Walking Towards the Light

I finally moved into the BMT Isolation Unit on Friday afternoon. I have many lovely things on walls and shelves to distract me from the hospital look in the unit. They let me out (does this sound like boarding school?) for the last time yesterday and I was collected by a friend to have lunch in Newmarket. I will be in for the long haul for 3 - 5 weeks.

As I went about my day I had a sense of: last time I will collect my daughter from school for a while, last time I'll see my cat, Diaz, until later, last time I'll share time with Grant in the house for now etc etc.

This is a well-run ward hosted by a fantastically organised nurse who inspires great confidence. He told me to look at this time as just 3 months out of my life while working together for a cure. He said they like to work in the present with any side effects or reactions that occur as every patient responds differently. Also, I learnt that because I haven't had any previous chemotherapy treatments, and am relatively healthy, my immune system should bounce back quickly and I'll be out of here sooner. I'm especially impressed with him as he has found an extra table to enable me to use the computer with ease.

The last two days I've been experiencing some nausea but I've found that they've got really good drugs here to control it. It's hard to tick the boxes on the menu list when I really don't feel like eating anything. Today the nurse has hooked me up to an iv fluid and chemo drip which will be my constant companion for two days. Apparently I will be weeing frequently as a lot of fluid goes in to protect my bladder lining from the chemotherapy drug. I'm feeling cold and can't imagine wearing the summer clothes and nighties I brought with me without jackets and wraps.

My nurse has just kindly offered me an extra anti-nausea drug as it's lunchtime and I just can't face the thought of food right now. He put the drug directly into my line so that it would take effect fast.

The powers that be allowed me to bring in my lazyboy rocking chair! It's a perfect place to sit and watch the changing vista outside the window. The view is leafy and picturesque as I look out onto the main entrance to The Domain. I see many people on a mission to get some where - walking along the street, crossing the road and waiting at bus stops.

I am as the Elven Queen, Galadriel; powerful and knowing. I entrust these caring souls accompanying me on my journey as I walk towards the light...

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!

So how am I feeling at this point?

Photo of my life-saver sister, Robyn, and me

• Grateful that so many resources are being poured into my well-being
• Frightened about the side effects of the medications, dealing with pain and fatigue and feeling out of control
• Anxious as there's only two weeks to go until I am admitted to hospital
• Glad that I've spent a big part of the last ten weeks enjoying and looking around the great NZ outdoors
• Satisfied that my planning and organisational abilities mean that we now have a detailed 'Parenting Manual' and provisions put in place to help my husband and daughter deal with life's changed circumstances
• Sad that I may not see my 10 year old daughter, Neri, for a while
• Pleased that Grant's eldest son, Paul (23), is moving into our house on weekdays to help with Neri and to provide support for Grant.
• Thankful that it's only a year out of my life where I will need to make some changes but, after that, I have a good chance of being cured and able to live a normal life. again
• Special that I have so many friends and great sisters that willingly support and spend quality time with me.

The Diagnosis - CML

Grant, Neri and Sheryl Southam at Milford Sound, January 2008

It was nearly two years ago that I first noticed a lump under my left rib. At first I thought it was due to the extra effort I was putting in at the gym but, after checking the right side and not finding a match, a feeling of dread came over me. I'd felt less energetic and had been off my food and had also lost a few kilos, but I'd put it down to finally working out the "supreme healthy eating plan" to achieve my ideal weight!

At the doctor's surgery, my doctor predicted two scenarios; either a pancreatic tumour or an enlarged spleen due to a blood disorder. A blood test confirmed her second choice. The spleen had enlarged and was pressing against my stomach creating a feeling of fullness. She rang me right on dinner time and asked me to be sure I was sitting down while she gave me the diagnosis of chronic myeloid leukemia or CML.

Of course it was a big shock and totally unexpected. I was on an emotional roller coaster ride thinking about all of the ramifications for me and my family. It seemed rather unfair as I prided myself on the care I took with balance, food and exercise. The medical profession doesn't know what causes this chronic illness but it seems that exposure to environmental pollutants could be a risk factor. It made me wonder if all of those years spent in darkrooms processing black and white film and prints may have contributed to getting the disease, but I know a lot of photographers who have great health so maybe it was due to a genetic weakness.

CML is a type of bone marrow cancer, where chromosomes 9 and 22 switch places; it's called the exalted name of "The Philadelphia Chromosome". This switch creates a protein which sends a signal to the bone marrow to produce many more white cells than needed. The main problem with this disease is that, over time, the white cells become less and less effective and the body becomes more prone to infections. Also the disease inhibits DNA repair to the cells creating further abnormalities and so progresses to the accelerated phase within 3-4 years of first getting the disease. Then, after another 6 months or so, it enters the acute stage which is fatal. It was as confusing as learning a foreign language to me at the time, but the Internet is a marvellous tool for research and I've learnt a lot since.

