The year of Living dangerously part 2

As you can tell, I (or at least my body is) am prepared to go to great lengths to get attention. But after DH left I curled up around my pain, with a cold cloth on my forehead and thought. Then I prayed. Then I thought some more and decided, that if I could have anything I wanted right then it would be a warm bath, a back rub and clean PJ"s. God's quick response was to send in every mother's dream of a daughter. 20-something young Nurse Steph, had the no-nonsense air of a good nurse who will not allow anyone on her watch to suffer anymore than absolutely necessary. I told her my wish. She had just come on shift, and I think had not mentally got into nurse mode yet, but I watched resolve take over her expression and she rushed out saying she'd be back soon. Dr Alison walked in, about to go off shift. She explained that Mr D had been consulted and he would be in to see me asap. I thanked her (and silently God) for her decision to do the scan - it would have been so easy for her to just diagnose me with reaction to chemo, and we would never have known there was a lump in my head. ( Or is it, the 'breast in my brain"?)

Back in comes young Steph, with bowls of water, towels and flannels. She removes the press studs and wires, and my top. "Wow! great scar! will you have breast reconstruction?" No I started to say, but she hammered on - you should! now's your chance to have great big boobies (accompanied by hand gestures) and run off to Hugh Heffner!" She started to cover me with the warm soapy towel, and rub my arms. "Just think - I'll see you with your big chest on TV in Hugh's mansion, and I'll be able to say 'I knew her when she was pretending to be a family woman!" Peals of laughter from both of us - silence now from the booth next door where an elderly man was in with a suspected heart attack.

A thorough and invigorating rub of my back and on to my lower half. "Why you don't look your age at all! You're like a newborn babe!" More laughter indeed I do look so these days. A great foot rub, clean underwear from a hastily packed bag by DH and into a hospital gown. I felt much better, and told that sweet girl she was an excellent nurse. Off she went with her head up high.

A short while later Steph and the other kindly nurse came to tell me I was to be taken to the emergency ward to wait for the surgeon. The plan was that I would be removed to the Royal H Hospital for brain surgery , and then brought back to C (private Catholic hospital) for recovery. They wheeled me across the narrow passage and into the ward. They would still be my nurses until I was moved. The ward was very clean and pretty, and they made up a bed for me with lighthearted banter. They settled me into the bed and covered me up. I could watch TV and call them for anything! I lay there and cried, and cried. I listened to another patient gossiping and another complaining about the cost of the privilege of being in this caring, beautiful environment. A man came in and asked me to sign a form. He must have told Steph I was crying because back she came, and spoke kindly to me. "Wouldn't it be great if we could have a spare body that's in pefect working order?' She spoke about how we could make it and keep it hanging in the cupboard. We discussed stem cells and their potential... then I said that actually we do have a perfect "spare body" in heaven. She looked at me seriously for a bit, and then said that anyway we could still design it and go into business together. Knowing that I would have to give up work (for a while at least) it was good to know I had a career option. "We'll call it "The Body" she said, as she left my cubicle.

Mr D arrived shortly after. Another change of plan. The tumour, against all odds, does not look like cancer to his expert eyes, so instead of brain surgery that minute, I would be admitted to C Neurological ward, and tomorrow morning have another, but full body, CT scan and an MRI of my brain. He would then see me in the afternoon, to tell me the treatment plan. He reached out and gently raised the edge of my soft cap. "Yes, my head's all ready for you" I said. With slightly twitching lips, he left.

Then I had another visitor. With my permission, Steph had called the pastoral care counsellor, and a lovely grandmotherly lady turned up and proceeded to comfort me. Although this is a Catholic hopsital (or perhaps because it is?) the PC service includes 'meditation and relaxation techniques' as well as prayer, so I thought it wise to ask a few pertinent questions. When two or more are gatherered in Jesus name for prayer, He is there. I wanted someone to pray with me, but only if they actually believe that Jesus is the son of God, and our saviour. Her eyes lit up at my question, and we had a lovely time of prayer and discussion. She fell in love with my description of my beautiful Boys and prayed for my worried and shocked eldest, and all my family.

