Tag: life

Z for Zooming through April

lindamaycurry10 Comments

I can’t say Zero, I can’t say Zen, because I’m still waiting. I’ve been chasing the haematologist all over town, leaving messages at his hospital rooms, his private practice and the haematology department at the hospital. Some people I spoke to on the phone said if the result is negative they often don’t contact the patient. I’ve waited until 5 o’clock Australian Eastern Standard Time so it’s time to put up the final post.

It has been a busy month with medical appointments sandwiched in between delightful trips to the country and city.

Let’s go back the day of the Laparoscopic Biopsy. I had been told to be at the hospital at 6.30am. I thought that was good news as the procedure would occur early and I might even be allowed to go home the same day.

I was awake when the alarm went off at 5.30 am.  By 6.30 I was sitting in the waiting room outside Day Surgery after John dropped me off.  A nurse came out calling my name so I went inside, stripped off, put on the split-back gown and an orange hat and lay and waited.

About eight o’clock I was wheeled in my bed to the room outside the operating theatre where I met the two anaesthetists.  The assistant anaesthetist was very funny, cracking jokes and taking my mind off what was ahead.  He said “I’m putting the funny stuff in you now”, as I was wheeled into the operating theatre.  As I looked around I began experiencing double vision and next thing I knew I was waking up in the recovery room. I think having an anaesthetic has improved a lot since my last one in 1993 when I had my wisdom teeth out. Then I had a mask on my face and had to count backwards from 10. 

Lunch arrived and I ate some of it with a cup of tea and a bit of carrot cake. I was soon up and walking and the nurse was able to tick key milestones off her list.

Then the good news arrived that I could go home.  I had ordered dinner and breakfast so I hoped someone got to eat it and it didn’t go to waste.

John had a lot of trouble finding me in Level 2, Block B West, but he got there in the end after a number of misdirections.  I had to call for the nurse when getting dressed as I didn’t realise it would hurt so much.  Also, I was still attached to leggings that pumped my legs, a very pleasant feeling, but not helpful when getting dressed.  I couldn’t even pick up my bag off the floor while in bed.  My jeans wouldn’t do up even though they were loose when I came in. I have just been pumped up with gas and obviously they didn’t pump it all out again!

After all the paper work to be discharged had been issued I threw up in the sink.  Didn’t tell anyone because they might have kept me in!

John suggested a wheelchair so while he went to get the car I was wheeled along many long corridors and into the lift. No wonder John got lost! He pulled up at the front door of the hospital and I was out of there.

I wondered when I would get the results. Would the doctor ring me or just make an appointment? I tried not to think about it too much.

A few days later:

I have now completed my NSW Fitness to Drive Medical Assessment which involved my GP checking my health record, discussing my current treatment and checking on my recent eye test. Easy peasy.

I also had my Health Assessment Check with the practice nurse. It covers medical history, blood pressure, continence, immunization, physical function (falls risk), cognitive function (memory/mood), and social support.

I knew I would have to memorise three objects so made sure I concentrated. Counting backwards by a large odd number was unexpected but I survived. I had to draw some geometric shapes and answer some pretty basic questions so I assume I passed with flying colours. The nurse gave me a brochure on assessment for Home Care. Apparently I should do this in case I need it sometime in the future or to be aware of what might be available to me now. .

The first few days after the laparoscopy were bearable in that each day saw an improvement in the ability to bend and twist without pain. The four small wounds were covered with waterproof steri strips so I could shower without worrying about infection.

It was the ANZAC long weekend. The weather was calm and glorious. The only blight on the horizon was waiting for those biopsy results. Each day seemed to drag as I wondered when I should call the haemotologist for results. I couldn’t do anything until Tuesday as Monday was a Public Holiday. I kept myself busy gardening, which consists of chopping back ivy and other assorted creeping plants which cover our high rock wall. We even hacked out two sandpaper figs which were establishing themselves in the rocks.

Part of the rock wall. Still a lot of work to do.

At 11 o’clock on Tuesday I rang the doctor’s office. Yes, the results had arrived. Yes they had been forwarded to the doctor. He was seeing patients today and would contact me today or tomorrow. At 10 o’clock on Wednesday I rang again. The doctor would contact me if there was a problem or he needed to schedule a new appointment. What did that mean?

