Rhythm of Life

26/06/2014

A week off from chemo and work has done me the world of good. The clutter has gone from my head and I feel like I have the 'zing' back. This will aid me in moving forward onto the final four chemos I'm sure.

This week has been about recuperating so when I have felt like rest/sleep, I have done just that. I might have got up at 9 and been back in bed at 11, up at 1 and then back at 5. If that is what the body is telling me then I have listened. It is so good to take the foot off the pedal (I am known for having a 'lead foot') and just go cruise mode.

The fall out from chemo last week is that I have ended up with mouth ulcers and diarrhea. Trying out baking soda for the mouth ulcers. A friend brought round aloe vera juice and that has certainly calmed down the digestive rumblings. Great thinking Ann!

It often goes through my mind how do people in war ravished countries, with lack of food and medical intervention, cope with cancer, or children who can't understand or describe their sickness, their pain. I am in such a privileged position to be in a country where everything is at my disposal to get me through this. To not have peace around me, to imagine hearing a bomb going off just over the other side of town, to not have food or water; I do wonder how I drew the lucky straw to be in NZ.

I'm thinking that in the back of your mind you may have a question about sex/intimacy. Don't worry, I'm not about to divulge anything about our sex life, but I think it is something to be educated about as when I had a query I rang our cancer medical team who had no idea and had never been asked the question put to them before. Does that mean people don't have sex while on chemo or are they too afraid to ask the question. So I had to consult Dr Google and came up with the following:

"It is not known for sure whether or not there is a risk that chemotherapy drugs can be passed on through semen or secretions from the vagina. But it has been suggested that chemotherapy can get into vaginal fluids. Because of this doctors advise people to use a barrier method of contraception, such as condoms, if you have intercourse while you are having chemotherapy treatment.

This advice is only for the time you are actually having the treatment and for about a week after your treatment. After this time any chemotherapy will have left your body. The advice is the same for oral sex and intimate kissing, where body fluids pass between people. This advice is the same whether it is the man or the woman being treated".

Of course it's not just sex but intimacy that is essential to stay connected. 

So:

• to have a blanket placed over me when I am resting on the couch 
• to have a candle lit bath run for me
• to drop everything and get my latest craving
• to play and sing to me while I rest and let the tears flow
• to take my hand, place a kiss and say "I love you my bald frog"

I couldn't ask for more from this husband of mine. He has "manned up", taken care of me unconditionally and is here for me 120%. I know I am truly loved and blessed.

I am hopeless at reading the bible and understanding what is being said. But this week I opened my bible and said right, I'm listening Lord, tell me what you want me to hear:
Jeremiah 31:3-4 "I have loved you with an everlasting love, I have drawn you with loving-kindness, I will build you up again and you will be rebuilt. Again you will take your tambourines and go out to dance with the joyful". The theologians amongst us will have the real interpretation behind this, but to me it spoke volumes.

This week I believe I am being rebuilt and I am going out to dance again and be joyful.

Thanks this week:

My angel neighbour - Grab One Taupo Coffee Plus vouchers

Colleagues arrived with Chelsea bun - mission accomplished
Ex colleague offer of holiday Waihi
Acquaintance - trout
Friend - wool, aloe vera juices, muffins

Knitting for the premature born
babies at Rotorua Hospital

Recuperation Time

21/06/2014

Yesterday I put up a blog for about an hour then took it down. I decided it wasn't really sharing the reason that I post, it is the hope my ramblings keeps you up to date with how I am travelling and also may give you an insight into how it may be for someone you know. Literature has told me everyone who gets diagnosed with BC has a different experience, which is a shame because all I wanted to know initially was what to expect. Any way it is what it is...

This week I had round 2 of the 2 week cycle. I now have 2 weeks off - yay! The procedure went to plan - more than I can say for my mate in the next chair - but we both survived to walk out and carry on another day.

My pre-meds have gone from 7 down to 3. My steroids have reduced down to only the one the following day. The 'lump of concrete' in my stomach has gotten smaller and dissipated quicker. Once again the cravings kicked in: florentine and chocolate milk shakes, and I'm eating like a horse and to be honest I'm just going with it. Least of my worries at the moment. So everything is getting lighter as we head to the chemo finish line.

