What a Joy to be Home!

Neri and I outside the Eutopia Cafe, Kaiwaka

What a joy it is to be home!

After six weeks in the BMT Unit I was hankering to get back to normal family life and to see my house and cat. The staff were great and the care was excellent but there's nowhere quite like home. It's Day 100 today, that's 100 days since the bone marrow transplant. I am finally feeling a bit more like myself at last. All of the blood counts are in the normal range and the liver and kidneys have coped well. Nobody said it would be easy, but my specialist did say that nothing can prepare you for the experience of undergoing a BMT.

I spent the first month at home sleeping on a single bed in the lounge so I wouldn't need to navigate the stairs. However the bath was beckoning so I did make it up and down the stairs a few times, with a lot of help, in that first week. Eating was problematic and we hired a carer who cooked and shopped for me for two weeks. She was a great help but, reluctantly, I had to let her go due to the burgeoning household expenses. Then it was up to Grant to provide the cooking, shopping and childcare services. Neri was a great help in those first few weeks with requests for hugs, cups of tea and fetching things.

It was all go for Grant as he also needed to run his busy photography business. Of course he did not take kindly to requests for food and then my reluctance to eat it. It was a burden that proved a little too heavy at times and spurred him into a middle-age crisis at the age of 50. As I starting feeling better he responded better and happily all is well now, the upshot being that he is planning the Southam Cycling South epic journey from Cape Reinga to Bluff on his bicycle this summer. In the process he hopes to raise money for Mobility Dogs as well as increase his fitness and lose a few kilos; not to mention the fantastic experiences he will have along the way.

Although I lost six kilos through the hospital episode, I now need to rebuild my fitness back to my previous level. This proves difficult with the cool winter air hampering my urges for walks and aqua-aerobics classes don't appeal at the moment either. However excursions to the shopping mall, movies and cafes with friends are keeping me on the go. We've been able to get away for overnighters in the campervan every second weekend or so and I've had the bike out a couple of times.

All of this has not stopped me from socialising with friends. They are my sanity-saver and thanks to all you great people out there for your company. I resumed household chores and cooking quite quickly and now I'm able to recommence business administration duties.

I see my specialist next week and he will look at reducing the cyclosporin tablets (immuno-supressant) and hopefully get me back to a pill-free existence.

Cleared to go home

Over the past week I have been going home on day trips from the hospital to transition into going home. Everything is still a big effort but am getting a little stronger everyday.

The specialist cleared me today to leave the hospital. The grafts are good, platelettes are rising, liver and kidney functions are fine and there are no signs of Graft Versus Host Disease.

The mucositis has improved and I've been able to swallow better. The naso gastric tube has been removed at last now that I'm able to swallow the pills and eating small amounts of food and drinking juice and smoothies.

The energy levels are low and the specialist says it will take 6 months or more to get back to my usual level.

I have had some nice highlights with family and friends. My father and his wife Cindy came to see me from Wanganui. My brother David, his wife Judy and daughter Samantha and Karole collected me from the ward and took me on a beautiful day on a jaunt to the Domain. It was wonderful to get outdoors and feel the sun on my body and breathe fresh air again. We came across a band playing there at the rotunda. Grant and Neri met us there to enjoy the jazz music and there was a great feeling at the concert with many people up dancing. That sure did lift the spirits. Friends and family have been collecting me and taking me home for visits.

Big set-back with 5 days in Intensive Care Unit

I was progressing along according to plan when frighteningly on Sunday 22nd March I lose two days in an induced coma and wake to find myself in the Intensive Care Unit.

It seems that with the severe mucositis, and the drugs prescribed to deal with that in order to swallow large pills over a very sore throat, caused a knock-on effect of my body not coughing enough to clear a chest infection. The nurse found me when she came to check on meds. I don't remember a thing but was apparently found collapsed back across the bed struggling to breathe and trying to cough. The day before I had developed a 38.2 temperature. There was a mucous plug in my chest. The team took 2 hours to stabilise me, clearing and oxygenating airways before taking me to ICU and placed many tubes in my body.