And now it is Thursday and I have heard nothing. I’m starting to think that might be good news but my faith in the Public Health System is shaken as until now communication and treatment has been prompt and efficient.

Hopefully in Reflections I will be able to tell you of further developments.

Y for Yo Yo Life

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Life is a bit like a Yo Yo. The fact that the lymphoma has vanished is encouraging, although that is what I expected. It is the doubt cast over “possible malignant process in the mesentery” that causes concern.

The visit to the colorectal surgeon was an eye opener. Just as well I read the reviews about him online before attending the surgery. He didn’t have what one would call a bedside manner and mumbled as he talked so it was hard to understand everything he said but apparently he is very competent which is the most important thing.

He booked me into Wollongong Public Hospital for a laparoscopic biopsy of mesenteric lymph nodes in eleven days time. He couldn’t do it sooner and is going away in three week’s. He described the operation, especially the “exciting” bits where his face lit up with enthusiasm. Obviously he loves his job.

That means changing my medical appointment for my driver’s licence. In NSW, when you turn 75, you have to undergo a medical examination every year to prove you are still capable of being on the road. This time it will be accompanied by a Health and Welfare check which is funded by Medicare for the over 75s. That definitely does not apply to me, I keep thinking. I can’t be that old.

I have moved that appointment to thirteen days time so hope I’m up and about by then. As this is all happening in April, I hope to be able to inform you of the result of the biopsy by the time we get to Z.

I have to consider the next option if the biopsy shows signs of lymphoma. The haemotologist offhandedly said if lymphoma recurred I would go to Westmead Hospital for CAR T-Cell Therapy and then I would be cured. Such confidence!

I thought I had better prepare for the worst so did some digging. Westmead Hospital is a leading centre in Australia for CAR T-Cell therapy. The specialised immunotherapy offered involves reprogramming a patient’s own T-cells to attack cancer cells. It involves an initial hospital stay of 10 to 14 days. Following discharge the patient must stay within one hour of the hospital for at least 30 days for close monitoring of side effects like cytokine release syndrome. The hospital is 1 hour and 20 minutes by car from my home and 33 minutes from my daughter.

That looks like a lot of driving! Let’s hope it doesn’t come to that but one has to be prepared. I wasn’t concerned when I spoke to the haematologist but reading the reports from the CT scan and the PET scan are considerably more scary.

Let’s hope Z is for Zero signs of lymphoma, Zero further treatment, and Zero worries. Or it could be Zen, a state of calm, peace and acceptance of the present moment.

Q for Questions About the Future

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As Time Goes By

Sung by my favourite singer, Rudy Vallee 1931

You must remember this
A kiss is still a kiss
A sigh is just a sigh
The fundamental things apply
As time goes by

And when two lovers woo, they still say, “I love you”
On that you can rely
No matter what the future brings
As time goes by

It is the 25th August, 1933 and it is my 16th birthday.  My name is Elsa May Hall although my birth certificate says Elsie Mary Hall.  The woman who registered my name made a mistake with my middle name and I don’t like Elsie.  Elsa is much more grown up.

This is me when I was younger. I can’t find any recent photos.

My mother gave me a gold bracelet for my 16th birthday.  She wants to start a family tradition of passing it down to the firstborn girl in each generation of the family.  I wonder will I have a daughter to give it to?  I find it a bit unusual as it has her hair plaited inside it.  Apparently, some admirer of hers gave it to her but she didn’t marry him.  When she was 20 she ran away with a much older man (my father) and they were married in Melbourne. I was born in 1917 in a little railway cottage in Williamstown.  My mother was very sick afterwards and nearly died.  I started school in Williamstown when I was six so I was much older than the other children.  I was only at the school a short while when my mother said, “We are leaving on a train to go to Sydney today.” I didn’t ever see my father again.

Mother rented a house in Glebe and I started school at Forest Lodge.  I was happy there, as I made one very close friend called Ruth.  My favourite thing to do when I got home from school was to ride my scooter down the gently sloping path in Jubilee Park.  Ruth told me I was too old to ride a scooter but I loved the feeling of speed and the wind in my hair. I remember one day when I was in sixth class rushing in the front door, telling my mother excitedly about my promotion in the netball team.  She told me to sit down and listen.  She said that times were hard and dressmaking jobs were scarce so we were moving to Queensland.  She had a job at a cattle station as a housekeeper and cook so there would be food, accommodation and some money as well.  I didn’t realise that the cattle station was a long way from the nearest town of Charleville.  Nor did I realise the nearest high school was in Roma, hundreds of miles away.

