Settled In

On Tuesday afternoon Room 4 in the haematology unit became available and I had just enough time to set up my lovely space before I was allowed to go home for the night. It's a pleasant room and I'm lucky I don't have to share it. Surprisingly part of me would've liked to have stayed Tuesday as it looks so lovely! I spent Wednesday night in it but there is word that I may be moved into the Isolation Ward today.


Apparently, in the past, patients were based at home for the first week while taking the pre-conditioning medication, busulphan, but the dose and blood test times were so rigid that it was hard to enforce that discipline onto the patients (especially with the midnight and 6am dosage times) and now the hospital only lets patients out at very structured time slots. It reminds me of when I was at school and had to get the Matron to sign my absence slip. It's imperative that the blood tests are taken at the exact minute every half hour for three times, and then the blood is couriered to Christchurch to assess that the proper amount of medication is given, taking into account the height and weight of the patient. There are quite a cocktail of other drugs to be taken four hourly, six hourly, eight hourly and even some 24 hourly. The lovely nurses and their hyper-vigilance make me feel so well looked after.

I've had two wonderful surprises from overseas. My sister-in-law, Deidre (who lives in Sydney), sent in a parcel with six presents for me to open all at once or to savour over the whole time period while I'm in hospital. I felt completely spoilt with her thoughtfulness but have restrained myself with opening of just one present for now. I may open one a week! The photo above features Deidre and Grant's brother, Ross with Grant and I. It was taken quite a few years ago in our wild and free days before kids came on the scene.

The other surprise was from my stepson's, (Matt's) girlfriend's (Chrissi's) parents who were here from Germany touring NZ at Christmas time. They are following my blog and we are emailing photos back and forth. This is impressive considering we didn't actually get to meet them as we were away at xmas holidaying in different parts of the country. It is lovely to make that connection, fun to hear about the goings on in Germany, and also they seem really nice people. Chrissi is a gem so I'm not surprised to find her parents such caring people.

Grant has a heavy workload with me being away from home. He is the main parent, chief photographer, accountant, head chef, careful shopper and most prevalent wife visitor. Of course he is very busy but Subway has been doing a great trade with him recently. Neri is visiting often and together with Grant, they provide a ray of sunshine in my life. So far they have been able to work out schedules without too much bother.

My donor sister, Robyn (from Waihi), arrives soon to collect her growth-factor injections and start the three days of injecting herself twice daily in order to mobilise the stem cells from her bone marrow into the blood. She has had no experience around hospitals in the past but is stoic about her part in the process. I am eternally grateful to her for her pivotal role in my cure.

I've had the company and support of a nice round of visitors while I'm feeling well enough. Until now I've felt quite good, although sleep deprived. Just a slight feeling of nausea and not too much enthusiasm for hospital food. I'm getting my head around being in the ward and trusting to the process. On Friday the full on chemotherapy process starts which should be kicking in by Monday.

In Limbo

My twin sister, Karole, my guardian angel

Grant helped me lug in the suitcases and bags to the Isolation Unit whereupon we found hat these wasn't a room available for me. We were taken to the family room to wait. After having visualised setting up my own nurturing space, over the last two weeks, it was upsetting to find myself in limbo. I began hoping the whole thing would be delayed and started planning a trip overseas; after all, everything was packed. But no, it was decided that I would spend my time in the Procedure Room amongst shelves and boxes and various paraphernalia until a room became free.

It eventuated that two other patients have taken longer to become well enough to be discharged. And changing the date would interfere with the next lot of patients plans. I decided that having it been me, I would appreciate the same level of consideration if I was in their predicament.

Grant sat with me as I hunkered down and left everything in cases and bags longing for a more permanent solution.

My sister, Karole, arrived to hold my hand in the lead up to the central venous line insertion. Drowsy drugs were administered and after 45 minutes of tugging and pushing, with little discomfort thankfully, I now sport a 3 lumen line over my right breast. Any blood tests or drug infusion can be applied through these, which means no needle pricks until it is removed in the next four months or so.