The doctor told me to rush into Ward 62, Haematology at Auckland Hospital that night as the medical team needed to do urgent blood tests and hydrate me to lessen the potential of any liver or kidney damage from the body dealing with far too many white cells circulating. I was told that I would be in for 3-4 days. My stress levels went sky high as I wondered how my husband (Grant), and especially my eight year old daughter (Neri), would cope without me for that long.

The next day my specialist, Dr Richard Doocey, confirmed the diagnosis and told me that if I was to get any type of leukemia, that this was the one to get, as it was highly treatable with the latest wonder drugs. The staff at Ak Hospital were excellent with sharing their knowledge, warmth and caring. They gave me some booklets to read and I was sent home the next day to start the drug regime.

Impending Bone Marrow Transplant

To cut a long story short, after nearly two years of seeing my specialist and taking two series of drugs, with various side effects, I learnt that I was one of the unlucky few that the drugs did not put into remission. The drugs were keeping my blood results looking relatively normal but were not curing me on a chromosomal level. I was developing increasing chromosomal changes and the window of good health was closing. Dr Doocey predicted that I've had the disease for at least a year before diagnosis, which meant there was less time to find a drug that would work for me.

I met with Dr Doocey again, just after my 50th birthday party, on Dec 22 2008 and he told me that an allogeneic bone marrow transplant, or BMT, was now my best option. My siblings were tested to find the best tissue match. Only one in four siblings is a match so I was very glad to come from a family of six children. It turns out that my younger sister Robyn is a good match, and willing to go through the procedure, so I am truly lucky indeed. She will have injections to increase the mobilisation of her stem cells from the bone marrow to her blood, then they will collect these stem cells from her blood over four hours and give them to me through a blood transfusion.

A BMT has a good chance of curing the disease but comes with serious risks as well. It involves at least a 4-6 week stay in the Ward 62 Isolation Unit at Ak Hospital. First my own immunity is killed off with various chemotherapy drugs and then I will be given Robyn's donor stem cells. After 10 - 20 days the cells start to engraft and my immunity will start to rise slowly. The side effects of the chemotherapy drugs can be very unpleasant and can leave the patient with dealing with damage to the mucous membranes and very low energy. When the immunity is sufficiently stable, and providing other serious complications don't arise, I will be sent home to continue the recovery.

Then I will have at least a month or two visiting Ak Hospital Day Stay to be under close observation and to clear up any problems. Graft versus host disease (GVHD) is one of the biggest problems and this is when the donor's immune cells attack the recipient's leftover immune cells but taking steroids usually clears up this setback. After six months I should be able to join the outside community again, although I will be able to have visitors at home in the meantime.

Amazingly Ak Hospital are able to admit me very soon; I've been given a date to start the BMT: February 23rd. I will go into the Isolation Unit in Ward 62 at Ak Hospital and that is called Day -08 (minus 8). On day 0 (zero) I am given the stem cells. The numbers then work forward from there, with the specialist watching out for engraftment of the donor cells by day +10 - +20.

Of course my priorities have changed since I last saw the specialist and I've decided to leave the photography business to Grant and focus on wellness. However it is strange to be feeling in such good health (able to go to the gym and have plenty of energy for my family, friends and hobbies) and yet I require the major medical procedure of a BMT. But as I mentioned, the window of opportunity for remission has closed, and without medical intervention my health will decline rapidly.

I have a good shot at being cured and I'm choosing to focus positively on that. I feel well-supported by my family, sisters and friends. I'm considering this time to be one of 'renewal'. After all, I will be left with my sister's immunity (and curiously her blood type) and she reckons that she's really healthy and strong!

Policy on Visitors

I have set up this blog to keep family and friends informed with my progress. Also I hope it will help other BMT recipients get another insight into the whole experience. My unit has a telephone for outward going calls and I plan to keep in touch using email and txts too.

Visitors are welcome, but with these restrictions:

1. Adults need to arrive in clean clothing, remove jackets and wash hands upon entering the BMTU. This will be a relief for those who expected to wear masks and aprons!

2. One or two visitors are allowed at a time. A txt first would be appreciated, just to make sure I'm feeling well enough.

3. No fresh or dried flowers, pot plants or fresh fruit are allowed, but cards would be appreciated.

4. People with known infections such as colds, coughs, diarrhoea, vomiting or any other infection must not visit; not just for my sake, but for the other four patients as well.

5. Those who have been in contact with illnesses such as chickenpox, measles and mumps must not visit.

6. No children are allowed to visit as their immune systems are not as well developed.

Hey but don't let this put you off calling in on me. If I'm feeling up to it visitors will provide a much needed support and distraction.