C world continues to keep me busy - this time with the inevitable wig shopping. Apparently, C patients get offered an NHS wig at a subsidised cost but, being curious, I wanted to know what was on offer in the ‘private’ world of wigs. I can’t say I’ve been looking forward to it – mainly because I DON’T HAVE TIME TO GO WIG SHOPPING! I have much more important things to be doing with my time, like drinking green tea and hanging with my bestie, Lila! It’s just another big inconvenience in this loathsome world. However, (big sigh) I embraced it! Armed with a best buddy and instructions on how to find this damn place, we set off to Swindon (the fact that I am frequenting this place for various appointments is upsetting enough on its own - humph!). Well, could we find it? It took a bloody age – more time wasting. It’s located in the strangest environment - an industrial estate full of burly men who we kept having to ask for directions. Very surreal. We finally found the odd little office, off another office, off another office, in-between lots of men going about their daily duties! It all felt very random. Anyway, we pitched up and finally got our hands on the wigs – literally, every time the sales lady left the room, we made a dash for the mannequins, tried the wigs on, laughed hysterically and then desperately tried to get the wigs back on the right way before she returned! Childish I know but very funny. In between, we did serious trying on. I’m really not sure she knew how to take us though, ha! We had a good giggle and kept the tears at bay by concentrating on all the options: fringe, sans fringe, peroxide, black, red, Farrah Fawcett, the lot…
The plan was to get some photos up here of shocker wigs but I honestly look so ridiculous in most of them, they are too bad to post! So here’s the scoop……finally, I settled on a bob. In fact, Anna commented ‘that’s what you look like when you actually bother to do your hair’. Everyone that knows me knows I have no desire for hairdryers; straighteners or hair products, preferring the ‘just got out of bed look’ or ‘tie it up’ look! Having wanted something a little different – well, let’s face it, it’s the only time in your life you get to wear something out of the ordinary and life is kind of wild right now so why not wild hair? – I was persuaded that this was the one that suited best. At least I now know that a fringe looks ludicrous and red is not my colour! It’s not to say I won’t carry a shocker pink one in the handbag to sneak out every now and then though! Yes, maybe I should purchase a couple – one safe, one super fun! Although, after nearly falling off the chair at the price, maybe not! Who knew wigs are so bloody expensive? Damn you, C!
So, In the end, quite a hilarious day. Next step - have a think, make a purchase then learn all there is to care for a wig (you’d be surprised!). Then, look into scarves etc – honestly, I’m so cack-handed when it comes to things like this. I couldn’t tie a scarf round my head AND look stylish if I tried, so practice is most certainly needed in this area! After all, I have C chic to work on! But, most importantly, we need to take some time to talk to Tilly, to prepare her for the next steps and have some fun with da wig!
Tuesday 25 June 2013
Tuesday 18 June 2013
Limbo Land
Surprisingly, or not I suppose, it was quite hard to settle back into daily life after the PB course. Coming out into the big wide world was actually quite a shock and all felt a bit harsh after the calm, healing environment I had become used to. Everything felt very busy, hectic and noisy - to the point that I almost turned around the other way this time and headed straight back to the centre for another couple of nights. How funny for a girl who was scared of going in the first place. That said, I was so happy to see the family and Sarah had so kindly let herself in, got the kids all ready for bed and cooked a lovely supper waiting for Wayne and me. Mmmm, bliss. I had a deliciously cute welcome from little Lila and Tilly, proving that it can be a positive thing to be missed by the children – definitely feel more appreciated afterwards.
Needless to say, there was a bit of a crash down the following day, which actually felt ok – I think I almost expected it. I’d had such a good run of positive days and feeling fitter that it was bound to happen, right? Lots of tears, feeling foggy and frightened again and constant pondering of what lies in store for me. Luckily it’s passed, though, and I’m armed with strategies to help me through tough times. I managed a bit of relaxation and even managed a meditation. How long that will last, I’m not quite sure. All the coping strategies I have learnt at PB are placed in a shopping bag in my mind and I will bring them out, one at a time, try them, choosing the right time for each - some now, some possibly not until much further down the line. Otherwise I know what I’m like – I rush into trying everything and then get frustrated as it doesn’t help or I can’t focus etc.
So, here we are, waiting for the next chapter. Waiting to sign my life away, waiting to receive unpronounceable drugs, waiting to kiss goodbye to my hair… yep, waiting for the dreaded chemotherapy. I think I just assumed because of the speed at which things have moved since the diagnosis - being swept off your feet and tossed into the air like a swirling leaf in the wind - and the severity of C, that treatment would move at the same speed and must be fairly urgent. But no, it doesn’t appear to be the case. Apparently, it’s not as urgent as we think – plus, they want to give you time for the wound to heal. Not forgetting there’s a cancer queue in Swindon, which I’m sure adds to the wait. Ok, so I understand the importance of the wound, however, do they not understand this just gives you more time to build up fears and unimaginable thoughts to turn you into a complete basket case by the time it actually comes around, ha?! Seriously though, my mood and well-being is picking up, I’m feeling stronger and generally happier and have more ‘normal’ days now, more better days than bad. I’m still very preoccupied but longer periods of time without thinking of C. A big HOOray to that.
So, what’s a girl to do whilst she’s waiting for chemo? Well, the true answer is: I’m not really too sure but since checking out of PB, I’ve gone for the busy, busy, busy option (surprise surprise, I hear friends say!). Well, why not make the most of not working and fill my time with lovely things, right? Plus, I’m very conscious that this is my month and, come July, I’ll be out of action for a good few months - or at least not quite as sociable I expect. So, I’ve thrown myself back into the day-to-day school runs, Lila time, catching up with friends, gardening – yes, we now have beetroot, peas, french beans, carrots, celery and sweet corn (bloody miracle to be honest!) and, of course, potatoes – house jobs, and so it goes on……BUT, as a result, I’m exhausted! I’ve got that ‘wading through treacle’ feeling that you get in the first few weeks of pregnancy again. Perhaps because my body is still trying to heal this wound or because I went from not doing too much to suddenly full on days again with the two little munchkins? Either way, it’s a struggle to get through the day without a micro nap (which isn’t happening!) so I may have to rethink the next couple of weeks so that I don’t fall in the door of the hospital and look forward to chemo for some sleep time! I’m my own worst nightmare, I know. Quieter week this week methinks...
Meanwhile, I’m back in the kitchen, attempting to cook and irritating Wayne. I made my first quinoa recipe yesterday – mackerel, apple, pepper and quinoa salad. Well, I’m not sure it’s worth shouting from the rooftops about, but it’s a welcome alternative to cous cous, rice etc. We are making slow changes in the house, introducing new foods and generally being a lot more mindful about what we are eating. Tonight’s supper – sea bass on a bed of stir fried veg and bok choi (with oodles of chilli and ginger) and noodles with Tamari sauce (delicious alternative to soy sauce). Most importantly, I’m trying to cut out refined sugar products so, for example, I now have ‘no added sugar’ strawberry jam (tasted at the PB centre) – which, incidentally, is delicious. But, the trouble is (eek), I never really ate much jam in the first place and now I’m at risk of thinking it’s got ‘no added sugar’ so yeehaa, let’s eat loads of jam…. Then you’re worse off than when you started! I can see this as being a problem - keen to try substitutes for naughty foods and then eating way more than you did in the first place, ha! I’m cutting out processed foods too – in fact, I successfully made Tilly a salami sandwich for her lunch box and resisted the temptation to devour the whole packet in 0.5 seconds. Yes! I’m working on the green tea – managing about 3 cups a day, plus usual Roibush, plus water etc. But really, any Mums out there will tell you that you barely have time to go to the loo once in a day with children let alone time after time with this amount of fluids! I feel like I’m in the bathroom all day! Still, I’m guessing I should be a little healthier after all this awful experience. Must be a C silver lining, right? I’m exercising too. Regular power walks, hoping to break into a run as soon as wound gives me the go ahead.