At six o'clock the chemotherapy started. This consisted of an anti-nausea drug, first, and then swallowing 37 little white tablets. Apparently some people have real trouble with this, but for me (having become accustomed to taking many vitamins daily) it was a piece of cake. After that came the many blood pressure, temperature and pulse tests. These 37 pills will be administered every six hours over the first week.

In the afternoon Neri arrived with a lovely bunch of silk flowers and a wonderful collage poster she has been making over the last month, unbeknown to me. It transpires that the large book she has been carrying around on her social occasions transported the poster inside, in order to procure the get well messages from friends and family. I was overcome at the lengths she has gone to so that her mum feels supported and cared for.

A comfortable evening was spent in my first night of solitary confinement.

The Vision

On Thursday my very good friends from our Luscious Ladies Lunch Babes Club met and we lunched at one of their homes in Titirangi. Our group has been meeting and dining, monthly, for over five years. We believe the world's greatest treasure is the small pleasure of spending our time with good friends. We are there in love and support of each other amidst the laughter and the tears.

They spoilt me deliciously with a beautiful bunch of red roses, a lovely fragrant rose bush to plant in my garden, yummy chocolate cake and of course lunch. They also gave Neri a splendid climbing rose 'Iceberg' which absolutely delighted her, and she is planting it under her bedroom to climb up to her second storey window. I felt so supported and cared for; everyone needs to have a support group like this!

Neri and I planned a date for High Tea at the Langham Hotel. It was a real highlight as she had never been there before. From the impeccable waiters' service to the opulent dining room, it was a sensory delight. We gorged on cakes, scones and chocolate. I gave Neri a silver heart necklace and we shared some very tender moments together.

This is the last blog entry before admission date as I go in this Monday. Grant is helping me take in a truckload of my favourite things as I've been advised that studies show it's effective to stamp your personality on the room to create a more soothing, healing space. I'll be on-line and will keep you updated while in the Isolation Unit. I'd like to thank you all for your kind messages of support and care. I am truly lucky to have such wonderful friends.

I have a vision that I am the powerful Elven Queen (played by Cate Blanchett in the Lord of the Rings). I am dressed in white and glowing with ethereal light. There are vapours swirling around as I'm falling backwards into the outstretched waiting arms that are so ready to heal me.

Vulnerability is scary!

We took another trip away, this time to Wenderholm. The weather was iffy on the Saturday but the next day was brilliant! It's always a pleasure for Grant and I to meet up with old friends and chat the day away.

I've been feeling anxious. I've worked really hard in life at not leaving myself open to being vulnerable so this is scary for me. I met with a support worker who explained that the anxiety I'm experiencing is a "normal response to a horribly abnormal situation". I think that once I'm in hospital the angst will go and a peaceful resignation will set in as I put my trust, implicitly, in the staff knowing that they will do their utmost to get me through this. Well I'm really hoping I'll feel this way and soon, please soon.

Neri has been especially loving and keeps telling me how much she'll miss having me at home when I'm in hospital. She says she will long for the hugs and kisses, sitting on my lap and the extended chats about her life. On reading a blog written by a BMT survivor I found that the unit has an age 10 cut-off date for visiting children. I discussed with my specialist about being told that Neri, who is 10, will not be able to see me in the Isolation Unit. I assured him that she will follow all of the rules and be very well-behaved. He said that he has met her and that "she is, really, a young woman". He promised that she will be allowed to visit, but that there will be some days when I won't want her there. That sits better; knowing I have a choice.

Now that the busy work is done a sense of calm is coming over me. I'm including meditation in my day, twice daily, and it is keeping me grounded. It's slowing down my mind, giving me spaces to breathe fully and enjoy the wonders that the world has to offer.