It took several days to travel to Roma by train.  Instead of going to the cattle station, Mother took me to a hostel for students whose homes were a long way from the school.  I hated it.  I didn’t make friends and the food was awful.  I started school at Roma High School but was very unhappy.  In fact, I thought about running away but where would I go? I sent so many letters to Mother she must have realised that something needed to be done.  One weekend she arrived and took me to a house near the school.  The owner had a spare bedroom and said she would treat me like her own daughter.  At least now I had my own room but I didn’t like the woman at all.  She would make notes if I did anything to displease her and then she would send letters to my mother.  She also expected me to do housework the minute I got home from school and I didn’t think that was part of the agreement so we argued a lot.

It all came to an end when I made a friend.  Like me, he was an outsider.  His parents were Greek and ran the local fish and chip shop. We would walk home from school together and one day the snoopy landlady saw us.  Of course, she wrote to Mother straight away and said I was “boy mad”.  Mother arrived next weekend and decided that as I was almost 15, it was time to leave school and start dressmaking.

I thought I might be living with Mother at the station but a letter arrived to say my father had died and his sister (my aunt) was offering me accommodation while I did my training as a dressmaker.  Before I knew it, I was travelling by train to Williamstown, which I had left nearly ten years earlier.

I am now working at Lucy Secors.  It is a dressmaking firm which employs hundreds of girls, training them from the ground up.  I spend two or three months perfecting each part of a garment.  Starting with seams I progressed to collars and then to sleeves and buttonholes.  It is all very boring.  My aunt and uncle are quiet people, and my cousin is not at all exciting.  

1927 advertisement in “The Home” magazine for Lucy Secor from Circa Vintage Clothing Archive 4th June 2015

So here I am.  Everyone expects me to work my way up through the ranks at Lucy Secors until I become a manager or get married.  I have a good mind to pack it in at the end of the year and go back up to Queensland.  Maybe I can get a job dressmaking with what I have learnt. What does my future hold? I hope it’s a bit more exciting than my life has been so far.  Things have got to get better.

P for Plaiting a lock of my long fair hair

lindamaycurry16 Comments

When You Were  Sweet Sixteen

I love you as I never lov’d before,

Since first I met you on the village green

Come to me, or my dream of love is o’er.

I love you as I lov’d you

When you were sweet, when you were sweet sixteen.

Written by James Thornton 1896 

It is August the 8th, 1913 and I have just turned 16.  My name is Myrtle May Lock but everyone calls me Tillie because I hate my name.  I have a sister called Ruby (she hates her name too) who is 12, a brother called Charles (known as Charlie) aged 10 and a little brother called Claude, aged 7. Claude fell off the bed on his head when he was a baby and has never been quite right since.  He is always sick and misses so much school.  As a result, I missed a lot of school too, looking after him as Mother is often unwell.  I left as soon as I could at the age of 13 so did not ever go to high school.

Father said I had to have a trade as I should not have to depend on the family or a husband to provide for me.  I had the choice of dressmaking or millinery.  I decided that dresses were more important than hats and liked the idea of working with clean, soft material instead of my parent’s job running a smelly fish shop. At least Father now sells second hand goods and Mother can rest a bit more.

As the oldest in the family, I am always expected to do most of the work.   My sister Ruby avoids it when possible and is very demanding. When Father bought a cow everyone wanted to learn to milk it.  Everyone but me.  I knew that when the novelty wore off, I would be the one getting up early in the morning to milk the cow. I can’t avoid the weekly silver polishing, however.  Every Saturday morning, we four children must sit at the table and polish all the cutlery, the teapot, coffee pot, sugar bowl and milk jug.  When I have my own home, I’m not having anything made of silver.  Why make work for yourself?

As it is I work long hours five days a week at the dressmakers, measuring the ladies and drafting patterns for their gowns. I do most of the stitching by hand although we have a Singer treadle sewing machine for making linings in some of the dresses. We receive copies of the latest European fashions in magazines like “Gazette du Bon Ton” from France and “Harpers Monthly” from America.