Annoyingly, tears are still plentiful. Mainly due to still receiving cards on a daily basis - cards from family, friends, friends of friends, colleagues - and each and every one of them makes me sad. Well, firstly happy to receive something in the post and then sad. Sad because people’s words are so beautiful and it hits me right in the heart, sad because I’m hearing from people under these circumstances and sad because I’m touched by everyone’s compassion, care and love. What will I do when the cards stop?? Maybe I’ll write them to myself, ha! C has put me back in touch with some dear friends again, friends who drifted away for no particular reason other than the hectic way of life once children arrive. So, another C silver lining appears. To be honest, I’ve still not had the chance to tell all our friends yet. It’s not that I don’t want to – it’s just that there doesn’t seem to be the right time to break this kind of news. So, the story is still rolling so to speak.
My wound is doing ok but still falling at the last hurdle. Frustratingly, it just seems to be struggling to completely stitch up. Grrrr. However, at least no major setbacks - although it’s scary how scarred my mind is from the traumatic days of leaking fluids. I sometimes feel trickling from the wound and take a frightened peak only to find that it’s dry as a bone. My mind just playing nasty tricks. Night.Mare! I’m working on positive thoughts towards the treatment, although still feel very angry that I have to do it. I haven’t quite come to terms with losing my headlocks, eyebrows and eyelashes yet but have decided it’s quite alright for my leg and underarm hair to fall out. It would do me a favour in fact. SO, for that reason peeps……let’s get this show on the road...(and for goodness sake, wound, will you heal – otherwise, we’ll be put to the back of the queue!) So, next stop….appointment on 25th June with the Oncologist.
P.s Don’t worry guys and gals, it’s not all health freakish in this house – had a visit yesterday from Mr Hotel Chocolat himself, Dazzler, and was presented with a box of the scrummiest chocs… and successfully lost all mindfulness, almost eating the whole lot! Small steps, right?!
Today we fight.
Tomorrow we fight.
The day after, we fight.
Needless to say, there was a bit of a crash down the following day, which actually felt ok – I think I almost expected it. I’d had such a good run of positive days and feeling fitter that it was bound to happen, right? Lots of tears, feeling foggy and frightened again and constant pondering of what lies in store for me. Luckily it’s passed, though, and I’m armed with strategies to help me through tough times. I managed a bit of relaxation and even managed a meditation. How long that will last, I’m not quite sure. All the coping strategies I have learnt at PB are placed in a shopping bag in my mind and I will bring them out, one at a time, try them, choosing the right time for each - some now, some possibly not until much further down the line. Otherwise I know what I’m like – I rush into trying everything and then get frustrated as it doesn’t help or I can’t focus etc.
So, here we are, waiting for the next chapter. Waiting to sign my life away, waiting to receive unpronounceable drugs, waiting to kiss goodbye to my hair… yep, waiting for the dreaded chemotherapy. I think I just assumed because of the speed at which things have moved since the diagnosis - being swept off your feet and tossed into the air like a swirling leaf in the wind - and the severity of C, that treatment would move at the same speed and must be fairly urgent. But no, it doesn’t appear to be the case. Apparently, it’s not as urgent as we think – plus, they want to give you time for the wound to heal. Not forgetting there’s a cancer queue in Swindon, which I’m sure adds to the wait. Ok, so I understand the importance of the wound, however, do they not understand this just gives you more time to build up fears and unimaginable thoughts to turn you into a complete basket case by the time it actually comes around, ha?! Seriously though, my mood and well-being is picking up, I’m feeling stronger and generally happier and have more ‘normal’ days now, more better days than bad. I’m still very preoccupied but longer periods of time without thinking of C. A big HOOray to that.
So, what’s a girl to do whilst she’s waiting for chemo? Well, the true answer is: I’m not really too sure but since checking out of PB, I’ve gone for the busy, busy, busy option (surprise surprise, I hear friends say!). Well, why not make the most of not working and fill my time with lovely things, right? Plus, I’m very conscious that this is my month and, come July, I’ll be out of action for a good few months - or at least not quite as sociable I expect. So, I’ve thrown myself back into the day-to-day school runs, Lila time, catching up with friends, gardening – yes, we now have beetroot, peas, french beans, carrots, celery and sweet corn (bloody miracle to be honest!) and, of course, potatoes – house jobs, and so it goes on……BUT, as a result, I’m exhausted! I’ve got that ‘wading through treacle’ feeling that you get in the first few weeks of pregnancy again. Perhaps because my body is still trying to heal this wound or because I went from not doing too much to suddenly full on days again with the two little munchkins? Either way, it’s a struggle to get through the day without a micro nap (which isn’t happening!) so I may have to rethink the next couple of weeks so that I don’t fall in the door of the hospital and look forward to chemo for some sleep time! I’m my own worst nightmare, I know. Quieter week this week methinks...
Meanwhile, I’m back in the kitchen, attempting to cook and irritating Wayne. I made my first quinoa recipe yesterday – mackerel, apple, pepper and quinoa salad. Well, I’m not sure it’s worth shouting from the rooftops about, but it’s a welcome alternative to cous cous, rice etc. We are making slow changes in the house, introducing new foods and generally being a lot more mindful about what we are eating. Tonight’s supper – sea bass on a bed of stir fried veg and bok choi (with oodles of chilli and ginger) and noodles with Tamari sauce (delicious alternative to soy sauce). Most importantly, I’m trying to cut out refined sugar products so, for example, I now have ‘no added sugar’ strawberry jam (tasted at the PB centre) – which, incidentally, is delicious. But, the trouble is (eek), I never really ate much jam in the first place and now I’m at risk of thinking it’s got ‘no added sugar’ so yeehaa, let’s eat loads of jam…. Then you’re worse off than when you started! I can see this as being a problem - keen to try substitutes for naughty foods and then eating way more than you did in the first place, ha! I’m cutting out processed foods too – in fact, I successfully made Tilly a salami sandwich for her lunch box and resisted the temptation to devour the whole packet in 0.5 seconds. Yes! I’m working on the green tea – managing about 3 cups a day, plus usual Roibush, plus water etc. But really, any Mums out there will tell you that you barely have time to go to the loo once in a day with children let alone time after time with this amount of fluids! I feel like I’m in the bathroom all day! Still, I’m guessing I should be a little healthier after all this awful experience. Must be a C silver lining, right? I’m exercising too. Regular power walks, hoping to break into a run as soon as wound gives me the go ahead.
Annoyingly, tears are still plentiful. Mainly due to still receiving cards on a daily basis - cards from family, friends, friends of friends, colleagues - and each and every one of them makes me sad. Well, firstly happy to receive something in the post and then sad. Sad because people’s words are so beautiful and it hits me right in the heart, sad because I’m hearing from people under these circumstances and sad because I’m touched by everyone’s compassion, care and love. What will I do when the cards stop?? Maybe I’ll write them to myself, ha! C has put me back in touch with some dear friends again, friends who drifted away for no particular reason other than the hectic way of life once children arrive. So, another C silver lining appears. To be honest, I’ve still not had the chance to tell all our friends yet. It’s not that I don’t want to – it’s just that there doesn’t seem to be the right time to break this kind of news. So, the story is still rolling so to speak.
My wound is doing ok but still falling at the last hurdle. Frustratingly, it just seems to be struggling to completely stitch up. Grrrr. However, at least no major setbacks - although it’s scary how scarred my mind is from the traumatic days of leaking fluids. I sometimes feel trickling from the wound and take a frightened peak only to find that it’s dry as a bone. My mind just playing nasty tricks. Night.Mare! I’m working on positive thoughts towards the treatment, although still feel very angry that I have to do it. I haven’t quite come to terms with losing my headlocks, eyebrows and eyelashes yet but have decided it’s quite alright for my leg and underarm hair to fall out. It would do me a favour in fact. SO, for that reason peeps……let’s get this show on the road...(and for goodness sake, wound, will you heal – otherwise, we’ll be put to the back of the queue!) So, next stop….appointment on 25th June with the Oncologist.
