revealed.

Final push

It’s the day before my last chemotherapy and spirits seem to be up again. I managed to get through that wee low patch...I may well have another before this all draws to an end (quite likely I guess), but what I’m learning through all of this is to try to be ok, however hard that is, with whatever comes. Trying, with all the energy that I have, to stay present with what is, in each and every moment. As I think I’ve said before, the problems always always seem way worse when I look ahead and feel that fear, or look back and feel the pain of what was. Sometimes it feels close to impossible but in fact the concept is very simple - for this last bit (and I guess it’s a lesson for forever more as well) the real test is to stay in the now.

I can’t say I’m looking forward to doing this again but I know if I can stay present with every moment (or with as many moments as I possibly can) the next couple of weeks will be the most manageable they possibly can be.

My main distraction during the hardest times, or when I’m in pain, (as I said in another blog - I know this is a bit of shock to those that know my film watching habits (or lack of them)) is watching films. Sometimes one after the other, just to take my mind of things. So, if anyone’s got any film recommendations or ability to lend me any (comedy of some sort, although I’m not so into slapstick) - laughing seems to be my medicine much of the time - that would be gratefully received.

My other favour to ask you all is if anyone knows of any places that might be available in Brighton in October. I’ve got radiotherapy Monday to Friday, every day, for 3 weeks starting on Wed 8th Oct until Tues 28th Oct - and the commute from Wadhurst every day there and back is too long. Any thoughts/ideas would, again, be gratefully received.

So...this is indeed the final push, for the chemotherapy at least. Then after radiotherapy the focus will be on getting back to health - in body, and in mind. I’ve noticed my confidence and self-esteem have dropped quite a lot through this process. I think that’s largely to do with the drastic changes I have undergone in my appearance. I feel like physical layers have been stripped back and I’m not being left with a huge amount here...externally at least. I’m being told otherwise by the people around me but it’s a very real feeling in my world nonetheless. Many of the features that I thought defined who I am are no longer there.

Obviously the surgery has left me with permanent changes and the chemotherapy more with temporary changes (I’m talking on the level of appearance here). Either way, it is forcing me more and more into a journey of trying (again, it feels very difficult, if not close to impossible) to find, and focus on, an inner beauty instead. Not an easy lesson, but one i have had no choice but to try and embrace.

We know that the physical is a constantly changing thing so I know it’s a good lesson to have because changes are going to happen whether we like it or not. We can’t always have the same physical appearance as we go through life. I guess it’s just that some people go through changes faster, and more dramatically, than others. Sometimes that’s hard for me to get my head around, and I feel rather affected by the changes that I have gone through, and am still going through. On the other hand, however, I know that with a little bit of hard work I do have it in me to work through it. It’s just going to take some time, effort and awareness.

Ok, I’ll leave it there for now, as I sit here munching on my new favourite ice cream – it’s AMAZING for anyone that’s interested and the name is bizarrely fitting, not to mention that it fits all my dietary requirements – ‘Boojah-Boojah’ Hunky Puncky Chocolate ice cream – dairy free, gluten free, sugar free AND YUUUUMMY! Sending you all heap loads of love and, as ever, I’ll post when I re-emerge from the sixth and final chemo tunnel. Booyah de booyah xxx

A quick check-in

Articulating how I’m feeling at this stage in the process isn’t easy. A big part of me doesn’t want to communicate at all then the other part of me knows that it’s important, if nothing else, to let you all know that I’m doing ok. As ever, I very much appreciate the emails, phone calls, strength and love coming my way. All of that feels like a very important part of me being able to keep gathering the strength to get through this. I’m sorry to everyone that has attempted to call, who has asked to chat or who has wanted to come and visit – from my closest friends and family to all those wonderful people that I haven’t been in touch with for a while. I’m just keeping my head down and focusing on getting through this... which, as you know, is no easy task. Some people like to do this kind of thing surrounded by people but as most of you can probably see I prefer to just get on with it and do it quietly. I know that that’s not easy for some of you who would prefer that I was in touch but I guess that was the reason I have this blog – to communicate a little bit of my process even though I’m not seeing most people face-to-face.

The last chemo was better than the previous one. I didn’t have any reaction whilst I was being given the infusion and I haven’t been in hospital (yet!) this cycle so things are looking good. I’m taking longer to recover each cycle, which is a real challenge and the truth is it’s hard not to get low but I’m managing to keep afloat and that’s the most important thing. Only one more cycle to go (on the 10^th Sept), a 4 or 5 week break after that and then radiotherapy.

That’s about all for now – just wanted to let you know I’m still pushing on through…big love x

Onwards

I’m not quite sure how but somehow Round 5 is already upon me. Unfortunately, during the first 10 days after chemo, much of the time I’m praying for the days to end, just trying to breathe through challenging moment after challenging moment. Then those tough 10 days or so come to an end and I start to enjoy myself again then time just flies by and before I know it it’s the weekend before the Wednesday’s chemo once again. It’s great, on the one hand, that time is passing quickly because the light at the end of the tunnel feels more within reach, but it’s hard that the next chemo round is always upon me when I’ve only had a wee taster of what it’s like to feel vaguely normal again.