That reminds me.  I was reading a magazine a few days ago and it went into great detail about the “unsinkable ship”, the Titanic, which hit an iceberg travelling from England to America. Over a thousand people drowned.  I have decided I am never going on a ship, ever.

Have you seen my birthday present?  Oh, I know I received the usual handkerchiefs, combs and linen for my glory box but wait until you see what else I have.  

I have an admirer!  He is much older than me and isn’t all that good looking, but he is very kind and has a lovely big house.  My father doesn’t approve of him so all I will say is that his initials are S.B. He asked for a lock of my hair!  In fact, he said, “Please may I have a lock from Miss Lock”.  I didn’t know what he was going to do with it but I snipped a long strand for him to take away with him.  Today he presented me with a blue velvet box.  I opened it carefully and inside was a gold bracelet!  It looked as though some plaited leather was threaded through the gold but it turns out, it was my hair.  On the inside is inscribed “From S.E.B. 9-8-13” and on the outside, in a gold shield, are my initials, MML. I shall wear it all the time.

I think my father thinks if I leave home and marry S.B there will be no one to help my mother but then it will be Ruby’s turn.  It’s time she did her share!

Father has stopped me from doing many exciting things.  Just recently a new photographic shop opened in the main street of Stawell.  I was looking at the pictures in the window when the owner came outside and asked if I would like to have my photograph taken.  He said he would put it in the front window to show people what he could do.  I had to wrap a sheet around my shoulders and let my hair down to my waist.  You should have heard the gossips when my photograph appeared in the window. The photographer told me a week or so later that a friend from Melbourne had seen the picture and thought I should try out to be a model for the big department store Myer. My father said no way would he let me go and model in Melbourne so I am doomed to spend my life in Stawell sewing dresses for wealthy ladies who seem to have a lot more fun than I do.

I wonder what the future holds?   Will I marry S.E.B.?  Will I leave Stawell and live somewhere more exciting, like Melbourne?  Will I have children and grandchildren? Will I be happy? Only time will tell.

O for Occupying Myself During Treatment

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The New Zealand actor, Sam Neill, wrote his memoir “Did I Ever Tell You This” while steroids kept him awake at night. He was diagnosed with angioimmunoblastic T-cell lymphoma, a rare, aggressive type of non-Hodgkin’s lymphoma. He is currently in remission but with infusions every two weeks to keep it at bay. His memoir is not about cancer as that is something he wants to put at the back of his mind. Such an inspiration and role model!

It would be good if I could say I learnt a new skill or wrote the great novel during my self-enforced hibernation.

The piano lay untouched when I could have been practising.  The Swedish Death Cleaning which I so enthusiastically started, lapsed into apathy. My days followed a regular rhythm of meal prep, cleaning up and washing and drying clothes.  The rest of the time was spent reading or listening to audio books.  I attempted to complete Sudokus, enjoyed Wordle and Quordle and Octordle. Pilfer had me playing against the computer and winning (on level 1). Watching TV took place mainly in the evenings and occasionally at lunchtime, when I enjoyed Escaping to the Country and drooling over beautiful houses.  The summer drifted by, largely spent indoors with the air conditioning on.

Writing my daily journal was a ritual before bed each night, listing my side effects and comparing them with the previous cycle. Not exactly a memoir!

There was something I needed to complete before March as my granddaughter’s 16th birthday was approaching.  It is a family tradition to pass on to the next generation a gold bracelet belonging to my grandmother.  She had been given the bracelet when she turned 16, in 1913.  She gave it to my mother when she turned 16.  In turn it was passed on to me at the same age.  When my daughter’s turn came she asked if I would look after it as she went travelling all over the world. It was still in my care as the time came again to pass it on to the next generation.

The owner of the bracelet, Myrtle May Lock

I came up with a plan to write a series of stories called “When I was 16”, showing how life has changed for teenagers over the past hundred years.  I was fortunate to have some lovely photographs of my grandmother around that age but only younger ones of my mother so that would have to do.  I looked back to my own life at 16 and asked my daughter to write about her life at that time as well.  There was such a contrast in the lives of the four women in the stories.  For my granddaughter the significance of the bracelet would be multiplied by the stories of its owners.

In the next post you will go back in time to 1913 and find out the origin of the gold bracelet.