As we spoke a different nurse came to wheel me up to the Neuro ward. The PC grandmother came with and held my hand the whole way even when she had to be squished in the narrow passages. I waved and blew a kiss of thanks to the kind nurse, and asked them to please thank Steph (who was busy with a new emergency) for me. Up in the ward I was given a lovely room right at the end of the corridor, and yet another kind nurse offered to make me REAL Hot milk Milo!. The PC stayed with me and we chatted more, about her family this time. Then she offered to read Psalm 23 to me, but from a pamphlet and not a Bible, so I asked to see it. It was a different version, and lacked oomph so I stirred up my memory cells and attempted to recite the beautiful KJV. Yea though I walk through the valley of death I will fear no evil. Thy rod and thy staff they comfort me... surely goodness and mercy shall follow me and I shall dwell in the house of the Lord for ever. With a promise to keep in touch and pray for me, that gift from God left for her home.

I was awake for the rest of the night, with hot flushes and pain continuous, but inspired by my recitation of Psalm 23, I began to practice singing it. Aha - see what I can do when I'm all by myself in the room at the end of the corridor! I segued into Christmas carols, old favourite hymns, lullabies I used to sing to my kids and a few favourite pop songs. My favourite Sara Groves was sung a few times, and The Lord and I had a great time together.

Sara wrote this about my life with Jesus:

I have been talking to you since I was a little girl

So many sweet memories of giving you my world

You are wonderful - a friend to the weary

You have been so faithful - your goodness follows me

You are beautiful your love is neverending

I was just wondering today how over all these years

You've carried so many cares

Calmed so many fears

You are wonderful - a friend to the weary

You have been so faithful - your goodness follows me

You are beautiful your love is neverending

The Year of Living Dangerously

Just when you breathed a sigh of relief that my last note was my last note...

I've had an interesting couple of weeks. I continued to experience lightheadedness and weakness, and over the weekend experienced a few near fainting spells and although I tried I was unable to manage even light housework. Each time the steroids gave me a boost for a day and then it was time for my chemo. This time, instead of getting stronger after the first few days after chemo, I got weaker and weaker, to the point where DH was carrying me to the bathroom. After a very bad Monday, we decided that a call to the Onco was needed.

From my sick bed, at 9 am I called, and spoke to the warm hearted receptionist who said she would get the onco to call back, but A&E was her advice. While we waited, our enthusiastic and friendly cleaner who had arrived earlier, chatted companiably with me and I had the courtesy to black out, briefly, while she was talking. She rushed off to call Dave who called the onco and asked how best to get me to hospital. The onco said definitely ambulance and about 15 minutes later, with the exciting whoop of a siren, the ambos arrived in my messy bedroom and me in my ugliest PJ's and not even bathed yet!

As my heart had been literally bouncing in my chest, they started sticking mirror tape wth press studs all over me, and plugged me into ribbons of wires and a big box. I was talking crazy, and very frightened. The huge male ambo called in the need to take me to hospital, and after some tests and obs, in short shift I was being wheeled out in a chair to the stretcher. As I was pushed into the kitchen my oldest PS arrived home from his early morning lecture at Uni." I'm alright, don't worry, just very weak" He just stood there in shock, while I was helped onto the stretcher and wheeled into the ambulance.