This weekend that’s just passed though was totally lovely. It’s been Hazey’s birthday and we went camping for the weekend. Well, I say “we” went camping. I didn’t. As the weekend approached I got quite a strong feeling that now wasn’t the time to be taking any risks with getting too cold or dirty, or anything like that. With the amount that I’ve been in hospital it’s pretty obvious that my body hasn’t got much, if anything, to protect itself at the moment. So I joined in with the happy campers and all the camping activity – bonfires, barbeques, hanging out at the campsite etc etc – and then went to the B&B at the other end of the campsite to sleep.

The challenge with going away at the moment is that I need to always be fairly close to the hospital in case I get a temperature so it was great going away somewhere that was only about half an hour away. And better still, I got to hang out with my nieces and nephews, even though most of the time it was at a distance because of coughs, colds and bugs that were flying round. It was such a lovely weekend and so nice to have ‘had a break’ – whatever that means… I think it just means having had a change of scenery. Kind of important when I’m home bound much of the time.

So… this is my fifth chemotherapy coming up, out the 6 in total. It sounds like it’s near the end…and it is, but as I think I’ve said before, it still feels like a hard slog to the end. It’s by no means over yet.

I had a PICC line “installed” into my arm a week or so ago, which makes the chemotherapy access easier. As I’ve had lymph nodes out in my right arm that arm is out of use so all my treatment, blood tests, injections etc have all been done through my left arm. The veins have just about given up – they’re very irritated and sore and the nurses haven’t been having much luck using them for anything any more. So I didn’t really have much of a choice but to get this line put in. It’ll stay there now until the end so I don’t have to be a pin cushion any more but can instead just have one line that they use for everything. So although I don’t exactly love having it in my arm (in fact, it’s a pain in the arse) it’ll make the chemotherapy session itself (and blood tests etc) easier on the system.

I feel pretty confident, now that we know that I react to the chemotherapy when it’s given too fast, that I won’t have another funny turn this time round. It will be given to me over a longer period of time. So I’m not too worried about that. Can’t say I’m looking forward to the aches and pains because that’s really really tough. But I’ve got some strong painkillers up my sleeve, so I’m very much hoping they will have some effect. So now I’ve just got to take a deep breath, be brave, and go for it again. As the woman said who owned the B&B at the weekend “just remember, if it’s making you feel that bad imagine what it’s doing to the cancer cells”. So I’ve just got to remember that…and be thankful.

Roller Coaster

I’ve been waiting to get my peak energy and inspiration in order to post my next blog but unfortunately these days peak energy isn’t such a peak and I guess it’s more important to post and let you guys know I’m alive and kickin’ instead of waiting for that moment of energy that might not happen.

The last 10 days have been a bit of a roller coaster to say the least. This chemo thing is getting harder. I had my last cycle a week ago on Wednesday – I mentioned in my last post that it was a new chemotherapy, so in total I do three of one type and three of another type. This one’s vicious. I’d only had 20ml of it on a drip before my body decided to have a funny turn. Well, it wasn’t exactly funny. Quite scary in fact. After a few minutes of being on the drip I felt this intense heat rise from my chest up my body to my head. As it passed my chest it felt like everything was closing up and when it got to my head the heat was so intense it felt like my head was going to drop off. I waved for the nurse and they stopped the chemo and gave me oxygen and all was ok. To cut a long story (and a long day!) short, it wasn’t an allergic reaction. Apparently, it was fairly normal (well, a lucky 1 in every 10) and all they needed to do was slow the chemo drip down. When the doctor said this it took a HUGE amount to trust that what he saying was right because from my point of view it felt like something life threatening. And he was suggesting just giving me half an hour or so’s break and then getting started again. But somehow I managed to trust, and he was right. Whilst I was having chemo attempt 2, because I’d had a tough ride that day, I got a foot massage from the lovely Anne on the ward who goes round making people feel better with her massages. So amongst all the mayhem that was a nice treat.

The next couple of days were fine and there’s me thinking “wow, so I had a pretty tough ride that day but looks like I’ve got it all out the way” because compared to the other chemo cycles there was no fog or hungover feeling or anything like that on Days 2 and 3. Then Saturday came and boy did that change. Firstly I started to get achy bones and joints. By Saturday night it was becoming unbearable and by Sunday morning I’m in hospital with a fever. Apparently the achy body is “just” a side effect of the chemo but the high fever is what they worry about because the body doesn’t have an immune system to bounce back with. So I spent the weekend in hospital feeling pretty rotten. The achiness subsided yesterday, after what felt like an absolute marathon. Being in that much pain for such a long time is intense on every level. Even though energy levels aren’t so high right now I’m just so thankful to be out of it…well, it looks like that’s the case anyway.

Unfortunately I’ve got to go through that achiness twice more. But they’ve now given me pain killers which I can start taking in advance of the next chemo to pre-empt it, and otherwise it’s just a case of ploughing on through.

I suddenly remembered the other day the oncologist in New Zealand (who was suggesting the same chemotherapies for me if I was to have it over there) saying that the chemo’s they were going to give me were the strongest and harshest “because she knows I’m strong and fit enough to handle it”. (I think at the time she wished she hadn’t said that because on hearing it there was no chance that I’d be saying yes to chemo. No way). Anyway, later on down the track I went for the chemotherapy option and forgot about what she’d said. Well, I knew it was going to be hard but I guess until you experience something you have no experiential concept of what that actually means. And now I do. It’s the hardest thing by a long shot that I’ve had to put my body through. Keeping my head above water and staying positive in that 10 day marathon is a challenge to say the least…but I’m getting there slowly but surely.