L for Living Life Every Day

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 After a few cycles I almost knew what to expect on each and every day. Walking out of the Cancer Care Centre was the most wonderful feeling of freedom with a whole three weeks ahead before it started again.  This is what I wrote after the first visit to the Day Centre.

John dropped me off at the front.  I walked into the Cancer Care section and took the lift up to the 2nd floor.  Wrong.  Down to the first floor.

I had to wait in the waiting room for ten minutes.  Then I was introduced to my nurse Mia and shown to a reclining chair.

The order of chemo was changed from the one I had in hospital.  The Retuximab was infused first and took several hours. The other drugs all took less time and I was all finished in about five hours. My nurse was a senior nurse but she had just returned from maternity leave and said even in ten months things had changed a lot.  She was being reaccredited so had another nurse watching and discussing everything that took place.  All went well except it took two goes to get the cannula into a vein.

I came home with a bag of goodies, creams, mouthwash, lip balm.  Also chose two turbans made by local sewers for free. One I like because you can thread a scarf through it which gives it a bit more bulk.  I will try to buy some scarves in different colours for the other hats I have.

The time was filled with reading and listening to my audio books. Once a volunteer chaplain stopped by to talk. I told her I wasn’t religious but was happy to talk anyway. I had imagined that I might chat to the other people getting their infusions but they were too far away and every time I went there were different people in the chairs. The nurses were looking after several people at once so didn’t have much time to talk either. I did notice before Christmas that they wore colourful festive uniforms and asked if they were supplied. It seems they have to buy them but they can put them aside to use next year. They are a long way from the starched white dresses of the old days but far more practical and comfortable.

After each infusion, days 1 to 6 were not too unpleasant. Sometimes I had energy thanks to the steroids and was motivated to clean out cupboards and place unwanted goods on Marketplace. I might have a slight headache or feel a bit groggy but it was bearable.  The main problem was not being able to sleep at night so the doctor gave me a prescription for Temezapam which was to be used only when absolutely necessary.  I found I didn’t need it after the first few days. On the fourth day I would report to my Medical Centre for have an injection of Pelgraz, which stimulates the bone marrow to produce more white blood cells.  It was suggested I might like to do this injection in the stomach myself but I vehemently declined as I can’t even stand to look at needles.

The side effects of Pelgraz are bone pain but I found taking an anti-histamine and Panadol removed any unpleasant symptoms for a while at least.

Day 7 was usually a shock as each cycle I dared to hope that it would be different to last time.  It’s funny how memories fade and If I hadn’t written down how I felt it I would not believe it.  The effect of the steroids wore off and all of a sudden the whole body reacted to the drugs killing the cancer cells.  I think I was lucky because I have read of people who were much worse off than I was.

For about seven days it felt a bit like having the flu.  All my body ached, with swollen glands and blocked ears. My feet swelled up so that shoes no longer fitted, sore spots appeared in my mouth and throat to make eating and swallowing difficult, appetite disappeared and a mild feeling of nausea was ever present.  Tummy upsets were common and constipation became so serious I rang a lovely, kind cancer care nurse called Jewel who suggested I come in for an X-ray.  Much as I didn’t want to go back to the hospital I agreed and was cheered by the fact that there was nothing copious glasses of Movacol and Coloxyl wouldn’t fix.  I learnt to be better prepared in future.

I noticed numbness on my fingertips and in my toes.  This spread along the soles of my feet.  It wasn’t painful, just strange, like walking on soft straw.  The doctor said it was neuropathy and to prevent it getting worse he left Vincristine out of my sixth and last cycle. The strength in my legs reduced markedly.  Whereas before I could easily stand up out of a lounge chair while holding a tray I now had to place the tray on the floor and use the arm of the chair to help me stand.

As my hair began thinning John cut it short so the pillow was no longer covered in hair.  Eventually I asked him to give me a buzz cut which looked better than wispy bits of hair standing on end. My big toenails turned black and started lifting off, maybe from the pressure of my shoes so I invested in a pair of wide toed joggers and socks with individual toes.

Fortunately these symptoms didn’t all appear at the same time and there were medications for nausea, a mouthwash for the Mucositis (sore mouth and throat), Panadol for aches and pains and no need to do anything but try and get a meal on the table at night.  The frozen meals were a godsend.