P.s Don’t worry guys and gals, it’s not all health freakish in this house – had a visit yesterday from Mr Hotel Chocolat himself, Dazzler, and was presented with a box of the scrummiest chocs… and successfully lost all mindfulness, almost eating the whole lot! Small steps, right?!
Today we fight.
Tomorrow we fight.
The day after, we fight.
Wednesday 12 June 2013
Tea and cake? No chance!
Penny Brohn part 2 – Tues 4th June.
So, I decided to push myself out of my comfort zone – although, what am I talking about? This damn C has you permanently out of your comfort zone! I was keen to carry out the beginner residential course at PB (“Living Well with the Impact of Cancer”) but, when they mentioned they had an unexpected space this week, I wobbled a bit. Still, before I knew it, the word ‘YES’ came out of my mouth and I was signed up, just like that. I thought it would be insightful to complete this before treatment and, with a bit of persuasion from family and friends, I was back on the road again – and, yet again, saying goodbye to the children only two nights after arriving back from Cornwall. This time, I also said goodbye to my husband – just me, myself and I on this trip. My teammate is staying put and keeping the ship afloat while I’m away. Tilly was actually fairly complacent – “Oh, that’s ok Mummy, Mrs Troughton (her teacher) goes on courses too.” Phew. But it was hard to say goodbye to Lila again – I feel like I’m missing out on her cuteness at the moment. She is growing up so fast and changing so much each day. Waving goodbye to her and Wayne, I fight back the tears, determined not to worry about my little tribe (after all, they are with their number one Daddy who is more than capable of holding his own) and remember the reason I am doing this - to get stronger so that I can be a fully-fledged member of the Clarke team again.
I had a little video of Lila waving goodbye to post here but can't seem to get it to work so a little pic for you...
Other reasons I decided to attend this course:
· To explore the art of meditation.
· To try and understand and learn more about emotions linked to C.
· Time to myself......to think!
· To gain some strength, knowledge and strategies for treatment.
· To hear other people’s stories.
· To learn more about nutrition.
· To re-connect and tune in with myself spiritually, physically and emotionally.
· To explore the art of relaxation – practically impossible for me!
· To learn to live in the moment, without my mind racing and fluttering from day to day, chore to chore and errand to errand.
· To learn to control stress and be able to focus on life again.
“Living Well with the Impact of Cancer – This introductory course provides you with a tool kit of tried and tested techniques that can help you support your physical, emotional and spiritual health” PB.
Driving down the motorway to Bristol, I so nearly turn around on a couple of occasions. Thoughts swirling around: this is silly; I don’t need to do this; why am I doing this? I was also nervous about what lay in store, especially not knowing what sort of people would be in the group. That fear of groups and group work! Must stem from school! SO, what do I do? In need of some comfort, I stop for a quick spot of retail therapy on the way. Well, Cribs Causeway was just calling out as I passed! Bang - £*** gone! Yikes, that wasn’t meant to happen. How can a trip to PB be so expensive? Oh lord, that’s it now, I’ve blown it - hubby will never allow me to go again ha! I was SO tempted to stock up on wine, chocolate and naughty foods but I had to restrain myself. Partly because I want to do this properly and give my all to the centre, but mainly because a little part of me thought “what if they actually check your bags, frisk you, scan you, or – worse - you have to walk through a ‘naughty foods detector’ lol! What I did come out with, though, was four different bottles of shampoo and conditioner ffs. Is there any need for that? After all, I won’t be needing a damn drop of the stuff in a month or so. I wasn’t even hugely aware of my purchases (mindfulness at its greatest!) - just drawn to that aisle and, secretly, always on the look-out for the ‘perfect shampoo’, I went a little overboard. Must be a subconscious two fingers to C – and, hey, I can look forward to clean hair when it does decide to regrow! In the meantime, just try and take my squeaky clean, sparkling hair, you hideous disease you!
So, shopping out the way, shampoo in hand, still feeling apprehensive, anxious and a tad curious, I arrive at the centre to be shown to my room and settled in. Such a warm welcome - I literally felt wrapped in cotton wool almost straightaway. Ahhhhhhh. Then an absolutely delicious, nutritious dinner with ‘our group’ – twelve of us, including two husbands - followed by a guided relaxation and a cup of sleepy tea (or donkey piss, as Dad would call it!). Everything in place for a peaceful, undisturbed night’s sleep you would think – but, to my irritation, it didn’t happen. I awoke at 3.30am and struggled to go back to slumberland. My mind was too busy, almost excited. Excited about having this adventure on my own. Grrrrrr, too excited to sleep? How can that possibly be, in a cancer centre?
Bleary eyed, I surfaced the next day before breakfast for ‘mindful movement’. And it was well worth it too. I learnt some wonderful stretches and a mindful body scan, described as a way to get in touch with your body. The aim is to allow yourself to experience how different regions of your body feel, notice it and let it go. The session ended with a Qigong body tapping exercise – to get the ‘chi’ and blood flow to all the organs and extremities. I’m converted, felt quite exhilarated afterwards; ready to take on the world! We followed this with a scrummy breakfast – a feast. Think I managed to eat more than if I were on holiday… Eeek!
A relaxation followed this (I know, straight after breakfast, a struggle to keep my eyes open!).
The rest of the day concentrated on the two components of the “Whole Person Model” - physical and spiritual health.
Physical Health:
Nutrition – more fascinating, mind boggling information to help us learn how to heal our bodies. There are various studies that report some people have improved disease progression and secondary recurrences by dietary changes. (Sorry, at this time I don’t have references as I managed to leave all my notes at PB – C brain!). If anything, I can surely see that C is going to make me healthier and more aware of the foods I eat. Not a bad thing really and already happening – but, can I just make this clear… my diet was really not that bad in the first place (although my Mum may disagree!). Ok, so we drink wine and eat white rice and pasta, chocolate, cake, salami (yep, love salami!)… but, on the flip side, I eat a tonne of vegetables (yes broccoli is on that list!), fruit, fish… ok, could up the fish and could also up the whole foods, but I know people with far worse diets! However, onwards for me and there are changes to be made, starting with upping my green tea consumption - discussed today. I read that it has been researched and, according to Japanese studies, to gain the anti-cancer properties in green tea, our daily consumption should be five cups (Anti Cancer – Dr David Servan-Schreiber). A work in progress…..I naively thought one cup a day would do the job!
At the mid-morning break, we were offered a juice. A lurid, green juice – that smelt as pungent as it looked. It was a ‘hold the nose and down the hatch’ job for me as I’m not very good with raw fennel - it’s the liquorice taste, I think. It sent a real shiver down the spine but I convinced myself it must be healthy… eugh.
Spiritual Health:
So, C has certainly knocked my sense of certainty and questioned my beliefs - therefore, I’m very open to all suggestions here, please….
We explore:
More mindfulness - eating, talking, listening.
Practicing ‘What do I want’, not ‘what should I do’.
Controlling negative influences.
Connecting with one’s true self and recharging the spirit with Meditation (focusing on breathing) – the idea is this has huge benefits to our immune systems. LOVED this! More please!
Surely at mid-afternoon break, it would be cake? I started daydreaming about the prospect but, no – we were served a big bowl of guacamole and rice/oat cakes. Don’t get me wrong, it was absolutely delicious and enough garlic to keep any vampire away that night, but I was seriously craving some sweetness at this point. So, my plan was to buy some ‘healthy’ chocolate from their shop. But, to my huge disappointment, the shop was closed (lack of volunteers for the day). Oh no. Desperate for a sugar rush (or as close as!), I snuck off to my room and rummaged frantically in my handbag, hurling out nappy cream, teething toy, nappy bags, lip salve, snack pot and so much more crap and then……right at the bottom……I found an old chocolate Santa lolly left over from Christmas. Gone, in a flash! For the first time in my life, I LOVE my mummy handbag and all its annoying contents!
The first day closed with some practical advice about finances – always welcome!