So, as I said, it looks like I’m out the other side of this one and I’ve got 2 more to go. I’ve now got both Kate (otherwise known as the LAM – the “Look After Machine”) and Zac playing “looking after” tag team and they’re both the most amazing amazing support that I could ever have hoped for. So I’m a pretty lucky girl really. And now that I’m through this one, it feels like it’s manageable. Wow, it’s going to be incredible when all this is over…

Half Way

With three chemotherapies down I now find myself half way through the six cycles. How that happened I don’t exactly know. It’s this weird experience of time having just flown by but yet knowing that there’s still such a long way to go. In a way, I know that the next half will fly by too but at the same time it still feels like a lot to get through.

The Plan C for the anti-sickness that I wrote about it my last post went as well as could have been expected. The drugs basically knocked me out so sickness was a whole lot better. Better asleep than awake and having to deal with the nausea I reckon. Because my body didn’t take as much of a whack in those first 24 hours as the last couple of times I was less foggy for the proceeding days. The fog, however, lasted the same amount of time that it did in the previous cycles. It then lifted right on cue on the 8^th day, in time for the arrival of my friend Zac, who’s joined the Little Keepers Cottage crew from New Zealand… as have our 5 new friends in the photos. Well, they haven’t joined the cottage crew so much as forming the Little Keepers paddock crew. They’re very kindly beginning to lay eggs for us, which is a real treat to have.

So the next chemotherapy is on July 30^th and I move onto a different chemotherapy now, docetaxul. Apparently, this one is a much less aggressive chemo compared to the ‘FEC’ that I have been on. They’re not expecting me to feel so nauseous and they wouldn’t expect the same vein irritation that I’ve been experiencing so far either – both of which sounds good to me. I think overall it’s a less taxing chemo on the body but at the same time I’ve still got to deal with the cumulative effect of the chemotherapies up until now. So it’s just a case of keeping putting one foot in front of the other…as I am, and will continue to do.

So… just a short post for today, to update you and introduce the new members of the family. I’m doing very well on the whole – the first 8 days I do find very challenging but having the experience now and knowing that there is light at the end of the tunnel of those 8 days, is enough to get me through. And from then on, it’s such a treasure to be able to have a nice time again. After such hard times, the good times are so good often they feel so completely magical. It’s that pain and beauty is their full strength side by side each other again. Lots of love to you all. xxxxxxx…

Creativity as soul-food

In recent months I’ve kept on coming into contact with the concepts of colour therapy and art therapy. I haven’t yet investigated exactly how those with experience in these areas define them but common sense tells me they are “disciplines” whereby people use colour and art for therapeutic means, to assist with a healing process in one way or another.

I remember back in school days I did a lot of art and was really into it. I loved to paint, collage and sculpt. The trouble was, as far as I see it now, I was always doing it to impress; whether that be to get a good grade, or just to take home and be praised by Mum and Dad. It was never used (for me) as a tool of self-expression.

When I thought about the concept of art therapy I wasn’t sure how I would even begin going about doing art as a process for expression and healing, without worrying about the what the final product was, because I seem to be somewhat conditioned for my art to look “good”…whatever that means. When I came to think about it, I did wander how art can be good or bad, right or wrong? Art is art. It’s an expression. As Clarissa Pinkola Estes argues in Women Who Run With the Wolves, the book I’m reading at the moment, it’s soul-food. (This won’t be the last time I refer to this book – its one of my sources of a huge amount of inspiration at the moment.) Creativity feeds, and is an expression of, your deepest Self.

I’ve been meaning to give this art therapy thing a go but for some reason I hadn’t got started with it yet. It’s even available at the Olive Tree Cancer Support Centre where I go to a young women’s breast cancer support group (they call it art counselling there). I think it was that concept of not exactly knowing how to do art without focusing on the final piece, and instead the process. Then I came across this in Women Who Run With the Wolves:

“Go ahead, struggle through it. Pick up the pen already and put it to the page and stop whining. Write. Pick up the brush…and paint. Dancers, put on the loose chemise, tie the ribbons in your hair, at your waist, or on your ankles and tell the body to take it from there. Dance. Actress, playwright, poet, musician, or any other. Generally, just stop talking. Don’t say one more word unless you’re a singer. Shut yourself in a room with a ceiling or in a clearing under the sky. Do your art. Generally, a thing cannot freeze if it is moving. So move. Keep moving.”

It spoke to me…and so I did.

I decided I wanted to share this piece with you mainly because this was quite an experience for me and this blog is, for me, about expression of my process, opening up my world, and communicating some of that with those that want to be communicated with.

I’ve been feeling rather nervous, and a whole lot of other emotions, about next week’s chemotherapy, mainly because of my previous experiences so far. I simply don’t want to go through it again. But who says this whole Life thing is about what you want and don’t want, eh? It’s a process that I have to get through in my own way, be present with and grow from in whatever way I can. There isn’t any choice in it.

This afternoon I very suddenly felt now was the time to use colour to express and channel those feelings that were going on about next week’s chemo. I got out the pastels and drew strokes of pink and black, for no particular reason that I knew of, side by side each other on the paper, and before I knew it my eyes welled up and tears started dripping from my face onto the paper. There was something about the beauty and healing pink right next to the harshness of the black. So simple, but that’s all I needed to express to release what was going on for me.