Then around day 14 I would begin to feel normal.  After each cycle I noticed a few more symptoms lingering but on the whole I felt ready to face it all again by the time day 21 arrived.

What a relief each time I left the Cancer Car Centre, especially after infusion number 6.

K for Kindness

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When people hear that someone has cancer they are often unsure what to do and say.  I wasn’t expecting to hear from anyone except for my family but even in my short time in hospital I had an unexpected visit from a friend who brought some mandarins and lots of good cheer.

It wasn’t long before friends from the General Bewilderment Lane (that’s what we originally called our Aqua Fit group when we were Aqua Joggers) were calling to see when they could visit.  I was very aware of my low immunity so we agreed on no hugs and even masks on the first few occasions. A knock at my front door one day revealed flowers and soaps from the thoughtful Aqua Joggers.

They arrived in pairs with coffee from Mo at Praha, the coffee shop at the uni pool.  He had made it just how I like it. They helped us put the cover on the caravan and move it to its parking space in the back yard.  After all, it wasn’t going to be used for a while.

More Aqua Joggers arrived, armed with take away coffee and muffins, but when I worked out my good days I started making coffee for them with my new coffee machine.  It is a Breville Barista Pro, replacing my old one which was due for retirement. Another “Why Not?” purchase.

One couple brought us a chicken pie to save on cooking.  This was most welcome as my main motivation when cooking is hunger and my appetite had gone.

Out of the blue another group, my daughter’s Book Club, donated Dinner Ladies’ meals to save on cooking.  

My daughter had also arranged for John to order some Light and Easy meals.  My Hello Fresh subscription supplied three meals a week which still had to be prepared and cooked but required very little thinking. It looked like we weren’t going to starve and I found once the food was in front of me, I could eat it and maintain my weight.

One friend remained quiet for a few weeks. Then I received a message from her asking when we were going out for lunch.  It seems she deleted her emails and missed my message about my health crisis.  As soon as she found out I had cancer she came over to our house, laden with flowers and rich little cakes from Massimos. 

Emails, phonecalls and texts kept me in touch with the outside world.  One friend wanted to know all the details of my diagnosis and treatment which gave me free reign to vent.

When I finally returned to Aqua Fit four weeks after my final chemo it was wonderful to catch up with people who had been so kind during my self-imposed isolation. As John and I were having birthdays in April one lovely Aqua Jogger made us a cake which we shared over coffee.

Christmas occurred in the middle of my treatment.  My children and grandchildren arrived with promises that I was to sit and watch and do nothing.  It was the easiest Christmas I have ever had although I did manage to prepare a trifle in advance and a “do it yourself” prawn cocktail where everyone peeled their own prawns and added lettuce, avocado, mango and homemade sauce. Best of all, the cleaning up was not my responsibility.  Instead, I spent a blissful afternoon resting on my bed underneath the fan.

As someone who values independence above all things and is a bit of a loner, it was strange and touching to have so much attention from others. It shows the importance of belonging to groups and has motivated me to help others in a similar situation when and where I can.

J for Justifying a Cleaner

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 I used the word justify because it starts with J but I had decided almost as soon as I was diagnosed that I was done with cleaning bathroom tiles and kitchen cupboards.  I asked around but cleaners were hard to find.  They all seemed to have a full workload and were not taking on any new clients.

It was then I tried Hi Pages and received three responses from companies who employed cleaners. The one I chose replied immediately and agreed to come and meet with me.  Her name was Lyn* and she had recently been put in charge of all the personnel involved in house cleaning for their company.  Her sister had had cancer and she had shaved her head in solidarity. She would make sure that I had the same person each week and that precautions would be taken in consideration of my low immunity. My new cleaner, Carol*, was to start on Thursday.

That gave me a few days to tidy the house in readiness.  On Thursday morning 9 o’clock arrived but there was no Carol.  At 9.10 am I rang Lyn.  She had just heard from Carol, who was knocking on the door next to the garage but said there was no response.  I told her there was no door next to the garage but to walk up the steps on the left-hand side to a deck where she would find the front door and us waiting for her.

There is no door next to the garage! What was she thinking?

All went quiet.  Lyn had given me Carol’s number but there was no response.  As for Lyn she said couldn’t talk because she was in a meeting.

