I for Infusion Day

Half Yours won the Melbourne Cup ridden by female jockey Jamie Melham.

The day that stops a nation was memorable in other ways for me.  It was Infusion Day.

It began at 5 am, when I had blood pressure taken, shower at 6 am, breakfast at 8 am followed by the Registrar who came around and explained how the chemotherapy would be administered.

The nurse assigned to the task was carrying out this procedure for the very first time. As a result, she encountered some difficulty while attempting to insert a new cannula.

She tried about four spots and kept saying sorry.  The senior nurse came in eventually and put it in first attempt. It is still there in case I need any more drugs administered.

At 11.30 the Doxorubicin was first drug of my treatment. It stops cancer cell division and side effects include hair loss, nausea, fatigue and potential long-term heart damage. It glowed bright red and was administered slowly with a large syringe into the cannula by the junior nurse who was dressed from head to toe in plastic.  She was very nervous but was watched closely by her superior. It took about 15 minutes and we were all relieved when it was over. 

The next syringe held Vincristine which took about 10 minutes to infuse.  Apparently, this drug prevents cancer cells from forming new cells and triggers cell death. Side effects include Neuropathy in hands and feet, severe constipation, hair loss, fatigue, muscle weakness and low white blood cell count which increases risk of infection. Unaware of these dire side effects I was just happy that the young nurse was becoming more confident. 

Cyclophosphamide was next and this time I was hooked up to the machine for about an hour.  It works by damaging the DNA of cancer cells, preventing them from dividing and multiplying. Side effects include hair loss, nausea and reduced white blood cell counts. 

A saline drip was used between each application. The final infusion was to take four or five hours in case of an allergic reaction. Retuximab works by blocking the protein that causes cancer cells to grow and multiply.  Side effects can be fever, chills, rash and fatigue, even pneumonia! Every half hour a new bag was attached.   Some orderlies arrived to take me off for the breast biopsies but I was all tied up and couldn’t go.  My haematologist dismissed the biopsies and said they probably weren’t necessary as any anomalies in the breast could be put down to lymphoma.  I was in no position to argue. 

I’m home again.  Hard to believe but here I am.

This morning I thought I would be just resting but a nurse came in for three vials of blood before disappearing.  I had woken at 3.30 am and lay awake until 5 am when my blood pressure was taken. I must have dozed off until 7.30 am when the breakfast arrived.  Not sure when the vampire visit took place.

The haematologist came around and gave a prognosis.  75% to 80% chance of recovery after first six rounds of chemo.  If it failed I could do a second or a third round if necessary.  That seems a long way away and I’m surprisingly sanguine about the whole thing.

I was wheeled off for my MRI in my bed which felt very decadent.  My trolley pusher was a student at Wagga Uni doing early childhood education.  He was discussing it with another bed pusher. The MRI took about an hour and a half. I’m an old hand at these now.  I’m just glad I’m not paying for all these tests.

The Haematologist came back in.  He cancelled the heart fluid test as it was taking too long to organise.  He said if there was fluid around the heart it was because of the lymphoma and the treatment would sort it out.  I was happy to go home and called John.  We were not allowed to escape that easily as we had to wait for the Pharmacologist to explain all the medication and what it was for.  She drew up a chart which outlined what to take each day.  A nurse brought over some papers to sign and I was free.

Very happy to be home!

Maybe it was all a dream.  It didn’t happen and I will wake up in the morning as normal.  But no, there is a huge stack of tablets to take after breakfast.

G for Going to Hospital

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