Good Omen

My great friend and celebrant, Greer (pictured in the middle at the rear), visited to discuss final arrangements, should I be so unlucky. I know it seems morbid but, for me, planning of this nature takes the anxiety away. She made it a fun and lively experience; although we did shed a few tears. Greer and I have been friends for over 15 years and she officiated at our wedding 13 years ago. Grant popped home for coffee and found us in the midst of planning the scenario. He was bewildered and speechless as to how I could cope going through these matters. He said there was no way that he would be able to do it if the tables were turned. I felt strong and brave. Afterwards I put it all in a box, locked it away in the cupboard and buried the key, metaphorically.

Time magazine arrived in the post on Saturday and I couldn't help but notice the lead article featured on the front cover 'How Faith Can Heal'. Then I saw the date: February 23 2009, the very same day I am admitted to hospital. I take that as a good omen and take the recommendation to focus on my faith to help with the healing. Since our honeymoon, back in 1995, I have been a student at the School of Philosophy and along the way have learnt many tools that will assist with my recovery. I certainly will have lots of time to put them into practice.

Recently I discovered that not every patient, who doesn't go into remisson with leukemia, is offered the only cure for the disease: a bone marrow transplant. As part of the pre-treatment I underwent a number of blood, lung and heart tests to ascertain my suitability. I am thankful to have looked after my body well and that this is my only health condition.

Valentine's morning was especially sentimental at our house. I really wanted my loved ones to know the special places they hold in my heart. As anyone who has a serious health condition will attest, the personal anxiety makes for a stressful time on their close relationships. It was hearteneing to receive red roses and read Grant's card in which he assured me that he was there for me come what may.

And how is Grant feeling in the lead up to this? He knows that going for the BMT cure is the best thing to do. Rightfully, he is concerned for me facing this ordeal. He's not sure how he's going to cope without me, but he is thankful for my preparations with the 'Care For Neri' manual and the blog to keep everyone informed. During my convalescence, we plan to take more weekend trips away as it will be a while before I can mix with groups again.

Thanks to the many of you who have offered to help. I've taken a note of your details for Grant and Paul should they need them. It really is heartwarming to find that people pull together in tough times.

Hospital Directions

Go-Go dancer with Grant and Neri at Katy's Janis Joplin Tribute Concert.

I went into school to see Neri's teacher last week. It was excrutiating trying to hold myself together and put forward the information that she needed to know. Neri has become accustomed to my carrying on about my health condition, but there was still a poignancy in the air. The teacher assured me that she will be looking out for Neri and told me that the school had support people in place to assist children with significant circumstances like this.

For the past week Neri has been at camp at Hunua with her Year six schoolmates. Of course I've missed her buoyant energy and chatter around the house, but it's also freed me up to work at crossing many things off my list. The manic rushing phase has eased and I'm now feeling a lightness of spirit. I have to keep reminding myself that in a couple of weeks I won't be feeling so flash, and then I will need all of my resources to focus in on healing and keeping myself steady.

Neri returned home full of animation, enthused about her trip away. She and another friend had sung songs and joked over the microphone to about 100 children on the double-decker school bus all of the way back to school.

It's hard to know exactly how much the past two years of her mum's illness has affected her. Admittedly she has had to deal with the extra stress in the household, but is still able to express herself over the full range of emotions. I have noticed her nibbling on her nails more frequently and also needing her mum to help soothe her to sleep some nights. However she is talking through her fears and we're spending lots of time engaged in conversation and cuddles. It shows that some anxiety is there but she's planning on having her mum around for many years yet!

Today was a good day to revisit Ak Hospital and jot down directions for friends and family to find me in there. I was lucky that a good friend offered to come along with me as she had worked there several years ago and knew her way around. Ward 62 was not easy to find.

The specialist tells me that I will feel pretty good the first week, but the next two or so weeks will not be so good until the cells start to engraft. If you'd like to visit, the best thing is to text me on my mobile phone 0274722068 and check whether I'm able to receive visitors before departing. The phone will only be set to answer texts, and if I'm asleep, or not well, the phone may be switched off. Myself or my loved ones will reply when we are able.