It was almost midday when my phone rang.  

“You were trying to call me?” a woman’s voice asked.

“I’ve been trying to call you all morning,” I said.  I’ve been waiting for you to clean my house in K…. “

“I’ve already cleaned a house in K…,” she said, and gave my address.

Then the penny dropped.  Some time ago a mischievous person had turned our street sign around so that it pointed in another direction.  As most people use satellite navigation it hadn’t occurred to me that Carol would be looking at street signs.  She told me that she pulled up at a house with the same number as ours and climbed the stairs to the right (not the left as instructed).  An old lady answered the door and seemed to be expecting her.

“I’m so glad you’ve come,” she said. “My name has been down for a cleaner for such a long time as I’m not very well.”

Carol cleaned her house and then moved on to another job.  After talking to me she realised she had just cleaned a house for free. The woman had probably signed up to a Home Care Package as part of Aged Care Assistance at Home. Sometimes it takes a long time for the system to process. Carol was not sorry for her good deed as she felt the woman really needed help. As for my cleaning job I would have to contact Lyn and arrange another day for Carol to come to my house.

Contacting Lyn proved to be a problem. It wasn’t until the next day that she replied to my phone calls. Her company had restructured its organisation and decided to remove house cleaning from its services. That’s what the meeting was about!  No wonder she wasn’t in a hurry to speak to me!

She did say that Carol might be available as a private cleaner so I followed that option and lined her up for the following Monday.  I also contacted the Council to report the matter of a faulty street sign, which, to their credit, they remedied within a few days.

*Not their real names

H for Hospital

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I made it through last night with minimal sleep. 

I had a blood pressure and temperature test at 2 am and another one at 6 am. I think I slept in between. 

Then came breakfast followed by the tablets.   Three white ones that are steroids called prednisolone, two yellow for gut protection and a pink one for kidney protection. 

John came in after breakfast and brought Saturday’s paper. I also had a Mercury (local newspaper) delivered because I am a private patient in a Public Hospital. 

John picked up his weekly pass for parking  (the other private patient benefit) and went shopping for more food. Lunch arrived, a large, rather unappetising bean salad of which I ate half. I will have to pick fibre rich meals as constipation and weight gain is a side effect of prednisolone. 

I was anxious to know if the grandchildren had made it to The Shiralee. Apparently, they had no trouble picking up the tickets and were happy with their front row seats because they could see the expression on everyone’s face. Cordelia especially was very taken with the performance as she had recently completed work experience with the Sydney Theatre Company. 

John and I sat in a recreation room with a view towards Mt Keira. It was a change from my four walls. I walked around the wards and sat up in a chair the rest of the time. After all I didn’t feel sick so lying in bed seemed a strange thing to do.

The third and final perk of being a private patient was free TV.  However, it was high on a wall and a nurse told me the sound wasn’t very good so I preferred to don my headphones and watch TV on my iPad. The monotony was alleviated by an injection in the stomach tonight with an anti-coagulant. 

The food is not shaping up to be gourmet. Dinner tonight was a boring Indian Butter Chicken with no flavour. As I was about to tackle dessert my grandson rang to tell me all about The Shiralee. The ice cream melted but it was lovely to hear from him.

Now for sleep.

Today was not so bad although I woke at 3.30 and didn’t go back to sleep.

The change of shift seemed to happen just outside my room with handovers taking place as tired medical staff left for home and sleep. Wandering down the long corridor to the bathroom I showered about 7am and felt much better.  Breakfast arrived and was surprisingly good although everything is in packets. The amount of plastic used in hospitals is mind boggling.

I was given my steroid tablets, had blood taken from my hand veins (much easier to get to) and a pin prick blood sugar test.  Blood pressure and temperature were taken and so far all is normal.

My daughter was back from her holiday in New Zealand and arrived with a big bunch of flowers but had to take them away again as they are not allowed in the wards. She and John brought me some lovely pyjamas from Peter Alexander which felt very decadent and drew appreciative comments from the nurses.

A good friend arrived at the same time so it was quite a gathering.  We tried to decamp to the recreation room but that was full of people so we grabbed some extra chairs and came back to my box room. 

My daughter and John went home to cook dinner and I read some of Mushroom Murders. My dinner arrived at 5 pm just as my son rang on his way back to Canberra from Mystery Bay where he had spent the weekend.  I was able to reassure him that everything was going well.