From then on everything was sort of upside down - the sensation you get when flat on a bed and everyone's above you. In the emergency room I was re-covered with press studs and hooked up to different wires, and I started beeping. My head was spinning and the now familiar tight band around my forehead was making me feel like the top of my head would lift off. I was in pain from my head to the tips of my toes, with the pain pushing through my bones. My muscles were burning, as if I'd run all the way to the hospital. Tsunami waves of hot flushes continued to wash through me. My distress was contrasted by my feeling of enormous relief when in walked Dr Alison ( the lady chemo doctor who was very gentle at inserting canula's), followed by my DH, who had arrived by car. They stood on either side of my cage bed and each held a hand. Dr Alison's calm manner settled both of us and we were able to tell her more sensibly what had happened. She asked questions and elicited detailed information all the while observing me closely. She got me to lift my arms, she tickled my aching feet, and asked me to push her. "I think it's just a reaction to the chemo, but I'm not happy with the dizzy spells, and headache, so just to be sure I'll order a brain scan. DH was hungry, and low blood sugar does not handle crises well in the long run, so I sent him off to get a meal (it was now after lunch). A canula was inserted, a drip of saline fluids put in and I was injected with an immunobooster.

DH returned, Dr Alison left to arrange the scan, and I dozed between hot flushes and waves of heel gripping, bone exploding, pain. A short while later, I was collected for the CT scan. That was over quite quickly and back in the emergency room booth, DH read National Geographic, and I dozed. After a while I said that" really, although much more extreme and longer lasting, this reaction of heart palpitations and fainting was very like my reactions in the past to codeine and voltaren". Dr Alison walked in, and I started to tell her, but she interrupted and said that she was very sorry, but the scan showed that there was a tumour in my brain. Wham! Big punch from left of field!. DH went very still and red. I said, " no, I was just thinking it was an allergic reaction". "No guys", firmly but kindly, and she held it up for us to see. After a minutes chat, she left to call the neurosurgeon and DH and I hugged and cried and then decided he should get home to the boys.

Achy, shaky, but not breaky, and holding onto serenity

What a wonderful thing a freestanding, stable toilet roll holder is! With it's help, I can haul my shaky, feeble body from the soothing, uplifting bubble bath, wrap myself in a towel, and rest my forehead on the soft pillow of the toilet paper. Thus positioned I gather strength for the next activites - dressing and cleaning my teeth . Then holding onto the walls, I'm supported back to bed, or recliner.

But CELEBRATIONS! the last chemotherapy threatment is done! I just have to dust off the expected next 3 or 4 weeks of side effects, then have a bone density test, and appropriate hormone treatment will begin, and continue for the next 5 years. My hair will start growing back in 6 to 8 weeks, but not before I shave off the last strands which have provided me with a fluffy halo above my smooth pale pink scalp. I want it all to grow back evenly.

This is not the first time (nor the last I expect!) I have been though a difficult time in my life, but once again God has shown me that I can do all things "through Him who strengthens me". He has strengthed me though all the prayers and comforting and encouraging words and help of family and friends. He has strengthened me to recognise that there is no weakness in resting when I need to, or asking for help and receiving it. I have put into practice Esther's (from the Bible) example of having regular perfumed baths and wearing your best clothes when faced with adversity: so on the days when bed or recliner are the only possible things I can cope with, I wear my prettiest pyjamas. I follow Ruth's example in sticking close to family - God's greatest provision - my DH and PS's - and I wear my sister's (W) gift of a bracelet that was sent to remind me of my bonds with my 2 sisters, and listen to my ipod from sister (S). Loving messages from my parents and other family, and gifts from them sustain me.

And it has been much needed - the 3rd chemo really knocked me around, and left me very feek and weeble. I have also had severe and scary breast pain: a mystery says the KD - all looks normal but back off to the TTR for yet another scan. Blessedly, no indication of cancer but, some new little cysts... next day off to the oncologist for his interpretation of all my pain and other side effects ( muscle burning, extreme fatigue, dizzy spells, hot flushes, pressure in my head etc etc) - "you're an enigma, a rare person, unique". Hey, maybe I could be a spy!

Being called names brings up my visit to the pharmacist to collect some vitamin B6 (it may help the breast pain if it is hormonally caused, said the onco). I am not happy with pharmacists in this country - they seem to think they can ask you any personal questions in "the interest of your health" as their right. After having to get some medication for an unmentionable side effect, I asked the KD "why can't they just ask politely if I need any information on the medication - why does it have to be (and loudly) "have you had this medication before?" KD replied blankly: "because they want to rule your life." I thought so.