The piece went on. Minimal thought into what it was turning into, just colours and shapes of expression coming together.

A place of peace for me is our bathroom. When I’m feeling rough in the mornings Kate often runs me a bath and lights the candles in the bathroom. We have this gorgeous old ‘cottagey’ lilac-blue bathroom with a really calming feeling about it. I lie in the bath as the morning sunlight shines through the wisteria-framed window. In my fairly foggy state after chemo I like to look at the beautiful shapes and colours that form as the sunlight falls on the water and the edge of the white bath. Just looking at that in itself and being in that moment is enough to swallow me up in a moment of raw beauty.

The colours that started to come next onto my paper were those from the bathroom, that place of tranquillity. And a teardrop shape emerged from the proceeding strokes around where the tears had just fallen onto the paper. Despite the teardrop shape though, and the contrast with the harsh black, the feelings of tranquillity and beauty were the strongest, shining through and making their presence be known on the paper. Then I realised that that’s my process in a nutshell…and I wanted to share.

Out of the fog

Having been through two chemotherapies now it appears that there is a cycle (not an easy one) of a fog descending and then lifting from my body. A couple of days ago the fog lifted and only then is it when I can contemplate writing a blog again. Only then is it, too, that I return to reading without blurred vision, return to singing without the noise of my own voice and harmonium hurting my ears and return to doing more normal day-to-day things like chatting on the phone, emailing and watching things on my computer (yes, it’s true, watching dvds and doco’s is now something that I spend my time doing, like normal people. It turns out it’s the best distraction from feeling all the nasties that are going on with my body and I think will play a very important role in getting me through this process).

So despite how I like to perceive myself as doing things in life with ease, chemotherapy ain’t easy. In fact, it’s hard. It’s probably the hardest thing I’ve ever had to do in my life. So… so be it. As is the title of my blog – I trust the process of Life – so I trust this process.

The hardest part so far is that the doctors and nurses haven’t got the first 24 hours’ anti-sickness right for me yet so that first 24 hours after chemotherapy really has been tough. I can see from others that I’ve chatted to, who are going through chemo, that it’s totally possible not to feel rubbish, but different people need different concoctions, and it’s just a case of trial and error for each individual. I’ve got my fingers and toes crossed for Plan C of anti-sickness for my next chemo on the 9^th July.

The other main hard part is having that feeling of not firing on all cylinders. It’s part of the foggy feeling. It’s like a week-long hangover without any of the fun part of getting drunk. Wow, how I took for granted clarity of mind before. I guess we do – we don’t truly appreciate things until they’re not there anymore, when we can see the contrast of what it’s like not having that something any more. That’s what I see as my main blessings in this process – I’m getting to experience first hand how completely incredible these things in life are. And I’ll have these experiences forever more. Clarity of mind is something that I will treasure forever more.

I’ve thought a lot recently about just being thankful for waking up in the morning and being ‘with it’ and ‘alive’. We used to learn about the prayer in Judaism that you say when you wake up in the morning for exactly that reason. But how many people actually get to feel that gratitude sincerely from a deep place when they say it.

The other thing that I find hard is how my body’s reacting to food. First thing to note is that I’m extremely lucky in that so far I haven’t lost my appetite at all. I’m eating enough and my weight has stayed fairly consistent so that’s really good news. But the way my body is reacting to food is different to say the least. I seem to need to eat about seven times a day – no exaggeration. I can’t eat the hugest amount when I do eat (probably about half of what I normally eat at any one time) but to make up for it I need to eat regularly…very regularly. If I’m able to see if from the outside it’s quite comical I guess, but when I can’t it’s just plain annoying. It only lasts for the first week after chemotherapy, when my body’s generally acting a bit weird and trying hard to balance itself out. I generally wake up between 4 and 5 in the morning with hunger pains so severe that I have to get out of bed and have breakfast number one. Kate and I have now started to organise like a midnight-feast-type scenario (like we used to do when we were kids) the night before and put it next to my bed so that I can eat and go back to sleep. Then I have second breakfast at a more normal hour and third breakfast or early lunch late morning. The day continues a bit like this. But you can imagine what it’s like for Kate, given that in these early days after chemo I can’t do a huge amount for myself. She’s like this incredible kitchen machine, churning out one dish after the next, both of us trying to keep up with my body’s crazy reactions.

It’s not like normal hunger – it actually causes big problems if we don’t respond to it. It’s like a small child throwing uncontrollable tantrums. The hunger hurts and it actually makes me feel sick. Before I realised this was actually what was going on I was taking a second kind of anti-sickness pill. So when I realised through this chemo cycle that all I needed to do was eat all the time I didn’t need to take that other anti-sickness as much. It’s nuts. It just didn’t occur to me that hunger could do that. Well, I guess it doesn’t in a normal scenario. But this scenario ain’t normal. The good thing I guess is that my body is telling me what it needs and I’m able to hear it and respond. The hard part is the roller-coaster of a ride that it’s taking me on.

So, there it is. The fog’s lifted from Round 2. I’m a third of the way through my chemo’s. I’m petrified of Round 3 but… I trust…and so the journey continues.   