When I wake up I find I have a ghastly breathing tube and naso-gastric tube in place and can't speak. The next day they finally took out the breathing tube, replaced it with a hefty breathing mask, then another breathing mask, then oxygen to the nostrils then to breathing normally. The three days I was conscious there were very anxiety-producing for me.

Grant and Karole were phoned and brought Neri to see me while in the coma. I am told that Karole sat and held my hand and Grant looked sad and frightened while trying to make it all seem kind of normal for Neri's sake. It is scary for me to think that I came so close to the end.

They're all saying here what a fighting spirit I have and how brave I am etc etc as not many have the inner strength to make it through this. As I say, I don't remember any of it.

Since then it has taken quite a while to rebuild strength to do any but the most necessary of tasks. Still coughing lots and have a sore throat and the staff are wary of giving me anything to help with pain except panadol. Now I feel like a metamorphosised butterfly trying to inflate its wings in order to move onto the next step. They say home in about a week, but that depends on when this chest infection clears and blood counts results etc.

Burning hot to Cold and shivery

My main nurse is a welcome distraction as I delight in his picturesque phrases..." The BMT transplant is a magic bullet! To put out a Victorian fire you need more than a bucket of water. We give you enough chemo to kill a baby elephant." He loves working here as he knows the patients have looked after themselves or they wouldn't have been eligible to have these treatments. To him it's a reminder every day not to take life for granted and challenges his friends with minor complaints to come visit ward 62 and see what illness really is!

On Monday I began the full on chemotherapy with cyclophosphamide infused over two days. I felt absolutely zonked and nauseous- not a pretty look! I felt like I had just completed a climb on Mt Everest without the oxygen, guide ropes or steps! Then mesna (for protecting the lining of my bladder) was infused at the same time initially creating the worst problems. I had a fairly rare and extreme reaction to it...my face flushed as red as a beetroot and my nervous system ranked up to high alert. Frantically I tried to cool down with wet cloths and a fan while Grant massaged any achy muscles as needed. In the meantime the central venous line in my chest had become infected (called cellulitis) which gave me a high temperature and left me feeling cold and shivery. Can you imagine the paradox of sitting there with a cold shivery body covered in woollen blankies and ice-cube cold towels on your beetroot-red face?

They removed that infected line Tuesday morning and have delayed Robyn's stem cell infusion until Tuesday afternoon in order to give the antibiotics time to clear the infection. Then they will insert another line on Thursday which is a good thing because the medication infusions now go through a vein in my hand which stings. Ouch!

Today the anti-rejection drug cyclosporin was infused into my bloodstream at the start of its 30 day cycle. The only side effect, as yet, is an over-heated body and, yet again, a flushed face. Fortunately my room is the coldest in the unit and is also equipped with a heater, so I am able to adjust the temperature as needed.

I am very grateful to have my family present supporting me through these tough and trying times. I don't need to care what I look like, what I say or what I don't say.

My sister Karole brought Robyn to see me fresh from the blood centre. Amazingly Robyn only needed to give blood for three hours as her stem cell count was so high. They needed to collect an astounding three million cells per kg of my body weight to make 210 million of the minuscule things and succeeded in a shorter time frame than expected. It seems that the injections have done their trick and ramped up Robyn's stem cell supply to the blood. The conclusion is that she is as healthy as an ox! This is truly fantastic as they had warned her that they might need her back the next day for a second round. She has had to deal with aching bones in her lower back, hips and sternum which luckily paracetamol had taken the edge off. Her overall report was that it was not as bad as she had expected and she was glad to have done it for me.

I am glad I asked friends to meet with me in the first week at hospital as in the past few days I've felt so totally zonked that I was definitely not in the mood for chatty company. Mostly I am lying flat on my back and can barely open an eye.

My mind has taken to conjuring up music video like images to make up for the lack of stimulation; unless this is purely a psychedelic side effect of the cocktail of anti-emetic drugs. They change and morph into different and compelling shapes. I have an image of Pegasus rearing up on his hind legs in silver on a black background in bas relief form. The clouds are all etched into diamond shapes that recede into the background. It makes me wonder if some of the far-out artists have tried these drugs! I'd love to capture these images on video and hold an exhibition. Warning: Adults only. Don't bring your children!

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.