Anyway, I decided my next visit would be to a different pharmacist, a bit closer to home, and where the friendly lady behind the counter is a nodding aquaintance as we say hello when we see each other walking the beach path. She greeted me with a smile and said "I love your hat and scarf! You look just like a Glamazon". I laughed as I thanked her and explained that according to the myth, amazons removed a breast to shoot their arrows better, so since my surgery, I am an Amazon, and it's nice to be considered a glamazon! During my explanation of the myth a man had come up to the counter, and joined in the merriment, but then he asked me sotto voce -" what's a glamazon?" "A glamourous Amazon!" As the penny dropped, he shrunk a bit - obviously hit by an arrow, poor man!

Now that I'm through (almost) the worst of this, what have I learned and gained? I've had a lot of laughs, and I've met some wonderful people. I hope that I have been and will continue to be, through my experience, a meaningful help and support to two clients diagnosed with cancer since my diagnosis. I hope that I can fully and deeply express my thanks and love to everyone who has supported me in this time - God Bless you all.

It has made me think more about the concept of the "bucket list". At first I thought what a fun idea, but I realise that the more you want to do, then get to do, there will always be one more thing. Praise God I have eternity. Any fun experience I get to do from now on is a gift of God (as it always has been) and I will thank anyone for sharing photos or stories of their fun stuff with me, to enjoy vicariously. For here and now what I really want to do is carry on loving God with all my heart, and my neighbour as myself. I want to continue to practice with my family showing more patience and love to each of them directly, and keep reaching, attaining and regaining serenity - the peace- that is God's gift to me, whose mind is stayed on Him.

May the Lord bless you all, and keep you, and cause His face to shine upon you, and bring you peace. Thank you for sharing this time with me. xxxx

Rocking and Rolling in the HoH

The appointment for my 3rd chemotherapy treatment was at 12.30pm, but no chairs were available until after 1.00pm. Once I was in a chair cricket Doctor took his time, so I was able to grab the remote for the chair before I was hooked up. Control at last! I found I could move the recliner back and the footrest up to where it suited me and keep the control nearby. Independence! I fiddled about while I waited and discovered the chair could also tilt from side to side! Vomit aid? Quick escape??

The veins on my wrist have decided "no more" so Dr cricket had to painfully pierce my inner elbow (next to the bruised vein from the vampire extraction the morning before) to insert the canula. Since I had had the allergic reaction last time, my Oncologist had prescribed pre-meds of Phenergan, and some stomach medication to prevent the burning sensation. The usual anti nausea med also went in, altogether with the saline fluid.

Comfortably wrapped in three warmed fleecy sheets, feet up and head back, I fiddled with my new iphone. After a few minutes everything started to blurr and swim in my vision, and I think my brain started leaking. I called for the nurse, and my voice came out as a long slow growl. In that state of course it was necessary to start a deep and meaningful conversation with her. I was like the monster in the HoH - and was so disconnected from my voice, and fascinated at the same time I had to keep talking! Nurse Allison kept saying it's just the Phenergan, probably hoping I would shut up. She was pleased I'm sure when suddenly I was speaking on the iphone to DH - apologising for my voice, but feeling the need to practise and try to get it right. Dh just chuckled a bit and got off the phone asap!

Then I started feeling really sleepy. Phenergan again, but the night before I had only remembered at about 1 .00am that I should have taken a sleeping tablet to counteract the cortisone tablets. As I was going to work in the morning, I did not want to be too drugged up, so I was already very tired. I was barely aware of the Taxotere going in after the fluids and premeds, and dozed snugly. A tremor wobbled in my cheeks, and woke me, then shot down to my legs which rocked and shook violently. I groaned loudly and gasped, coming awake to see Nurse Allison nodding at me - "it's the Phenergan, don't worry."