And I am also taking time out to recuperate. I know many of you have wanted me to take better care of myself. I read an article this week that spoke loud and clear about recuperating, convalescing and rehabilitation. So I am embracing the first one. After six months of being in the BC world, I admit I have now crashed and burned, and I am having a holiday from work, cancer and chemo for two weeks. Wayne has a week off also, as he is riding this roller coaster with me, and he is in dire need of a break. We have no plans to go anywhere, just hang out together and blob.

So, all in all, a pretty easy week this week for me.

Round 6

20/06/2014

It's now 12.50pm and I am sitting here in my dressing gown. I have 'Stop Making Sense' (Talking Heads) blasting away and right now I am in a state of 'bliss'. 'Spotify' is a great app.

This week I came across an article entitled 'After the treatment finishes - then what' by Dr Peter Harvey. It came along at just the time.

You see this week I realised I was crashing big time. It's been coming. Six months of cancer-work-chemo-work-chemo was finally catching up and something had to change.

In his article he speaks of recuperation, convalescence and rehabilitation and I realised from this article that I wasn't giving my body time to recuperate by just pushing on through and working from one chemo appointment to the next. As much as it was a necessity to keep enough leave up my sleeve, it was now taking its toll.

Another verse I came across this week - "You who have received so much love, show your love by protecting the sacredness of life". To me that made me sit up and think about all the love and kindness shown toward me (and Wayne). Why am I not meeting you guys half way at least. I have so many out there praying for me, being positive about my outcome and I suddenly felt like I have been letting you down by not looking after myself. I have been letting you do all the work while I "paid the bills".

Through an absolute act of kindness from my three typist work colleagues in Tauranga, they offered me a life line this week which has enabled me to take some time out now without worrying that I am going to run out of leave and then financially be in the crap which doesn't aid to healthy mind or body and to do some recuperation time.

You see there is no pressure right at this moment to do anything but 'BE'. I have no expectation of myself of getting out there and putting on that brave face. I can just sit here all day if I want and not even think about cancer. This is 'bliss' for a few hours.

This week was round 2 of the two week cycle. I now have two weeks off. I actually cut back on the after chemo anti nausea meds and feeling a lot better for it. By that I mean I halved the dosage. Steroids were only for one day this week. I still had the cravings - Florentine and chocolate milk shake. Yep, it's like being pregnant. I bounced off the walls on Wednesday, and then have slowed down from there. I have started knitting again, something for the premature babies in hospital, and thoroughly enjoying the click-click-click of the needles.

So with another week to go on leave, I can start to rebuild for the next 4 chemos and then line up that mountainous 5 weeks in Hamilton. To say I'm not excited about a 5 week stay in a beautiful lodge, even though it has happy hour every night, is an understatement. Not sure how I am going to emotionally hold on without Wayne at my side. But I best not get too far ahead of myself and just 'BE' right now.

This week's thank you:

Dale, Sally and Jenny - your unselfish LSL contribution
Colleague made shepherd pie for dinner - yum
Friend- fish pie on chemo night - just what I needed
Coffee Plus Cafe - Florentine craving
Prayer warriors - continued diligence and steadfast in prayer

Blessings...

Round 5

14/06/2014

Pinot Gris - guided by my recent consumption of this nice wine on a Friday night at 'The Vine', I have rather enjoyed its lighter notes. I am no wine expert but I have developed a good palate for it. So when my 4x 'Cosmopolitan' pink chemo cocktail finished, I was quite hoping the 'lighter' one the medical team promised me would be just like a Pinot Gris: light, easy to drink/handle, delicate. Well, hello...

I do tend to forget that they are actually putting poison into me. I don't think I have mentioned before but when the nurse gets prepared to administer the chemo, they put on drapes and gloves and cover everything they can to prevent any of the poison getting loose on their bodily parts. A little disconcerting, but we have to remember what we are dealing with here. Kill off the bad cells (and the good cells) and hopefully the good cells will bounce back soon enough. Did you know chemo came about because of mustard gas back in WWII? Google it!

So...5 down, 5 to go! Really? I did cringe today when I met a lady in town who happily said "Oh well you are half way there, that's great and if you get 5 years remission, count your lucky stars". Sorry, but I promptly said under my breath "F... off, you sit here and be excited about that mountain to climb". Sorry if that sounds ungracious, but that's my head space today. It hasn't been the best couple of days. I know people mean well but sometimes just a hug will really suffice. I know my reality only too well.

