Melody Berthoud
Posted by

Control

Melody Berthoud
Posted by
17 Nov 2017

When Andrew was diagnosed with Leukaemia we were put on a path we had to follow in order for him to survive. Joseph and I had little control over the schedule. Dates for procedures and chemotherapy were dependant on his blood counts rather than our busy lives. I threw the calendar away and started again.

Control.

When Andrew was diagnosed with Leukaemia we were put on a path we had to follow in order for him to survive. Joseph and I had little control over the schedule. Dates for procedures and chemotherapy were dependant on his blood counts rather than our busy lives. I threw the calendar away and started again.

We twice moved steroid week backwards or forwards because it clashed with the beginning of the school year, (no sense sending him in depressed and that setting the tone for the year), but otherwise we changed our working days to accommodate his appointments.

The hardest times were when Andrew sprung a temperature and we disappeared into hospital for at least the obligatory 48 hour stay. Birthday parties, cancer support group meet ups, weekends away or just being at home to get the washing done, all went out of the window. Of the 73 nights we spent inpatient a lot were over the weekend. He had a habit of spiking high temperatures at night and on a Friday or Saturday.

Joseph and I would work during the week, looking forward to catching up on life and the house only to find ourselves being solo parents and deciding who had the most important meeting on Monday morning.

At least we had some sense of control. For Andrew he had even less.

He HAD to take disgusting medicine, we smiled and played games to get the job done knowing full well he would die if we couldn't persuade him.

He HAD to be accessed so that his bloods could be checked.

He HAD to fast for hours before a general anaesthetic - 23 times.

He HAD to have painful injections in his legs.

No wonder he had almighty daily tantrums. They were exhausting for me, as a parent, but I understood they were Andrew’s way of coping with everything which was happening to him; he was trying to regain control.

One day about 10 weeks in he had an almighty tantrum. The new drugs were causing Andrew leg pain, tummy pain, sickness, nausea, grumpiness, and tiredness, loss of appetite and sore eyes. He didn’t know what he wanted that afternoon. He wanted a cuddle but it hurt, to be left alone but not, to lie down but it hurt, to sit but not; all his frustration came out through hitting me every time we had a cuddle and then massive tantrums when he was cross with himself for hitting me. I couldn’t get him in the pushchair to get Clara at 3:30pm so I ended up carrying him and hurt my back, he basically cried from 2pm until 6pm almost nonstop.

He would often tantrum from 8:45am until 9:15am on the way to taking Clara to school - probably because he didn't want her to leave.
On steroids Andrew once had a tantrum for twenty-five minutes because there were no courgettes in the lasagne I made for dinner.

Food was definitely something he could control. Eating or not eating. Demanding junk and refusing the healthy food. Refusing dinners I knew he loved and wanting alternatives. It only took one steroid month of debilitating constipation for him to know that eating his 5 a day was a good idea.

We created situations where he had a choice and a sense of control. We gave him options for breakfast, lunch and dinner.

Options for play days.

Options for routes to the hospital.

Options for supermarket shopping.

Anything to keep our 3, 4, 5 and then 6 year old happy and somehow in control of his life and by doing so gave us the control we craved and needed.

#CCAM #BCAM #Quest4acure #makebloodcancervisible