The evening was chilled – a meal and some time to myself, walking in their beautiful gardens, writing and reading. After the first day my mind felt clearer, I felt some focus developing and had a few strategies to take me forward. I was looking forward to the next day.
Luckily, the night had a little less turbulence – a spot of fan therapy to drown out the silence. You know when silence is really loud? Ridiculous, I know. I’d gone there for peace and quiet but it was just a little too quiet for me! And a little too hot! So, a hypnotic fan helped me to drift off….zzzzzzzz.
The second day was based around the other components of the whole person model:
Emotional and Psychological health.
These areas helped me understand how much I am still reeling after the shock, fear, anger and sadness of the initial diagnosis, surgery and ludicrous amount of decisions you are faced with on this journey. Such a huge impact on your mind, body, stress levels and immune system. Lots of talk on developing a low stress lifestyle, looking at what causes stress etc. (and trying not to get stressed about being stressed ha!) -
“It’s not about feeling better, it’s about getting better at feeling”.
Also, the impact of cancer on relationships - some people’s stories were just too much. Heart wrenching. Positive stories too though and I certainly had some to add to this. C has kindly highlighted to me what amazing, strong and loving family and friends I have (although didn't really need your help with this one C!).
We also explored our feelings around a sense of loss for our before C lives. Very hard and emotional and again made me realise just how much I want my old life back! - lots of discussion about getting back in control of our lives.
During the day I made it to the shop and purchased myself some chocolate – no added sugar, made with xylitol, dairy free. Mmmm, it was ok, but by no means a chocolate substitute! More than one piece is too much! And, you’ll be glad to hear……..we got cake. Yey! Albeit a healthy one - in fact, not really a cake as we know it, but a taste of my future!
The day closed with an imagery journey and a mindful walk in their most stunning gardens. Very special, tranquil and nourishing for the soul. At the end of the course I was so, so glad I hadn’t turned around on the journey to PB. I feel truly enlightened and, yet again, have met some very special people with inspirational stories. It was a moving, memorable and fascinating experience that has armed me with lots of strategies to help climb my mountain and build my shield to fight this sickening disease. I’m starting to see C as a job - lord knows, I’m as busy as I would be at work with all the appointments etc. Being a C fighter has many different components and the main one I’m focusing on right now is taking good care of myself. It’s a huge, emotional and psychological journey and this course is helping me learn to be true to that and acknowledge the journey so far.
So, I decided to push myself out of my comfort zone – although, what am I talking about? This damn C has you permanently out of your comfort zone! I was keen to carry out the beginner residential course at PB (“Living Well with the Impact of Cancer”) but, when they mentioned they had an unexpected space this week, I wobbled a bit. Still, before I knew it, the word ‘YES’ came out of my mouth and I was signed up, just like that. I thought it would be insightful to complete this before treatment and, with a bit of persuasion from family and friends, I was back on the road again – and, yet again, saying goodbye to the children only two nights after arriving back from Cornwall. This time, I also said goodbye to my husband – just me, myself and I on this trip. My teammate is staying put and keeping the ship afloat while I’m away. Tilly was actually fairly complacent – “Oh, that’s ok Mummy, Mrs Troughton (her teacher) goes on courses too.” Phew. But it was hard to say goodbye to Lila again – I feel like I’m missing out on her cuteness at the moment. She is growing up so fast and changing so much each day. Waving goodbye to her and Wayne, I fight back the tears, determined not to worry about my little tribe (after all, they are with their number one Daddy who is more than capable of holding his own) and remember the reason I am doing this - to get stronger so that I can be a fully-fledged member of the Clarke team again.
I had a little video of Lila waving goodbye to post here but can't seem to get it to work so a little pic for you...
Other reasons I decided to attend this course:
· To explore the art of meditation.
· To try and understand and learn more about emotions linked to C.
· Time to myself......to think!
· To gain some strength, knowledge and strategies for treatment.
· To hear other people’s stories.
· To learn more about nutrition.
· To re-connect and tune in with myself spiritually, physically and emotionally.
· To explore the art of relaxation – practically impossible for me!
· To learn to live in the moment, without my mind racing and fluttering from day to day, chore to chore and errand to errand.
· To learn to control stress and be able to focus on life again.
“Living Well with the Impact of Cancer – This introductory course provides you with a tool kit of tried and tested techniques that can help you support your physical, emotional and spiritual health” PB.
Driving down the motorway to Bristol, I so nearly turn around on a couple of occasions. Thoughts swirling around: this is silly; I don’t need to do this; why am I doing this? I was also nervous about what lay in store, especially not knowing what sort of people would be in the group. That fear of groups and group work! Must stem from school! SO, what do I do? In need of some comfort, I stop for a quick spot of retail therapy on the way. Well, Cribs Causeway was just calling out as I passed! Bang - £*** gone! Yikes, that wasn’t meant to happen. How can a trip to PB be so expensive? Oh lord, that’s it now, I’ve blown it - hubby will never allow me to go again ha! I was SO tempted to stock up on wine, chocolate and naughty foods but I had to restrain myself. Partly because I want to do this properly and give my all to the centre, but mainly because a little part of me thought “what if they actually check your bags, frisk you, scan you, or – worse - you have to walk through a ‘naughty foods detector’ lol! What I did come out with, though, was four different bottles of shampoo and conditioner ffs. Is there any need for that? After all, I won’t be needing a damn drop of the stuff in a month or so. I wasn’t even hugely aware of my purchases (mindfulness at its greatest!) - just drawn to that aisle and, secretly, always on the look-out for the ‘perfect shampoo’, I went a little overboard. Must be a subconscious two fingers to C – and, hey, I can look forward to clean hair when it does decide to regrow! In the meantime, just try and take my squeaky clean, sparkling hair, you hideous disease you!
So, shopping out the way, shampoo in hand, still feeling apprehensive, anxious and a tad curious, I arrive at the centre to be shown to my room and settled in. Such a warm welcome - I literally felt wrapped in cotton wool almost straightaway. Ahhhhhhh. Then an absolutely delicious, nutritious dinner with ‘our group’ – twelve of us, including two husbands - followed by a guided relaxation and a cup of sleepy tea (or donkey piss, as Dad would call it!). Everything in place for a peaceful, undisturbed night’s sleep you would think – but, to my irritation, it didn’t happen. I awoke at 3.30am and struggled to go back to slumberland. My mind was too busy, almost excited. Excited about having this adventure on my own. Grrrrrr, too excited to sleep? How can that possibly be, in a cancer centre?
Bleary eyed, I surfaced the next day before breakfast for ‘mindful movement’. And it was well worth it too. I learnt some wonderful stretches and a mindful body scan, described as a way to get in touch with your body. The aim is to allow yourself to experience how different regions of your body feel, notice it and let it go. The session ended with a Qigong body tapping exercise – to get the ‘chi’ and blood flow to all the organs and extremities. I’m converted, felt quite exhilarated afterwards; ready to take on the world! We followed this with a scrummy breakfast – a feast. Think I managed to eat more than if I were on holiday… Eeek!
The rest of the day concentrated on the two components of the “Whole Person Model” - physical and spiritual health.
Physical Health:
Nutrition – more fascinating, mind boggling information to help us learn how to heal our bodies. There are various studies that report some people have improved disease progression and secondary recurrences by dietary changes. (Sorry, at this time I don’t have references as I managed to leave all my notes at PB – C brain!). If anything, I can surely see that C is going to make me healthier and more aware of the foods I eat. Not a bad thing really and already happening – but, can I just make this clear… my diet was really not that bad in the first place (although my Mum may disagree!). Ok, so we drink wine and eat white rice and pasta, chocolate, cake, salami (yep, love salami!)… but, on the flip side, I eat a tonne of vegetables (yes broccoli is on that list!), fruit, fish… ok, could up the fish and could also up the whole foods, but I know people with far worse diets! However, onwards for me and there are changes to be made, starting with upping my green tea consumption - discussed today. I read that it has been researched and, according to Japanese studies, to gain the anti-cancer properties in green tea, our daily consumption should be five cups (Anti Cancer – Dr David Servan-Schreiber). A work in progress…..I naively thought one cup a day would do the job!