Onto the next chemo

I can’t quite believe that round two is upon me already. In the first few days of chemo I really thought that the next six months was going to be slllloooooow. Then before I knew it I’m onto the second chemotherapy, out of the six. A couple of days ago I was feeling a bit like I was psyching myself up before a sports match – you know how they do – growling, thumping chests (well, in the New Zealand haka at least). Sometimes I feel a bit like this is just one big game and I’m out to win. (That won’t be a surprise to those of you that know my competitive nature…which, in a way, has tamed over the years, but not when I’m competing with myself. I like to win. Hehe. It doesn’t always serve me well but in this scenario I don’t think it’s such a bad trait.) 

But my hair falling out kind of interrupted that “go get ‘em” feeling. What a crazy experience. I knew it would be, and I’d done as much preparation for it as I think I could have done. One woman in New Zealand even told me it would fall out around Day 15, so I knew the rough timeframe. I’d shaved my head to get used to the bald look. Even though I don’t wear earrings for pierced ears anymore I bought big dangly clip-on earrings (oh, how mum would be proud!) because I knew they’re meant to look good with a bald head. (Again, the competitive side of me sees rockin’ the bald look as a bit of a game – “how-well-can-I-do-this” type thing.) I’d kitted myself out with a few new head scarves and hats, bought some suitable makeup for when the eyelashes and eyebrows dropped. The whole shebang.

I was on the phone a couple of nights ago and scratched my head and a clump of hair came out under my finger nail. I then went up to the bathroom and started tapping my head and there it was…all falling into the sink. So I got the shower head to it and started rinsing it off. As ever, Kate was by side, just ‘being’...calmly supporting.

One of the things that I’m learning, or trying very hard to learn through all of this, is my expression of emotion – not suppressing emotions that come up, but allowing them to come out. Then when they are ready, also allowing them to pass on through, not holding on too tightly to them. Not easy, especially as it’s not something I’m used to. It was something that I learnt (theoretically) at Anahata (the retreat I was at in New Zealand), as it’s part of the yogic teachings, but I never really got the hang of it experientially, until all this came along.

I can see it hurts me, not letting emotions out. It literally hurts, funnily enough, now that I take note of it, in quite a physical way. In the past I guess I’ve always wanted to be ‘strong’ and not show my ‘weaknesses’ but I’m starting to see emotions for what they really are. It’s just movement of energy up and out. Not letting it out actually doesn’t serve me at all. I reckon, in fact, it makes things worse.

So here I am, going into this situation of losing my hair, commentating internally “yep, I’ve got this one sussed. It’s fine. You’re all good”. Washing washing. Watching watching. If we go back to the analogy of the ‘inner team’ that was one character – the type that thinks it’s better to just plough on through and hold it together.

I looked in the mirror. Wow, I’ve even got a lump in my throat as I’m recounting it. Even though I know I am still me, regardless of my physicality, bizarrely there was a split moment at that point that was surprised that I’m still in there somewhere. Funny eh.

There were still patches of hair left but I decided to pat it dry, put a hat on and call it a night, and let the rest come out as and when it wants to. At that point another member of the ‘inner team’ (who’s pretty strong these days) piped up realising that actually that was a pretty big process for me, and that that’s ok. I reminded myself that it’s ok to cry and that I need to express this one. Kate asked me how I was. I cried. Quite a lot.

There was one aspect of the narrative around the emotion that was based on the physical… obviously. “I don’t want to be bald”; “ I don’t want to look ill”; “I want to look normal”. Plus, my scalp felt very raw and sore. But the larger part of the emotion was something intangible. It was almost like it wasn’t just my hair that had just washed down the plug hole. It was something much greater. I was on the phone to Zac, trying to describe it, not really doing the feeling justice but trying anyway. “It’s as if I’m shedding layers, one by one, and that that was a big one that was just washed away”.

That’s all I could say to describe it, and it still is. Although it was a big emotional release I realised at that point that that shedding process was, and still is, not necessarily such a bad thing. I needed to cry and I hadn’t done for a little while, so it was much needed. At the same time, that feeling of shedding layers doesn’t have to be something negative. Change is scary but actually I have a deep knowing in all of this that this process of change is a positive one. It just takes a huge amount of that letting go and trust. A lot of trust in the process.

However, I can’t deny these last couple of days have been exhausting. It’s used up my energy, that’s for sure. There I was in Week 3 of the chemo cycle, which is, and has been, the week where you’re ‘on the up’ so have energy to actually do things. The challenge in that week, as far as I see it, is enjoying the time of having energy and doing some nice things but balancing it with rest and recuperation for the next round. But it’s very tempting just to ‘do do do’, because I can.

I decided to leave Monday and Tuesday free for resting before round two and actually it turned out I needed it big time as all my energy seemed to have gone down the plug hole with my hair.

So I didn’t manage to maintain that pre-sports match chest-thumping, growling at the opponent feeling. Instead I’m feeling a little bit more fragile and vulnerable. But I know that’s ok too. This process was never going to be an easy one, but it definitely is one that’s filled with wonders beyond comprehension.

Easier to pass through when I have the most unbelievable amount of support that I could have ever have dreamed of. I’ve always known, and been very thankful for, the amount of love that I have in my life, but I’ve never seen it coming at me, holding me, spring-boarding me with such glowing strength.

I know that mum is with me in this journey, but particularly today, on the 12 year anniversary of her passing, I want to acknowledge her. These days the 17^th June is a day to do exactly that. In actual fact, however, she makes up a huge part of who I am and in that way she walks alongside me every day. But it is a day to acknowledge, give thanks to her and for having her in my life and give love… more love… to whoever, however is possible. Like she did.