Tuesday came with the new administering of two new drugs 'M' and 'F' through two syringes and then the infusion (drip bag) of the 'C'. Still took about the same length of time at the chemo unit.

Then home and in kicked the steroids and anti nausea drugs. I was up at 2am craving for toast and peanut butter and I had to have it. The brain would not switch off so read a comical book about a man and his donkey on the pilgrim way to Santiago "Spanish Steps" till the late hours of the morning. Of particular interest as my brother and wife cycled this route last year. Thanks Anna Bixley for that recommendation.

Next day sleep. Thank goodness no 'lump of concrete' in the stomach.

Thursday I worked and to my detriment. I am really going to have to work out what hours I can work so that the body won't react and object. I love my job and want to be there so that is not the issue. The issue is working around how much sick leave and annual leave I need to save up to get through all the treatment, and getting time to physically get well through convalescing and recuperating. At the moment I have no time to.

Friday I crashed and burned big time. Lasted an hour at work and then fell in a heap. I got home and Wayne just held me while I cried and cried until I could cry no more and then I slept. Wayne was worried about leaving me so my lovely cousin Lynn came and kept me company to make sure I didn't spin out on my own.

A lot of you will know I am an emotional soul, tend to wear it all on my sleeve, well this is turning into quite a task to get back on track. The medical staff have suggested I speak with a cancer counsellor and I can't see it doing any harm so am booked in for a chat.

In the meantime I grab my moments. Today we celebrate our wedding anniversary and the highlight is going to be watching the All Blacks play England - that's why Wayne loves me, he says, because I love rugby and cricket. No dinner out or a night away as I had so wanted to plan a few weeks ago, just in case I'm not here next year. I wanted to create a memory. But the memory I have created for Wayne is of us sitting on the couch watching rugby, two lovebirds celebrating 16 years marriage, and high 5-ing when we score. That will suffice today.

Thank you this week to:
Taken out for dinner out last Sunday
Prayers chemo day
Massage pre chemo

Aniversary Coffee Plus lunch today
Cousin hanging out with me at the end of a working week
Mum sending anniversary flowers

Live in the moment

08/06/2014

As I sat down outside Whitcoulls to eat my lunch and watch the world go by, our local busker started playing and he sang straight to my heart strings; a good ole Ronan Keating number "When you say nothing at all", Van Morrison "Have I told you lately that I love you", Eric Clapton "You look wonderful tonight". It was a concert for one because no one else was sitting out in the cold.

A concert for one

It's about "living in the moment". I have read and heard that phrase in a few articles I have read this week as I try to lift myself up. Easy to say and I am finding harder to do as the energy levels go up and down.

When I first got diagnosed I know I did that - lived in the moment - everything took on a brighter, crisper meaning and I was reflective of all the love and kindness around me. Wayne and I are still overwhelmed how the kindness keeps on coming and my friends and family keep on giving.

This week my "living in the moment" was having my son home. We went to our favourite cafe, Coffee Plus, and Luke says "So Mum, how's life"? Love it! We talked about life, death, mortality, future dreams, love and faith, over coffee and cake. Nothing like a deep and meaningful moment created right there. It warms my heart to hear Luke speak with his words of wisdom, compassion, gentle spirit and hope. He has a lot to contribute to this world and with Christine by his side, they will make a difference in people's lives.

A reduction in pre meds had me wondering.
Note no wig - soon gave up and accepted
how I looked

I also had a visit from a dear friend who asked me "what is it like this cancer, what is treatment like, what's the future hold". When I started to answer I realised how much I have learnt and am learning about the cancer, the process, my reality and myself.

This week has been an "up" week in terms of treatment and I started to feel physically more like my old self. And then in crept the awareness that next week a new chemo treatment is starting (CMF). This is the lighter dose (my Pinot Gris) and it should be easier on my peripheral neuropathy (I have in my feet) - Dr Link promised me. I have treatment on Tuesday and then seven days later another dose with a two week gap.

I have to admit there is a bit of trepidation with the new regime, just because it is that, new. I am yet to find out if the rest will be administered the same.