This happened every few minutes. I would fall asleep, only to be awoken by increasingly violent shakes and bounces. My legs had a life of their own, and atlhough I could feel the tremor building, I could not stop it - in fact I had to have it for relief. No need for the chair's controller to move me around! By the time the Cyclophosphomide was started, the tremors had become more widely spaced, but in my sleep I took to having vivid dreams. These mostly consisted of people asking me things, which I had to answer in my spooky voice. Talking woke me up, then I would have a tremor and then apologise, for talking. Fortunately no-one was listening, and only one other patient remained in the long room. I fell asleep again, this time awakening to DH coming to collect me. There was nearly an hour left of treatment, so he popped out again, and I went back to sleep, eventually the rocking and rolling and talking stopped.

Exhausted, I went home for a long sleep after dinner. I remember my youngest PS coming to hug me and say good night at some stage. I usually pray with him, but that time he whispered the prayer himself, and it was lovely to have a soft hug and hear a soft voice thanking God for our family and friends. Amen.

Add to the Beauty

Man, I looked beautiful today! I had on the most elegant hat - I would have been a standout guest at that pretty girl's wedding, and they would have compared ME to Grace Kelly.

I also looked like a call girl, a fluffy haired hippie and Austin Powers, baby!

I was attending the Look Good Feel Better workshop, where wonderfully kind, beauty trained ladies of advanced experience volunteer their time to help women undergoing chemotherapy gain control over their skin care, make up and head coverings.

A kind, well made up lady, who was actually there to support her mother took one look at me, who has no clue as to the difference between blusher and foundation, and decided I needed help. She abandoned her mother and took me over, ensuring I had the right colour foundation by raiding the spaces where ladies hadn't turned up. With the 3rd try I was amazed at the difference it makes to cover up that multitude of uneven, reddish patches and the little veins/capillaries that have blossomed on my nose and cheeks these last few years.

The lovely lady sitting next to me, whipped her pretty tea cosy off her head as soon as they told us to get stuck into the makeup, and soon one by one we all took off hats, scarves, wigs and teacosies to reveal our bald or balding heads. A few women who had only just started treatment were aghast momentarily, and naturally curious, but it must have been a bit of a shock for them to think, "that'll be me next week."

The make-up session was followed by a hats, coverings and wigs workshop. A hairdresser with a great sense of humour presented, and I got to be a model for the hats and wigs . I have a tiny petite head. I do not have "the big head". It is not a simple thing to fit a wig for a bald head - a lot of adjustments have to be made, including wearing padding under the wig and getting it cut to thin it out and make it more natural looking. After telling us that wigs are available in the Spare Parts department of the hospital - where we can also get other bits and bobs (pointing to her chest) - she told us the story of a nun who came to her salon to have her wig evened out. In chatting about hair loss, the nun alluded to hair loss in other parts of the body." Nobody told me, she complained, how COLD it would be!" Obviously, the wind was getting up her habit! " Never mind" said the hairdresser - at least you can tell all your Sisters what having a Brazilian feels like!"

All the wigs were huge on me, and covered half my face, but the dark auburn one which poufed above my forehead and curved onto my cheekbones was pure Austin Powers - amazing what a change colour and style and AMOUNT of hair can do to ones appearance! The long blonde wig proved that God got my colouring right when he gave me blonde hair, but the very long style, with big fringe, is also definitely not me!. The hairdresser advised against getting such a long haired wig in Tassie - apparently the synthetic long wigs swish prettily as we walk, but at the same time create friction against layers of clothing in the dry winter air. I imagined myself walking along tossing my head of long golden locks and giving little hops each time I shocked myself. I took the wig off - definitely a hat and scarf girl!