Many of mum’s “crew” – her closest friends – have been in touch with love and support recently. That feels really special. 12 years on you’re all still there, loving, supporting, being that incredible friend. Thank you.

Life is Beautiful

Everything right now just feels so totally amazing. Why is it that we have to go through such pain in order to truly experience the beauty of life. I guess it’s that old thing of dualities. It’s like I have to go through all that with my body in order to really see – to actually experience – quite how incredible the body is.

Chemo was a bit of a whack on Day 1. I’ll set the scene from the beginning of the day. Kate’s glands were up so she couldn’t come with me so Hazel came…and what totally gorgeous company she was. We set off early and arrived in Brighton and went to a wee café for tea before we went to the ward. Surprisingly, nerves weren’t too bad and I had this feeling of acceptance that stuck with me through the process...just about. I’ll explain in a sec how that was nearly sabotaged. It was like, “here I am, this is what I’ve decided to do and this is what I need” kind of feeling – for those of you that know about my mind’s inclinations over the past 6 months it was significant for me to have that acceptance and ease going in to the process.

I’d been to a hypnotherapy appointment the day before – it’s not hypnotherapy as we know it from the TV where they get you doing an involuntary chicken dance or something. It’s more of going through a deep relaxation process.

This is something that I’ve been going through over recent weeks anyway, but I talked through with Jan, the hypnotherapist, who has been through breast cancer herself, the importance of getting your mind into that deeply relaxed state, as often as possible, but especially during treatment. Then the body can get on and do what it needs to help itself. Jan’s story is amazing. If you’re interested check out how she got through her treatment and managed to minimise side effects: http://www.hypnotherapyforliving.co.uk/

It makes sense really, when we’re stressed and contracted we get sore backs, RSI, you name it. When we’re relaxed, we’re expanded, things flow and cells can get on and do what they’re meant to without restriction. So that was my aim and that continues to be my aim day in day out. Maintaining that relaxed state was a challenge to say the least though as the chemotherapy injections got closer and closer and then as they began.

I went to a conference once in Auckland on clustering in business – how businesses within and across industries can work together to maximise profit and resources. It was a fascinating conference. The workshops and presentations covered clustering at an inter-national level right through to clustering within ones own mind. Klaus Haasis presented my favourite workshop that I’ll never forget. It was on the “inner team”. We’ve all got one. It’s that team of characters inside our head that all play different roles at different points in our days, interactions, decision-making processes etc. We might have one that’s bold perhaps, one that’s shy, one that’s money conscious and one that loves to spend, one that’s angry, one that likes to giggle. You get the gist. Some of the characters are dominant and others remain in the background and only pipe up every now and then. It’s the dynamic of that team and the strength of each of those characters in each situation that governs how we react and respond in different situations. Through my yoga I’ve learnt to practice sitting back, observing those characters, trying not to get involved. This was especially important as a riot was about to break out.

As I was heading towards that blue wipe-down arm chair in the ward and the injections were being prepared two main characters piped up for war. One was that of relaxation that was dominating when Hazel and I were in the café, that had gone through the deep relaxation with Jan, that knows how important it is to be relaxed. The other was that of fear that triggers a crazy pounding heart, adrenalin, sweats and contraction. I’d practiced my routine for chemotherapy quite a bit before the session began so I had the yoga nidra (deep relaxation) and visualisation that I was going to do during it and a play list of chanting and kirtan as well. But there was no way of practicing for the warfare that was about to begin in my head.

It was such an interesting experience and it wasn’t easy to sit back, watch and not get involved, and try and settle the fear. But with my utmost determination and willpower, that terror that was trying to sabotage the process for me died away and I went on my way with my meditations throughout the process and welcomed the chemotherapy into my body so that it could do the best job that’s it’s capable of doing, of mopping up any cancer cells that remain.

So despite the attempted warfare, the session itself was fine. In fact, the chemotherapy ward that I described in my last blog post was nothing like I perceived it last time either. I mean, I was in my own little meditative world but quite aware of the amazing representation of society in that room, each person with their own coping mechanisms: a gay guy behind me that had flowers, chocolates, the whole shebang. Vistors every 10 minutes entering the room, accompanied with intermittent roars of laughter; a gorgeous woman a similar age to me next to me who said she had a 2 year-old, also at her first chemo session. She was also sat there with a smiley sister. Then a middle-aged woman across from me sat quietly on her own getting on with it all.  There was something rather comforting, I felt, about that whole scene. Not sure exactly what. Maybe it was the diversity in the room – that we’re all going through cancer, whatever ‘shape’, ‘size’ or ‘type’ we are and we’re all getting through in our own way…

Hazey and I went for a little picnic on Brighton beach and ‘debriefed’ on our experience before heading back home.

The rest of that afternoon and evening was hell to say the least – the anti-sickness stuff that they gave me didn’t quite work for me. Not an experience that I’d want to re-live. So we called a duty doctor that night to come and give me another anti-sickness injection and that did the trick…and there’s been nothing like that since. Energy levels have been up and down but generally it’s all been ok.