So here it is: Auckland Hospital, Ward 62, 2 Park Road, Grafton, Auckland. Those of you who have pluck and fortitude can try and wing it without instructions, but it does require a steady resolve.

Drive to the main entrance on Park Road. Drive past the hospital entry and follow the signs to Carpark A which takes you behind the main buiding. Follow the car ramps, taking the parking ticket as you go, onto Level 4. This the best level, or if there are no carparks, drive up to Level 5. Then you will need to take the lift or the stairs back down to Level 4. You'll see the pedestrian exit at the side. Turn right and walk to the end of the walkway. Turn left onto the pedestrian crossing and walk into Entrance A. Follow the blue dotted lines to Adult Services and keep following these lines past the zany disc paintings right into the Ak City Hospital lifts. Take a ride to Level 6, turn right to find Ward 62.Turn left at reception. Go straight and walk to the end of the corridor and then turn left and go just past the sunflowers painting. Walk through the double doors on the right. Wash hands well at the sink. Walk through another set of double doors (this really is an isolation unit) and then on the left you'll see the reception desk. Staff should be there to assist and the five units are named individually.

On your exit check for the sign - lift to Carpark A. You'll need to pay for parking at the booth situated on Level 4 back at the carpark building. Follow the exit signs out. Turn right for motorway on-ramps and be careful to check signs for the correct motorway entry.

Sorry one more rule about the Isolation Ward: they're advising visitors not to bring any used magazines or books to leave with me as they can harbour bacteria.

Neri's trip away gave Grant and I a chance to have some quality time and we dined at an Indian restaurant. He has been busy with work commitments as he is now providing for the whole family. We will venture away overnight in our campervan this Saturday and we're looking forward to some great family time together, regardless of the weather.

I've been rushed off my feet lately and not able to see all of my friends, but I'll have plenty of time in that first week at hospital from Feb 24th for visitors, just txt first. The central line will be put into my chest on the day of admisson Feb 23rd. After that I'll have all the time in the world to wander down to the cafe and have coffee and a chat there.

Counting Down to Hospital Admission

It's amazing how busy life has been since I was given an admission date for hospital; especially as I am an over-preparer by nature! I have been feeling well and have vast amounts of energy possibly due to my, thankfully decreasing now, levels of anxiety.

I met with my specialist again, just to be sure we are doing the right thing by having this transplant, and he is certain that I do indeed need it. He said that any haematologist in the world would agree with him. He told me to get my affairs in order as there is no guarantee of survival and no way of knowing which patients will do well or not.

There have been so many tasks to complete. It's akin to preparing for an extended overseas trip, but without the excitement and anticipation. Still, if this is a cure, I definitely will be ecstatic and never take life for granted again!

Reflecting on the past year, I'm glad Grant and I treated ourselves to a fabulous 50th birthday party each. And last year I took Neri to the Police concert where, for her, Fergie was the main attraction. Also the trip Neri and I took to England in April to see friends, and look around London, was absolutely superlative. I just love seeing the look of awe and elation on Neri's face.

Every Saturday, of late, Grant, Neri and I have been taking off in our campervan overnight to enjoy the sites in the greater Auckland region. Piha was magical last weekend and it is still our favourite west coast beach. We stood in the surf and watched and waited for the sun to set. Magnificent! The weekend before, we took our camper on the ferry to Waiheke where we met up with good friends to see the Sculptures on the Gulf and to see our friend, Katy Soljak, take on the Janis Joplin role at her Tribute Concert. We dressed in sixties gear and flung ourselves around the dance floor.

This week I visited my sister Robyn, her fiance (Alan) and her daughter (Chloe) in Waihi to chat about our impending operation. She is being brave but understandably a little apprehensive about her role in the treatment. Now that the dates have been confirmed she is holding up well and is, above all, concerned for me. I told her that whatever happens, she can be very proud to have given me the potential of a longer life.

Thanks for all of the kind messages of support. So many people feel positive about my outcome. I truly am blessed to know so many people who care!