At the mid-morning break, we were offered a juice. A lurid, green juice – that smelt as pungent as it looked. It was a ‘hold the nose and down the hatch’ job for me as I’m not very good with raw fennel - it’s the liquorice taste, I think. It sent a real shiver down the spine but I convinced myself it must be healthy… eugh.
Spiritual Health:
So, C has certainly knocked my sense of certainty and questioned my beliefs - therefore, I’m very open to all suggestions here, please….
We explore:
More mindfulness - eating, talking, listening.
Practicing ‘What do I want’, not ‘what should I do’.
Controlling negative influences.
Connecting with one’s true self and recharging the spirit with Meditation (focusing on breathing) – the idea is this has huge benefits to our immune systems. LOVED this! More please!
Surely at mid-afternoon break, it would be cake? I started daydreaming about the prospect but, no – we were served a big bowl of guacamole and rice/oat cakes. Don’t get me wrong, it was absolutely delicious and enough garlic to keep any vampire away that night, but I was seriously craving some sweetness at this point. So, my plan was to buy some ‘healthy’ chocolate from their shop. But, to my huge disappointment, the shop was closed (lack of volunteers for the day). Oh no. Desperate for a sugar rush (or as close as!), I snuck off to my room and rummaged frantically in my handbag, hurling out nappy cream, teething toy, nappy bags, lip salve, snack pot and so much more crap and then……right at the bottom……I found an old chocolate Santa lolly left over from Christmas. Gone, in a flash! For the first time in my life, I LOVE my mummy handbag and all its annoying contents!
The first day closed with some practical advice about finances – always welcome!
The evening was chilled – a meal and some time to myself, walking in their beautiful gardens, writing and reading. After the first day my mind felt clearer, I felt some focus developing and had a few strategies to take me forward. I was looking forward to the next day.
The meadow in the PB gardens
Luckily, the night had a little less turbulence – a spot of fan therapy to drown out the silence. You know when silence is really loud? Ridiculous, I know. I’d gone there for peace and quiet but it was just a little too quiet for me! And a little too hot! So, a hypnotic fan helped me to drift off….zzzzzzzz.
The second day was based around the other components of the whole person model:
Emotional and Psychological health.
These areas helped me understand how much I am still reeling after the shock, fear, anger and sadness of the initial diagnosis, surgery and ludicrous amount of decisions you are faced with on this journey. Such a huge impact on your mind, body, stress levels and immune system. Lots of talk on developing a low stress lifestyle, looking at what causes stress etc. (and trying not to get stressed about being stressed ha!) -
“It’s not about feeling better, it’s about getting better at feeling”.
Also, the impact of cancer on relationships - some people’s stories were just too much. Heart wrenching. Positive stories too though and I certainly had some to add to this. C has kindly highlighted to me what amazing, strong and loving family and friends I have (although didn't really need your help with this one C!).
We also explored our feelings around a sense of loss for our before C lives. Very hard and emotional and again made me realise just how much I want my old life back! - lots of discussion about getting back in control of our lives.
The day closed with an imagery journey and a mindful walk in their most stunning gardens. Very special, tranquil and nourishing for the soul. At the end of the course I was so, so glad I hadn’t turned around on the journey to PB. I feel truly enlightened and, yet again, have met some very special people with inspirational stories. It was a moving, memorable and fascinating experience that has armed me with lots of strategies to help climb my mountain and build my shield to fight this sickening disease. I’m starting to see C as a job - lord knows, I’m as busy as I would be at work with all the appointments etc. Being a C fighter has many different components and the main one I’m focusing on right now is taking good care of myself. It’s a huge, emotional and psychological journey and this course is helping me learn to be true to that and acknowledge the journey so far.
Friday 7 June 2013
Cornish cure
Thursday 27th May
More cancer kindness from the heart, in the form of a house in Cornwall for 4 days thanks to some old family friends, Paul and Gill. Mum, Sarah, Anna and David have made it all possible for Wayne and I to sneak off for a few days sans children. I am so grateful but equally sad that it comes under the shadow of C. However, an opportunity for us to have some time, to stand still and listen… to the peace and quiet, to the birds, to the sea, without interruption, yelling, shouting or pestering. An opportunity for me to rest, gain more strength and, most importantly to me, rekindle our love, which sadly has got lost, lost in this crazy unforgiving world of C.
Don’t get me wrong, it was hard to wave goodbye to happy little Lila, hard to drop Tilly off to stay with her buddies, big Edward and Megan, on the way but I knew this was right, right for us both and right for the children to gain a stronger mother. At first, it felt strange – no kids in the back of the car, no “are we there yet?” But we soon adjusted and I began to feel quite liberated at the thought of having some time with my husband, some time to myself. We arrived at the beautiful house overlooking the shimmering sea and I could instantly feel the tension being lifted away from my body. Such a healing place, so magical, so tranquil, like Enid Blyton meets Camomile Lawn. I love this place.
The next day, Saturday, little Tills arrived in the afternoon with A&D and we had a picture perfect picnic day on the beach. Bliss.
Despite now suffering from something called cording - Tight bands stretching down my arm and therefore unable to straighten the arm due to pain. Grrrrr (C world keeps on trucking, hey!) - Wound improving, soul truly nourished and longer lengths of time without C thoughts, I was ready to return home, ready to focus on the next steps – despite having to painfully prise ourselves away from the sunshine and scenery!
More cancer kindness from the heart, in the form of a house in Cornwall for 4 days thanks to some old family friends, Paul and Gill. Mum, Sarah, Anna and David have made it all possible for Wayne and I to sneak off for a few days sans children. I am so grateful but equally sad that it comes under the shadow of C. However, an opportunity for us to have some time, to stand still and listen… to the peace and quiet, to the birds, to the sea, without interruption, yelling, shouting or pestering. An opportunity for me to rest, gain more strength and, most importantly to me, rekindle our love, which sadly has got lost, lost in this crazy unforgiving world of C.
Don’t get me wrong, it was hard to wave goodbye to happy little Lila, hard to drop Tilly off to stay with her buddies, big Edward and Megan, on the way but I knew this was right, right for us both and right for the children to gain a stronger mother. At first, it felt strange – no kids in the back of the car, no “are we there yet?” But we soon adjusted and I began to feel quite liberated at the thought of having some time with my husband, some time to myself. We arrived at the beautiful house overlooking the shimmering sea and I could instantly feel the tension being lifted away from my body. Such a healing place, so magical, so tranquil, like Enid Blyton meets Camomile Lawn. I love this place.
View from house
Local National Trust beach
Evening in Porthscatho
The next day was glorious sunshine and awaking naturally without Lila’s yelling and Tilly’s footsteps was worth money. Priceless. Then followed a relaxed morning pottering, writing and sunbathing (the smell of sunscreen almost edible), watching the swallows darting back and forth, busy busy busy. Followed by a coastal walk into Porthscatho. Just delightful and mindful – at times! We pitched up on a beautiful beach on the way home and I took in the scenes, feeling quite smug watching all the families - toddler meltdowns, almighty amounts of paraphernalia, family squabbles and stressed parents. A few giggles to myself. Then, however, karma… .lying on my back in the most beautiful setting, looking up at the clouds, watching them effortlessly floating by and, lo and behold, I suddenly see the outline of my cancer from the ultra sound screen in the form of a cloud. ‘Lobulated’ is the word they used to describe its shape. What a horrible word. Damn you C, how dare you invade my peaceful space when I was doing so well at trying to forget about you. Am I not to see skies in the same way ever again? It is truly unbelievable how C can meddle with your daily life without any invitation. At times I've even seen signs for things beginning with C and read cancer when it actually said something completely different. Or I've misheard people saying a word as cancer when they said nothing of the sort. C, I officially hate you - you have permission to just DO one now, out of my life, far away!