Wayne made the observation to me this week that with each one I have reacted differently, both physically and emotionally, and on reflection he is right:

1. Pretty damn easy. Back at work the next day
2. Stopped drinking as taste buds went and nothing tasted right so didn't flush chemo out effectively hence tired, nauseous
3. Steroid high - hide the knives (still haven't found them so I must have done something with them)
4. Tired, over it, "stop all the clocks, cut off the telephone" - WH Auden

a dose of the munchies

The aftermath of chemo for me:

• is the nausea is like being pregnant so to combat that eat dry crackers little and often, gingernuts and ginger tea
• I feel like I have got a lump of concrete working its way down through my body for about five days - when it is "released" oh the relief!
• major stomach spasms which are like Braxton Hicks and I just have to wait for them to pass
• my nose has ulcers up inside (the hairs have gone) so nose is very tender
• steroids and sleep do not go well together

So off we go again - are you coming along for the ride?? Let's see what we make of this next process.

Acts of kindness and big thank yous this week - I am truly blessed:

• bus ticket for Luke
• The Eagles ticket
• Lunch out
• Cash to help create and reflect on a memory
• Friend visit and chocolate cake
• Friend visit and something "yellow"
• Cousin - dinner at Siam Thai and a pretty pink cyclamen

Living in the moment and watching fishermen
spending time with Wayne and being close to water

I'm over it

03/06/2014

Okay so I've been quiet on the blog front lately. That's because you won't like where my head is at the moment. I don't either but I have to learn to live with it and make some sense of it.

Midnight munchies

Since chemo 10 days ago I have cried every day. I realise that

• I am tired of being tired
• I am sad
• I am questioning the 'why' and 'what's the point'
• I am tired of being positive and putting on the stiff upper lip
• I want to give up
• I want to get in the car and drive forever

I came to the conclusion that if it is my time to go then:

• Wayne and Luke and Christine will have financial issues sorted for a few years
• Wayne can give up BP and play/teach guitar again
• I have done what I wanted to do in my life - been a valuable employee, had some great jobs and my dream job 
• Met beautiful interesting people - and a few crazies on the way 
• I have raised our son to be a kind, compassionate, caring and loving man who has married a wonderful beautiful intelligent woman
• I have travelled and basically led a pretty fun filled life
• I have made a difference in some people's lives whether they are aware of it or not

So as I sat here on the couch every night for the last 10 days contemplating what next, I suddenly had this overwhelming urge last night - I wanted to see my nieces - Sarah Hemsley Naomi McRae Miriam Tuck Hannah Hemsley, Justine Harwood Rebecca Patel Julia Osborne.

It is interesting to read on Facebook the love they are now sharing and showing for their siblings children and I wonder do they remember my love I had for them as youngsters.

I remember being there to share kindy, school, events. I have a video of Miriam dancing as a 5 year old at my wedding. Will she get to show that to her daughter Eden one day. Bren is into soccer and scoring goals (like Luke did) - a little star, Mila has her girlie fashion sense going on, Lachie, so cheeky and gorgeous, Owen - just starting out in life, Cameron - sure to be our surfie dude.

Do they remember the family dinners, Christmases, gatherings, Pops and his murphys (potatoes), the laughter and the playing of swingball and badminton out in the backyard. Nana's amazing love for them. Going to school functions, kindy, ballet practice...do they remember any of this with Aunty Andy? I hope so because this has kept me going this week.

I do feel alone and isolated and part of that is my doing. Normal isn't my normal anymore. Others lives go on but mine has taken a different course and I am pushing people away because I know you can only hear it all for a certain time period.
"You'll be fine" is wearing thin. "How do you know that" I scream from deep inside. "Stay positive" - you can only do it for so long and then what?

I know God is with me, I have no doubt, I am not alone spiritually in any of this. I have amazing loyal consistent prayer warriors praying daily for me.

But I'm scared, frightened, overwhelmed and pissed off that this is happening and I have no control over anything anymore - zilch, zero, nothing.

This week a friend asked "What do you need from us"? I have thought long and hard and I have still no idea today but it is a true and honest question.

I told you it wasn't going to be a happy post. But it's out there now. This is where I am at and maybe now you will understand a little of why I am distant, removed, lost in thoughts and tears and just generally over it.