The group of women (about 25 of us) showed that cancer does not discriminate in age or culture. I met some beautiful ladies today, and a couple of supportive daughters. Looking across at other ladies with bald heads, I saw true beauty, with nothing hidden. A head is a beautiful body part - not one bald woman looked ugly. I saw strong cheekbones and determined chins, expressive and shining eyes, and tears, discomfort, and willingness to settle for less, to appear acceptable in society. I saw relief as the hairdresser made adjustments, gave advice and shared a headband which gave immediate comfort. Solutions to little difficulties that just added to the devastation, were simple and easily achieved once we were shown how. I saw bravery, and spoke to a woman who, after working through her first 2 treatments decided, enough! She will rest and give herself time to recover, and now she will put a headband under her wig and look good and feel a lot better.

A song by Sara Groves, has these words:

(I want to...) add to the beauty, to tell a better story. ... it comes in loving community... in helping a soul find it's worth. This is Grace: an invitation to be beautiful...and I want to add to the beauty..

The Grace of God is a gift freely given, and a beautiful glimpse of His grace was seen today in the graciousness of the women who helped us look good and feel better, and in the faces of the scared, tearful, smiling, stoic, openhearted women who are on the way to getting better, on the way to Best.

Makeover Me

I remember smiling at Trinny and Susannah making women over as I contentedly fed my youngest PS. ( My maternity leave involved a lot of TV watching!) Until the show got weird, (oh, Susannah was always a bit OTT about breasts, wasn't she?) it was fun to see ordinary daggy women like me have thousands of pounds spent on making them look good in well fitting underwear and clothes. That's what I got from those two women... size doesn't matter, but the fit must be good.

So, in the back of my mind I planned to one day be fitted properly for a bra, and to buy myself some really good quality attractive underwear. The daily grind, and greater needs overtook that little dream.... but now, thanks to B C and Medicare, I had my very own makeover (part one)! Reflected in my TV,(the venue was our lounge) I could see my personal fitter, a dark haired Trinny, expertly measuring me up and fitting me with a delightlful set of 4 bras and a camisole! Unlike Trinny and Susannah, she didn't tell me off, make judgements or personal comments, and she asked permission if she had to touch "breast tissue" to get the fitting done. This got me giggling as I remembered the first time a strange woman touched my "breast tissue" - my oldest PS was newborn and the two of us were not managing the breastfeeding task well enough for Nurse Phumi - "do it like this, Mommy!" coming over my right shoulder, and commandingly grabbing the PS's head with one hand and my breast with the other, she plugged the two of us together for the next 8 months.

The other exciting thing about my personal fitter's visit, is that it was "not just bras" but also the fitting for my new left breast! Yes ladies, this little baby looks like a breast, feels like a breast, (it warms to your body temperature) and comes with a money back guarantee, and the option to renew it every two years! What's more, you can keep it now, and Medicare will pay for it within 2 weeks. (Obviously, I'm back to watching too much TV in my time off).

It also comes with a special cleanser (only $9.50 extra, lasts for yonks) and it has it's own nightly resting place, a cradle. After cleansing at night (before you moisturise or you will get cream on the prosthesis and ruin it) pat it dry, and lay it to rest it this special box, with it's moulded cradle, next to your bed, ready for the next day. I'm glad there isn't a breast fairy.

Addendum to HoH part 2

Another Autumn day of sparkling beauty - and I could enjoy my breakfast on the porch looking out at the river, the warm sun on my (already rosy from steroids) face. The uplifting comments on my last note, which had me chuckling, made me think of the story of Gideon in the bible, who was reluctant to do the task God had set for him because his strength - force if you will - was weak. God told him - go with the strength (might) you have, and I (God ) will give the rest. Which He did in incredible ways, including not least of which a friend to support him!

It is wonderful to me to have the support and cheer of my friends and family: amusing comments, encouraging words, flowers, messages, hugs from the PS's and DH; friends who take the young PS out for a fun day.... As the side effects struck from late morning onwards my "force" diminshed but God supplied the rest, through His word and through my family and friends.

Judges 6:11 - 7