Despite this, it was still a memorable day followed by an evening in St Mawes. Such a pretty, charming spot. A well-earned special night together - pint of beer and fish and chips!
The next day, Saturday, little Tills arrived in the afternoon with A&D and we had a picture perfect picnic day on the beach. Bliss.
Morning we left, Ooooo, Ahhhhh!
News Flash
Tuesday 28th May
Painkillers ceased on Saturday, stitches out today - we’re going solo with this one, baby! The only drawback is there’s still a great whole under my arm ffs. The wound is still gaping, like a black cavity. Apparently, the stitches had slipped and weren’t doing anything anyway. Sigh. However, it’s looking healthy and trying to knit together. Still unable to lift, though, so would be grateful if you would heal wound heal. I’m feeling stronger each day and have a sense of normality returning. In fact, I had my first ‘back to bc life’ day since the op. Hugely encouraging, if a little tiring! And for that reason I will share with you all a tune……..
http://www.youtube.com/watch?v=Uv_wZQJYlo0
Happy days.
Painkillers ceased on Saturday, stitches out today - we’re going solo with this one, baby! The only drawback is there’s still a great whole under my arm ffs. The wound is still gaping, like a black cavity. Apparently, the stitches had slipped and weren’t doing anything anyway. Sigh. However, it’s looking healthy and trying to knit together. Still unable to lift, though, so would be grateful if you would heal wound heal. I’m feeling stronger each day and have a sense of normality returning. In fact, I had my first ‘back to bc life’ day since the op. Hugely encouraging, if a little tiring! And for that reason I will share with you all a tune……..
http://www.youtube.com/watch?v=Uv_wZQJYlo0
Happy days.
Tuesday 4 June 2013
Penny Brohn
Tuesday 28th May
When I was diagnosed with cancer (saying that still makes me wince!), I was made aware of this cancer care centre. Their slogan is: “Helping you live well with the impact of cancer.” In a nutshell, they provide physical, emotional and spiritual support to help you at any stage of your illness – also known as the ‘Bristol Approach’.
At first, I didn’t even want to look at their website - something to do with denial, I’m sure. However, further down the line, I had a sneaky peak and decided to give it a go. What did we have to lose? And it feels better to be doing something positive rather than nothing. I just had to persuade Wayne to come too. Don’t get me wrong, he’s open minded, always up for learning and new experiences, but just not sure hanging out in a cancer centre would be his favourite pastime. You see, one of the amazing things about the centre is that it’s not only for the person diagnosed with cancer but also for anyone who is supporting or caring for someone who has it. SO it could be beneficial to partners, family and friends. I personally found this so refreshing. Not many places consider the carers in these situations.
So, with Wayne’s support we booked onto ‘A taste of the Bristol Approach’. Apprehensive and unsure what to expect, we turn up and are welcomed with avocado and berry juice. Mmmm, surprisingly delicious. We then meet the group and get a tour of the building. I’m not quite sure what I was expecting but I was pleasantly surprised at the size and opportunities: 28 bedrooms, a sanctuary, music room, art room, large dining room, beautiful gardens with different areas to explore, a library, treatment rooms and a shop – far too easy to rack up a huge bill! At one point, it was a little tough though – it’s hard to explain but, as soon as we walked into the sanctuary, I felt a spiritual wave overcome me and the tears began to fall… again. Composing myself, I carried on the tour but have no idea what brought it on - perhaps the stillness of the room, the spiritual books, who knows but I’m now prepared if I go back. Then, a warm drink. Don’t try and look for sugar or coffee, as there is nada! Coffee is substituted with barley extract (had to giggle for coffee loving Wayne) and sugar is substituted with Xylitol – Alex take note…..its ‘tooth-friendly’ hehe. However, there was an amazing array of herbal teas – including redbush, so that obviously passes the test! Phew.
Our group included three breast cancers, one ovarian, one lung, two rare types of cancer and three supporters. We were the youngest, with ages ranging up to a friendly, elderly couple - the wife was diagnosed with a rare form of cancer and her husband was there holding her hand. Very touching. The group seemed to be very touched by our story – I think when you add children everyone automatically feels sorry for you – and I was touched by everyone else’s story. Each person had their own struggle, their own story and their own way of coping. Very inspiring.
We then proceeded to have an overview of what the centre offered us. We were taken into a large sitting room with flowers, candles and circle of reclining chairs and footstools. Comfy and cosy – just my cup of tea. Starting with a relaxation journey, they even gave us blankets to snuggle up with. Needless to say Wayne was over the moon as he got horizontal again and proceeded to almost nod off. I looked over and tried not to giggle as he looked like he was in a cocoon. Just lovely.
We learnt about the history, about Penny Brohan, about making a difference to your wellbeing, tools to use and support available at the centre. All very interesting and useful knowledge but I’m starting to hate it when people talk about stress and its impact on your wellbeing. Has anyone with two young children tried to live in a stress-free environment? It’s surely impossible not to have some amount of stress with children – parenting has to be one of the most stressful jobs out there! So, I end up stressing myself out, thinking that my levels of stress are too high and I’m going to make my cancer worse. Stressed about being stressed. Ha, will have to work on this!
Lunch was watercress and spinach soup with wholemeal bread, followed by butternut squash fritata and three nutritious salads. Absolutely delicious. We both loved it. After lunch, it was time for a session on healthy eating and nutrition - all very interesting. Things we all know but that get lost in our hectic lives.
“Eating what stands on one leg (mushrooms and plant foods) is better than eating what stands on two legs (fowl), which is better than eating what stands on four legs (cows, pigs, and other mammals).”
Chinese Proverb – ‘Food Rules’ by Michael Pollan (great refreshing read for anyone interested)
In my humble opinion, the PB centre is an authentic, peaceful, safe environment that allows you to be yourself and nourishes you to the soul. One of the things I took away from today is: no matter how sad, low or desperate you are feeling, there is always someone else worse off – either lacking emotional or financial support, suffering side effects from treatment, experiencing relationship difficulties or struggling to cope with diagnosis and the day to day living with C. I know it’s all relative but other people’s stories are humbling. Equally, there is another side: you can gain strength, positivity and knowledge from other people’s stories and experiences. Today I have achieved that. Today I have had some of my lingering questions about treatment and the future with C answered – not all of them but it’s been a helpful insight.
Wayne equally enjoyed the day - however, I’m not sure how much he’ll use the centre. As he explains, if he gets some time off, he would rather be surfing, cycling etc rather than hanging in the Penny Brohan centre. We will see I guess. He took great interest in the fundraising though – after all, rather incredibly, this centre is a charity and all support, therapies and residential courses are free.
http://www.pennybrohncancercare.org/
C whisper: I am yet to read this so can’t offer my personal opinion but lots of people spoke very highly of this book at the centre:
‘What can I do to help’ by Deborah Hutton.
When I was diagnosed with cancer (saying that still makes me wince!), I was made aware of this cancer care centre. Their slogan is: “Helping you live well with the impact of cancer.” In a nutshell, they provide physical, emotional and spiritual support to help you at any stage of your illness – also known as the ‘Bristol Approach’.
At first, I didn’t even want to look at their website - something to do with denial, I’m sure. However, further down the line, I had a sneaky peak and decided to give it a go. What did we have to lose? And it feels better to be doing something positive rather than nothing. I just had to persuade Wayne to come too. Don’t get me wrong, he’s open minded, always up for learning and new experiences, but just not sure hanging out in a cancer centre would be his favourite pastime. You see, one of the amazing things about the centre is that it’s not only for the person diagnosed with cancer but also for anyone who is supporting or caring for someone who has it. SO it could be beneficial to partners, family and friends. I personally found this so refreshing. Not many places consider the carers in these situations.
