Monthly Archives: January 2015

My Mum


Friday 30th January

My mum lives close by to us, in her own house, by herself. She is eighty two years old, quite independent, and can still walk up and down the hills to go into town and meet with friends for lunch or coffee, and in the summer to go on the beach. She loves the sunshine!

Today however, her taxi driver sees her on the lounge floor, through the front window.

She had lain there all night and couldn’t get up.

Paramedics are called, all vital obs seem normal, just some lower back pain and general wobbliness.

I bath her and put her to bed, whilst my sister and my son tidy up the house.

Social Services are called and put an emergency care plan in place, arranging for someone to visit three times a day.

This works fine for Saturday, Sunday and Monday daytime, but her evening carer fails to turn up. Unbelievable.

Whilst I am attending a lymphoedema appointment my sister calls to say that she has again been found on the lounge floor.

The carer arriving at 11:00am found her, called an ambulance and my sister. The curtains were drawn, the gas fire on full blast, and the central heating up high.

My mum is confused and in a lot of pain. Social Services decide that she should be admitted to a care home for a two week observation period.

My sister drives her off to Lamorna, and I return home to my son and husband.


Day Case Chemo


Wednesday 28th January

Another day case infusion of chemotherapy for our son. The appointment is late afternoon, and it’s getting dark as we arrive in the cold and rain.

Bloods are checked first, and we wait forty minutes for the results ~ haemoglobin levels are low at 80, and there is talk of a blood transfusion as he is quite weak. Following a phone call to the consultant oncologist, it is decided to press ahead with the bleomycin infusion. This is followed by a saline flush and finishes with a dressing change. Our son hates the last part! The Hickman line that is in his chest has been there since the beginning of December, and does need cleaning and redressing every week, in case infection sets in. He is scared of the sticky dressing pulling his skin off when it is removed. But a very patient, young nurse persuades him to let her do this. No screams, no swearing. All is calm and pleasant! And a brand new, clean rectangular dressing is in place.

We go home tired, a little sick, but happy that the day is over.

My Month 12 Results


Tuesday 20th January

I receive a letter in the post today from my oncologist.

“I am pleased to inform you that the CT scan done on 15 December shows no evidence of new disease and no focal suspicious lesion in the bone. There are a few nodules which have been seen on previous scans, but they remain the same and have not grown or changed since.

I hope you find this reassuring.”

Oh yes! I can breathe easily for another three months. One less problem to worry about, a weight has been lifted from my shoulders. Sometimes I forget about ‘me’, and my issues; there are so many other things going on that I have to deal with, so reading this news is truly wonderful.

Son’s 30th Birthday


Sunday 18th January

Wow, who would have thought? Thirty years ago today our son was born into this world at the RD&E in Exeter. He was five weeks premature, had a cleft palate, under developed lower jaw, breathing problems, tongue tie, wouldn’t feed; resulting in four days in intensive care in an incubator. As I had had pre-eclampsia, I wasn’t allowed to see him straightaway, but the nurses did bring a photograph of him to me. Eventually I was taken in a wheelchair to see our son. I couldn’t touch or hold him as he was hooked up to tubes and monitors. We both stayed in the SCBU for almost a month, until he was strong enough to take home. A diagnosis of Pierre Robin Syndrome was given then, and a number of years later Asperger Syndrome, Dyspraxia and learning difficulties.

And here we are, thirty years later. On the chemotherapy ward.

We had always promised to take him for afternoon tea at the Ritz in London, to be “posh and sophisticated” as he put it, eating cucumber sandwiches and delicate little cakes. He had been looking forward to this for a long time. Alas it was not meant to be at this moment in time.

What we did have though, was all the family packed into his hospital room for a birthday party of sorts! Mum and dad, brother and girlfriend, auntie, uncle and cousin, and grandmother. Even a Skype call from uncle in Chicago. There were many cards, presents, and of course a big chocolate birthday cake, of which he managed a fairly generous slice! He even had a card and gifts from the nurses, cleaner and kitchen staff; a really lovely gesture.

By the end of the afternoon he was quite tired and weak. I think he had been thinking about this birthday for a long time, and the fact that he couldn’t celebrate it properly. He wanted it to be super special, a real landmark event. Thirty. Years. Old.

But we have promised that when all the treatment is over, we will have a thirtieth birthday party at the Ritz Hotel, and it will be every bit as special as he wants it to be.

Six Days of Chemo


Tuesday 13th January

Today our son begins a six day stint of chemotherapy. He and my husband leave the house at four in the afternoon to get settled in. It really is a gruelling regime. I am at work in the week, so will swap over the staying in hospital on Friday ~ we’ll do three days each, although I do drive after school to visit with them. It’s tiring for me, but I do want to see how they’re getting on each day.

The day before my son was due to return to the hospital, he became extremely anxious and stressful. This soon turned to anger and aggression, and he ended up hitting me and pulling my hair. He wouldn’t take his night time medication, and spat everything out. I know he doesn’t mean to hurt me, his head must be in turmoil, and it really isn’t his fault. It’s just his way of coping with everything that is going on with his life. He is so scared and frightened for the forthcoming hospital stay.

For my son, each day usually begins with two six hour bags of saline, followed by a specific tailored concoction of chemotherapy, steroids and anti sickness medication. It is no wonder he is completely wiped out, and spends much of the day in bed sleeping through all this.

A CT scan is ordered for Thursday, with an MRI fitted in, when there is a space in appointments. Do let’s hope that the chemotherapy is doing it’s job and shrinking the tumours.

Another Day Case Visit for Son


Wednesday 8th January

What a horrid experience for son’s day unit appointment this time round!

I was working, so husband and son got to the hospital at 9:30am, thinking it would be a couple of hours of chemotherapy.

But son had a temperature, high blood pressure, too high pulse, bloods were low, and he was extremely dehydrated. He needed loads of fluids before they gave him any chemotherapy: four hours of hydrating saline first. They eventually got home at 6:30pm after a long and tiresome day.

Son also has been prescribed sleeping pills to get him through the night; he has been quite tired and sicky over the last few days.

He really, really wants to eat, but then can’t as the taste or texture makes him retch. He is getting quite upset and scared.

Sometimes he gets cross, sometimes he just wants to hide away.

It’s dreadful to see him struggle.

New Year’s Day


Thursday 1st January 2015

Happy New Year to one and all.

We go back to the chemotherapy ward, but it’s only for my son to have a quick injection in his tummy to boost his immune system. It’s quick and painless for him, and soon we’re on our way home.

Let’s hope this year brings a turnaround to our fortunes as far as our health is concerned. I think both myself and my son have had quite enough, thank you!