One of the hardest things so far I guess is learning how to let go. Not having any expectation of what I’ll do next or how I’ll feel because I just don’t know, and just learning to be with what ‘is’. That, along with the change in my sensory experiences I suppose. My sense of taste and smell changed drastically for the first few days after chemo. Everything tasted and smelt gross. The smell thing isn’t too hard to deal with. I just made sure I didn’t go anywhere near anything that had a fragrance. But the taste thing is harder to deal with. It governs your gag reflex and your desire to eat. Slightly tricky when you’re hungry but you know that the food has to pass through your mouth first in order to satisfy that hunger. It’s part of the letting go thing I guess. Having no choice but to give in to the fact that eating and drinking at that point is not for pleasure but for sustenance. I was kind of going through a bit of a grieving process with all that, when unexpectedly my pleasurable sensory experiences returned after about Day 4.

I just find it so incredible – that innate ability of the body to rebalance. I’m experiencing it first-hand. It’s unfolding in front of my own eyes. I’m doing everything in my capacity to help my body recover, protect itself and recooperate and it’s doing it. I’m not saying I have any idea how the rest of the process will unfold, but right now it’s in a process of rebalance. From limited energy to more energy, from sensory changes back to normal senses, from constipation to normal bowel movements, from groggy mornings that I wasn’t able to do my yoga practices to mornings now that I feel normal and am able to. Kate and I went out to a Turkish restaurant last night to celebrate, after I’d been to a totally gorgeous young women’s breast cancer support group at the Olive Tree in Crawley. Gees, food…and life…have never tasted better. Life is B…E…A…U…T…I…F…U…L.

Chemotherapy about to begin

As I sit down to write this, wanting to communicate with whoever wants to be communicated to, I get knots in my stomach. I want to share a bit of my world but it’s hard enough processing it myself, let alone communicating it onwards. But there’s something rather therapeutic about the writing… and the sharing…and the knowing that, even though not in physical proximity, I’m letting others in.

I’m feeling nervous about the process ahead – the chemotherapy begins tomorrow – but I’m always reminding myself that I have no idea what actually is ahead. In fact, none of us do. It’s just that my particular circumstance highlights this more so than the average situation. I keep on projecting what it will be like. My mind does a convincing job of making me think that it knows, but it doesn’t.

Kate and I went to the chemotherapy information session last week to learn about what the process entails, or could entail, although the nurse specifically highlighted that they don’t know what each individual is going to go through, so it’s just a case of ‘wait and see’. At least she didn’t pretend. We had the most straight up nurse talking us through it all – not all happy clappy trying to make light of the situation, nor all doom and gloom, but basically telling it how it is, that it’s not going to be easy but that her and her team are there to make sure I get through it. Maureen’s her name. Completely gorgeous, as were the rest of the nursing team that we met.

The chemotherapy unit itself though is, in a word, grim. It’s enough to make you feel ill even without the chemotherapy. How is it that whoever designed that space thought that ‘hospital blue’ wipe-down arm chairs in a pasty white room, with that sterile feel in the air and with everyone sitting round the circumference of the room looking in, like an old age home, was a good design for a chemo unit, conducive to people getting better?! Maybe it’s part of a test as to who can maintain their centre in the toughest of situations in the grimmest environment possible. Well…I’m up for the challenge.

Kate and I were pretty pleased with ourselves that we still had our feet firmly planted on the ground as we walked out of there. In fact, so much so that we ended up doing a bit of shopping round Brighton and then out for pizza and a glass of wine in Lewes in the evening. First glass of wine in over 6 months. Delicious…despite the restaurant not having my favourite pinot noir. My excuse for the wine was that I thought it’d be a good idea to give my liver a bit of a wake up before it has to deal with the chemo. Nuh, I actually just felt like celebrating. Despite a difficult session at the chemo unit, life felt good. Really good.

I had to laugh when I was just reading through my new book Anti-cancer, a new way of life by Dr David Servan-Schreiber. A friend who’s going through breast cancer in New Zealand uses it as her bible and on first glance it does seem fantastic. I was just flicking through the ‘anti-cancer’ foods chapter and my eyes stopped at the Red Wine section: ‘red wine contains many polyphenols, included the resveratrol (which I take as a supplement anyway)…[which] can slow the three stages of cancer development... by blocking the action of NF-kappa B’. The scientific jargon won’t mean much to most of us but the funniest part was flicking to the end of the section ‘pinot noir…is particularly rich in resveratrol’. Positives come out of every situation - my favourite wine has anti-cancer properties. What a result.

Now I find myself having a bit of a moral dilemma as I’m writing. I’ve gone through the last 6 months painstakingly trawling through research, tearing my hair out, being bombarded with information by doctors, therapists, friends and family about what they think the right foods are to be eating, the right drinks to be drinking, the right lifestyle, the right this, the right that to fight cancer. It’s a really really tough part of the road that you wouldn’t know until you’re in it. It was all new to me. I didn’t know any part of what I’ve learnt before I was diagnosed and then suddenly having to filter the onslaught of information… It’s near to impossible without going crazy. I desperately wanted to put the ‘right’ things into my body but there are so many views on what those are. Along with the shock of the diagnosis, the fear of the process ahead, the logistics, the communication… the sheer amount of information was overwhelming. That process of working out what’s right for me, what me and my body need still continues, now with the new challenge of chemotherapy to add to the mix.

The point is, though, that having had 6 months of that, my first reference in my blog to my findings and efforts on diet and lifestyle is to red wine!? Ah well, it made me laugh, so I thought I’d share. I’m sure you’ll hear more in due course on aspects of diet and lifestyle that I’ve been working hard on. But for anyone that’s now wants to get smashed on pinot noir because of the anti-cancer properties, obviously the book is suggesting drinking a very limited amount, but it is nice to know that it might do good if and when I do have some.