So, with Wayne’s support we booked onto ‘A taste of the Bristol Approach’. Apprehensive and unsure what to expect, we turn up and are welcomed with avocado and berry juice. Mmmm, surprisingly delicious. We then meet the group and get a tour of the building. I’m not quite sure what I was expecting but I was pleasantly surprised at the size and opportunities: 28 bedrooms, a sanctuary, music room, art room, large dining room, beautiful gardens with different areas to explore, a library, treatment rooms and a shop – far too easy to rack up a huge bill! At one point, it was a little tough though – it’s hard to explain but, as soon as we walked into the sanctuary, I felt a spiritual wave overcome me and the tears began to fall… again. Composing myself, I carried on the tour but have no idea what brought it on - perhaps the stillness of the room, the spiritual books, who knows but I’m now prepared if I go back. Then, a warm drink. Don’t try and look for sugar or coffee, as there is nada! Coffee is substituted with barley extract (had to giggle for coffee loving Wayne) and sugar is substituted with Xylitol – Alex take note…..its ‘tooth-friendly’ hehe. However, there was an amazing array of herbal teas – including redbush, so that obviously passes the test! Phew.
Our group included three breast cancers, one ovarian, one lung, two rare types of cancer and three supporters. We were the youngest, with ages ranging up to a friendly, elderly couple - the wife was diagnosed with a rare form of cancer and her husband was there holding her hand. Very touching. The group seemed to be very touched by our story – I think when you add children everyone automatically feels sorry for you – and I was touched by everyone else’s story. Each person had their own struggle, their own story and their own way of coping. Very inspiring.
We then proceeded to have an overview of what the centre offered us. We were taken into a large sitting room with flowers, candles and circle of reclining chairs and footstools. Comfy and cosy – just my cup of tea. Starting with a relaxation journey, they even gave us blankets to snuggle up with. Needless to say Wayne was over the moon as he got horizontal again and proceeded to almost nod off. I looked over and tried not to giggle as he looked like he was in a cocoon. Just lovely.
We learnt about the history, about Penny Brohan, about making a difference to your wellbeing, tools to use and support available at the centre. All very interesting and useful knowledge but I’m starting to hate it when people talk about stress and its impact on your wellbeing. Has anyone with two young children tried to live in a stress-free environment? It’s surely impossible not to have some amount of stress with children – parenting has to be one of the most stressful jobs out there! So, I end up stressing myself out, thinking that my levels of stress are too high and I’m going to make my cancer worse. Stressed about being stressed. Ha, will have to work on this!
Lunch was watercress and spinach soup with wholemeal bread, followed by butternut squash fritata and three nutritious salads. Absolutely delicious. We both loved it. After lunch, it was time for a session on healthy eating and nutrition - all very interesting. Things we all know but that get lost in our hectic lives.
“Eating what stands on one leg (mushrooms and plant foods) is better than eating what stands on two legs (fowl), which is better than eating what stands on four legs (cows, pigs, and other mammals).”
Chinese Proverb – ‘Food Rules’ by Michael Pollan (great refreshing read for anyone interested)
In my humble opinion, the PB centre is an authentic, peaceful, safe environment that allows you to be yourself and nourishes you to the soul. One of the things I took away from today is: no matter how sad, low or desperate you are feeling, there is always someone else worse off – either lacking emotional or financial support, suffering side effects from treatment, experiencing relationship difficulties or struggling to cope with diagnosis and the day to day living with C. I know it’s all relative but other people’s stories are humbling. Equally, there is another side: you can gain strength, positivity and knowledge from other people’s stories and experiences. Today I have achieved that. Today I have had some of my lingering questions about treatment and the future with C answered – not all of them but it’s been a helpful insight.
Wayne equally enjoyed the day - however, I’m not sure how much he’ll use the centre. As he explains, if he gets some time off, he would rather be surfing, cycling etc rather than hanging in the Penny Brohan centre. We will see I guess. He took great interest in the fundraising though – after all, rather incredibly, this centre is a charity and all support, therapies and residential courses are free.
http://www.pennybrohncancercare.org/
C whisper: I am yet to read this so can’t offer my personal opinion but lots of people spoke very highly of this book at the centre:
‘What can I do to help’ by Deborah Hutton.
Neeps and Tatties
Saturday 18th May
Against all odds and an absolutely hideous journey (would like this memory to fade please) – 4am start, Lila vomiting in the night and providing 2 unspeakable nappies on the journey, requiring a full change of clothing (anyone travelled Easyjet with children knows this is NOT easy!), Tilly being sick on landing (great, taking after Mummy with airsickness) – WE MADE IT TO SCOTLAND. Hip hip. Seriously, what the hell was I thinking booking early morning flights? There was some rationale behind my thoughts – something to do with having a day in Edinburgh, which obviously wasn't practical anymore! Never, ever again.
So, just to set the scene, Scotland was a BC (before cancer - not children ha!) arranged holiday with some wonderful friends: the lovely Joynson family, Anna, Lee, Ed and Sal. We had been so excited about this for a long time (even though we had to do the walk of shame to the headmistresses office to get permission to take Tilly out of school - naughty naughty!), especially Wayne. He has a deep love of Scotland, despite only being there once which resulted in a wedding proposal at the top of the Cairngorms. A truly special memory and at this time he fell in love with the scenery, countryside and space. Jane and Jed had rented a house – Balbegno Castle - in Kincardineshire for us all so special times were ahead. Then C dared to come along and spoilt everything! However, despite not wanting to go at the time of diagnosis, I soon realised this was so important for Wayne and Tilly, who was equally excited, and would be beneficial for us all to have a change of scenery and time with close friends. As my sister said – “I’m going to drive you to the airport if it means you get on that flight.” I’m just hugely sad that C had to come along and I was not in full health to enjoy the splendor of Balbegno and surrounding areas. Equally though, so grateful for the experience.
To be honest, I can’t really tell you much about the first couple of days of the holiday except that the house was absolutely beautiful and we managed a lovely day at St Cyrus beach. Miles of beautiful sand, driftwood, birds and beautiful backdrops and hardly a soul to be seen.
The rest of the week went a little like this:
Beautiful morning walks with Lila into the local village of Fettercairn on a paper run, skylarks singing along side as the rape flowers blew in the wind. So lucky with the weather, the odd shower (and snow for those in the mountains) but, all in all, sunny and fresh.
A fab evening out in the local pub.
Hilarious game of bird bingo – yey to Sal and I for winning.
And many fun evening meals, thanks to Sal who cooked for us nearly every night, chatter natters, Guy’s guitar, and lovely roaring fires.
But, most importantly to me……(to the tune of twelve days of Christmas) On the fourth day in Scotland my war wound said to me…………..I’m going to stop leaking and give you a break. Hooray, hoorah. The relief was enormous, although I was a little anxious it was going to start again. I even managed my first shower (had been managing with shallow baths) since the op and a proper hair wash. Simple things, you see, but an unbelievable step to boost morale. Do I dare decide to finally take the dressings off? I plucked up the courage and decided this was a good time to examine both wounds, shape of boob and see what the damage is. Surprisingly pleased with the lump and tissue removal wound, although quite shocked at the size. The surgeon’s have been very neat though and there doesn’t seem to be any disfiguration. Hey, in the grand scheme of things at least I’ve still got it (so enormously grateful)………….at this point. The lymph removal wound is a little more, shall I say, gory. Right up in the armpit, the stitches seem to be ok but the wound is still gaping slightly. It appears to be trying to heal though. For some reason this wound makes me feel squeamish and I don’t particularly like looking at it. However, I manage to take the dressing off and get some air to it for the day. I’m still struggling to lift my arm somewhat but carrying out my exercises religiously to keep from stiffening. Feeling more confident, I tried to reduce the pain relief at this point but it became a little too much as the real feeling came back to my arm, which was not pleasant. The numbness from shoulder blade to elbow is troubling and the whole arm seems to be hypersensitive to touch, temperature etc so I decide to carry on with them for a few more days. Sigh.