I watched two episodes of the second series of Professor T on my iPad. Now it’s 10.22 pm and time for bed.

Next day

This morning after breakfast I was wheeled to another level and the cannula in my arm was used  for the first time since Friday night.  I had a radioactive substance injected to indicate how well my heart was pumping.

Lunch was a boring tuna salad so I didn’t eat much.  The afternoon’s entertainment was a lumbar puncture.  I had to curl up sideways on the bed and have an epidural before a needle was stuck in my spine.  Some fluid was taken out and some chemo was put in – just a precaution apparently as there is no indication there is cancer in the spinal fluid.

I then had to lie on my back for four hours.  This is to help prevent a headache and so far, touch wood, I don’t have one.  John texted wanting to know if he should come up.  I said “yes” because I needed him to cut up my dinner as I wasn’t allowed to sit up.  I also needed more long pyjamas as I felt a bit silly walking around in shortie PJs.  

Tomorrow will be the first round of chemo. Didn’t I always say I liked to have new experiences!

G for Going to Hospital

lindamaycurry11 Comments

Every day is full of unknowns. It’s nearly midnight and I am in hospital!

This morning it was Sebastian’s turn to rehearse for School Spectacular at Homebush. After dropping Cordelia off at the railway station, the directions given by Maps took us through a different tunnel so that we came out near Roselands with 10 more kilometres to Olympic Park and about 50 traffic lights. Sebastian had to be there by 9 am (or else) and as the time of arrival approached we all grew increasingly anxious. We made it with 8 minutes to spare.

Sebastion rehearsing for School Spectacular NSW Department of Education

I settled back, preparing to enjoy the trip to Wollongong when my phone rang. It was the hospital asking that I come in for a biopsy of both breasts. Does that mean I could have breast cancer as well as lymphoma?  Anyway, I made an appointment for Tuesday afternoon and felt somewhat depressed as a result. 

The phone rang again. It was the Haemotology Registrar who asked if I would consider going into hospital tonight. He was worried the lesion on my back put me in imminent danger and I could become a paraplegic at any time. He wanted to start me on steroids which would reduce the inflammation on the spine. Then on Monday or Tuesday I’m to start chemotherapy. I was tempted to say, couldn’t hospital just wait until I take the children to The Shiralee, but it seems not.

I had left my bathroom bag in Sydney but managed to rake up some moisturiser, tablets, a toothbrush and toothpaste from our house in Wollongong. We made a mad dash around the shops for pyjamas and slippers.

I had to inform the other grandparents and ask if they would take over the teen sitting. Fortunately, they were on standby and even volunteered to take the grandchildren to the Opera House. 

The doctor thinks I have Non-Hodgkin Lymphoma (Diffuse Large B-cell Lymphoma). Chemo starts Tuesday. Chances of a complete cure are around 70 to 80% so that is comforting. I’m so relieved it’s not as bad as I first thought.

Diffuse Large B-Cell Lymphoma (DLBCL) is an aggressive, fast-growing type of non-Hodgkin Lymphoma (NHL) that affects B-lymphocytes, the immune cells that create anribodies. While aggressive it is often curable with modern chemotherapy regimens, even at advanced stages.

As there were no beds available at the hospital I was advised to go to Emergency and wait. We arrived at about 3 pm and waited and waited. I nearly discharged myself at one stage as I thought a bed would never become available.  After all, who would go home after 10 o’clock at night? I had a hydration drip from 4 o’clock onwards which started beeping every time I bent my arm.  It made a racket until a nurse came out to reset it.  She smilingly called me a troublemaker but the second time it happened she didn’t comment.  The third time another patient showed me how to reset it.  Press the bell button first and then the green start button.  Pity I wasn’t shown that earlier.

At 11 pm I received the good news that a bed was available.  Apparently an eight hour wait for a bed is considered quite reasonable.  I was wheeled to the Procedure Room which is used when no other beds are available.  It has no windows but right in the middle of the box like room is a bed which I longed to lie on.  It also has no ensuite. I had to walk miles down the corridor to the disabled bathroom but the shower felt so good I’m not complaining.   At least I’m in a room by myself.  Now I will try to get some sleep.

View from my bed