So I began this blog referring to my nerves and wanting to share and the above is what came out. I didn’t try to ignore the nerves but I don’t want to give them much attention either. I think it’s just a case of letting that uncomfortable feeling be there and carrying on, again, knowing that I have no idea what lies ahead so I may as well stay here, in the present, where I do know.

Arrival into Picture Perfect England

Irony or just as the universe intended? We've landed into the most perfect dream home that we could have ever imagined...kind of amusing that it's to embark on possibly the most challenging journey of my life… or is this just how it's meant to be? Little Keepers Cottage - to support and hold us through all this. As soon as we stepped foot inside it felt like coming home.

I got up this morning at 3.30am and couldn't actually stay in bed any longer. All I wanted to do was go downstairs and 'be' - soaking up the warm, homely vibe of our cottage. I actually can't believe it's our new home - set up so perfectly by the rest of my family. I sat waiting patiently for the first light before I could put my wellies on and go and introduce myself to the sheep. I walked around the paddock smiling, listening to the sounds of the morning - the birds, the cockerel, the peace in the air. I'll say it again - I actually can't believe this is our new home. If there's any place that's going to support and nurture me on my healing journey, this is it. 

So yeah...we've arrived.

My head's shaved - may as well start as it will continue. You may or may not know that I shaved my head last year so it wasn't as big a deal for me as it may be for some. I felt like it's nice to do it whilst I still have the choice and get used to the shaved look with eyebrows and eyelashes before I go completely bald. Any ideas on rockin' the bald look gratefully received. Hehe.

...so here I am - no boobs, no hair, but same me...knowing that I am soon to be embarking on something big, something profound. But I'm ready as I'll ever be. Always trying to remember that the fear of suffering, in my experience so far, is harder than the suffering itself. It’s the projections of what the road ahead might be like that cause the problems. If I see those projections and fears for what they are and stay here, present, in this very moment, that’s where life for me is at its easiest. Right now, right here in this very moment, life is perfect.

On our way

I started this blog entry sitting on the plane from Nelson to Auckland, feeling the most incredible sense of gratitude for the last four and a half years that I’ve spent in the Land of the Long White Cloud, New Zealand.  The sun was setting in its purest beauty as I looked out from above, listening to some heart-opening kirtan. My whole being filled with smiles. Hazel, my sister, said the other day on Skype that it must be really hard for me to leave and say my goodbyes. Somehow, though, it feels totally ok and exactly as it’s meant to be… and now on to the next chapter.

I was meaning to post a wee blog update that I was all good to fly as we landed in Auckland airport but it was a bit of a whirlwind of activity getting from domestic to international, through security and on to the next plane so that didn’t happen. The next leg, on to LA, was fine…well, about as fine as long-haul flights go and the beautiful Oli met us the other end. Now, Kate and I are being looked after beyond belief (well, you can believe it, its Oli after all)– a good Jewish Shabbat lunch awaiting us, smoked salmon, pickle and olives, soup and bread, followed by snooze in a big white cloud of a bed, hot shower, snuggley towels, the full works. Now sitting writing with a blueberry smoothie in hand and another 24 hours or so to recuperate before we do the final leg.

All fairly straight forward really. Each Joseph with a smile on their face and word of dinner from a yummy veggie restaurant this eve. Whoop whoop xxx

Wrapping up in New Zealand

It’s a little bit difficult to know exactly how to begin this blog to be honest. I can’t go through all the details of the last six months but I can tell you it’s been both heavy and magical, and a million other things, all at the same time. The consultations I’ve had, the anxiety and fear, the laughter, the incredible people I’ve met, the learnings in it all… the experiences are indescribable really but at the same time so deeply deeply treasured.

I’m just a few days away from leaving New Zealand, a country that I love so much, but yet it feels exactly perfect and the right time to be doing it. I had my bilateral mastectomy just under 2 weeks ago. The wounds are healing nicely and the breast specialist says that if healing continues as it is that I’m looking good to fly next week. Flights are booked for Saturday so looks like we’re all set.

Kate and I are packing up our place (well, Kate is really – I tend to be plonked on the sofa cheering her on) and getting ready to head off, going on lovely walks down by the river and taking in the magical views of Golden Bay in our last few days. We’re doing research into all the wonderful things that the UK has to offer in terms of complimentary therapies for cancer and generally looking into things the other end for our arrival.

Kate and I are moving into a cute wee cottage in the Sussex countryside that my incredible family are kitting out for when we get home. Wow, what an incredible bunch my family is. What a blessing to be able to focus on what I need to be focusing on – healing, the journey back to the UK, mental preparation for chemotherapy and, when it comes around, settling back in the UK and all the changes that that will bring.

So this blog is here for Kate and I (and whoever else crosses our path) to share our journey through this with you all, so that we can keep you all up-to-date. It’s not something that you should feel obliged to read or anything like that. It’s more if you want to know how we are, what’s going on etc, then you can check in here for the update. Part of the blessing for us of having so many loving, caring people in our lives is that we have a lot of people we’d like to keep in the loop, although given the nature of what’s going on, it’s difficult to speak to everyone individually. So this is our way of opening up our world and sharing a piece of the journey with you.