In the end, despite the odds being stacked against us, we all managed to have a wonderful time and I’m so pleased that we made it. I’m so grateful to everyone for helping us and making the holiday possible, Jed for the C chats, Jane for being the fairy godmother, Sal and Anna for all your help with the children – Lila certainly got to know her godmothers during this time - Guy and Lee for being themselves and the most chilled out people I know, and Eddy for being Tilly’s special playmate. Team Balbegno! When can we go back?
http://www.pedlars.co.uk/balbegno_castle/
C whisper: One of the side effects of lymph node surgery is Lymphoedema. This is the build-up of fluid in the soft tissue causing swelling in the arm and fingers. Believe you me, when they give you all the information about this before surgery it seriously frightens the life out of you. I am at risk for life and, if you do unfortunately get it, it lasts for life. Scared! They give you an overwhelmingly long list of things to carry out as prevention, mainly reducing the risk of infection to your ‘at risk’ arm as well as exercise, avoiding sunburn, and avoiding deep tissue massage………. One of the things they advise is to avoid using a razor for underarm hair removal – an electric razor is safest. So, my point is, if you know you are having this surgery, perhaps it would be a good idea to think about this in advance. I was not quite organised enough to do anything about it! Also, the area is completely numb so waxing would be ideal – no pain at all – but that’s also not advised due to damage to the skin. Perhaps I’ll just wait for the chemo to kick in – chemo benefits ha! Something else that has been invaluable – simple things again - are wet wipes, especially lavender scented ones hehe. Thanks Mum. So handy for underarm washes whilst you can’t soak in bath/shower. Oh, it’s all so pleasant isn’t it! What has happened to my life? I never dreamed I’d be writing about underarm hair and personal hygiene!
Against all odds and an absolutely hideous journey (would like this memory to fade please) – 4am start, Lila vomiting in the night and providing 2 unspeakable nappies on the journey, requiring a full change of clothing (anyone travelled Easyjet with children knows this is NOT easy!), Tilly being sick on landing (great, taking after Mummy with airsickness) – WE MADE IT TO SCOTLAND. Hip hip. Seriously, what the hell was I thinking booking early morning flights? There was some rationale behind my thoughts – something to do with having a day in Edinburgh, which obviously wasn't practical anymore! Never, ever again.
So, just to set the scene, Scotland was a BC (before cancer - not children ha!) arranged holiday with some wonderful friends: the lovely Joynson family, Anna, Lee, Ed and Sal. We had been so excited about this for a long time (even though we had to do the walk of shame to the headmistresses office to get permission to take Tilly out of school - naughty naughty!), especially Wayne. He has a deep love of Scotland, despite only being there once which resulted in a wedding proposal at the top of the Cairngorms. A truly special memory and at this time he fell in love with the scenery, countryside and space. Jane and Jed had rented a house – Balbegno Castle - in Kincardineshire for us all so special times were ahead. Then C dared to come along and spoilt everything! However, despite not wanting to go at the time of diagnosis, I soon realised this was so important for Wayne and Tilly, who was equally excited, and would be beneficial for us all to have a change of scenery and time with close friends. As my sister said – “I’m going to drive you to the airport if it means you get on that flight.” I’m just hugely sad that C had to come along and I was not in full health to enjoy the splendor of Balbegno and surrounding areas. Equally though, so grateful for the experience.
Balbegno in all its glory.
To be honest, I can’t really tell you much about the first couple of days of the holiday except that the house was absolutely beautiful and we managed a lovely day at St Cyrus beach. Miles of beautiful sand, driftwood, birds and beautiful backdrops and hardly a soul to be seen.
Other than that, it’s a bit of a blur. On arrival I felt like a casualty of sorts. The events of the week had drained every ounce of life from me and I was beginning to sink. Added to this, Lila decided not to sleep for first two nights - ffs. In hindsight, I think it was the closest I've ever come to some sort of breakdown, physically and emotionally – seriously delirious and, for the first time, officially broken by C! The sheer exhaustion was a huge part to play. Luckily, the cavalry took over and I was able to rest. It was a hard decision as I hate missing out on things, especially on holiday, but I knew if I was going to regain my strength it was vital. So, by about Wednesday, I had been brought back from brinks of despair and was feeling a little stronger and able to re-start the holiday. Meanwhile, the troops had had a ball visiting castles, villages and having delicious lunches! Now it was time to send Wayne off for a bit of respite. First to the highlands with Jed for a wilderness climb, then to the local Fettercairn distillery = happy husband. Hooray.
The rest of the week went a little like this:
Beautiful morning walks with Lila into the local village of Fettercairn on a paper run, skylarks singing along side as the rape flowers blew in the wind. So lucky with the weather, the odd shower (and snow for those in the mountains) but, all in all, sunny and fresh.
A fab evening out in the local pub.
Hilarious game of bird bingo – yey to Sal and I for winning.
And many fun evening meals, thanks to Sal who cooked for us nearly every night, chatter natters, Guy’s guitar, and lovely roaring fires.
But, most importantly to me……(to the tune of twelve days of Christmas) On the fourth day in Scotland my war wound said to me…………..I’m going to stop leaking and give you a break. Hooray, hoorah. The relief was enormous, although I was a little anxious it was going to start again. I even managed my first shower (had been managing with shallow baths) since the op and a proper hair wash. Simple things, you see, but an unbelievable step to boost morale. Do I dare decide to finally take the dressings off? I plucked up the courage and decided this was a good time to examine both wounds, shape of boob and see what the damage is. Surprisingly pleased with the lump and tissue removal wound, although quite shocked at the size. The surgeon’s have been very neat though and there doesn’t seem to be any disfiguration. Hey, in the grand scheme of things at least I’ve still got it (so enormously grateful)………….at this point. The lymph removal wound is a little more, shall I say, gory. Right up in the armpit, the stitches seem to be ok but the wound is still gaping slightly. It appears to be trying to heal though. For some reason this wound makes me feel squeamish and I don’t particularly like looking at it. However, I manage to take the dressing off and get some air to it for the day. I’m still struggling to lift my arm somewhat but carrying out my exercises religiously to keep from stiffening. Feeling more confident, I tried to reduce the pain relief at this point but it became a little too much as the real feeling came back to my arm, which was not pleasant. The numbness from shoulder blade to elbow is troubling and the whole arm seems to be hypersensitive to touch, temperature etc so I decide to carry on with them for a few more days. Sigh.
In the end, despite the odds being stacked against us, we all managed to have a wonderful time and I’m so pleased that we made it. I’m so grateful to everyone for helping us and making the holiday possible, Jed for the C chats, Jane for being the fairy godmother, Sal and Anna for all your help with the children – Lila certainly got to know her godmothers during this time - Guy and Lee for being themselves and the most chilled out people I know, and Eddy for being Tilly’s special playmate. Team Balbegno! When can we go back?
http://www.pedlars.co.uk/balbegno_castle/
The Great Hall
Princess Lila
C whisper: One of the side effects of lymph node surgery is Lymphoedema. This is the build-up of fluid in the soft tissue causing swelling in the arm and fingers. Believe you me, when they give you all the information about this before surgery it seriously frightens the life out of you. I am at risk for life and, if you do unfortunately get it, it lasts for life. Scared! They give you an overwhelmingly long list of things to carry out as prevention, mainly reducing the risk of infection to your ‘at risk’ arm as well as exercise, avoiding sunburn, and avoiding deep tissue massage………. One of the things they advise is to avoid using a razor for underarm hair removal – an electric razor is safest. So, my point is, if you know you are having this surgery, perhaps it would be a good idea to think about this in advance. I was not quite organised enough to do anything about it! Also, the area is completely numb so waxing would be ideal – no pain at all – but that’s also not advised due to damage to the skin. Perhaps I’ll just wait for the chemo to kick in – chemo benefits ha! Something else that has been invaluable – simple things again - are wet wipes, especially lavender scented ones hehe. Thanks Mum. So handy for underarm washes whilst you can’t soak in bath/shower. Oh, it’s all so pleasant isn’t it! What has happened to my life? I never dreamed I’d be writing about underarm hair and personal hygiene!
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