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.