Thursday 26th February

This is our son’s last ever six night stay in hospital. We can finally see the light at the end of the tunnel. He is quite upbeat about going in. My husband stays with him on Thursday and Friday night, then I come in for Saturday and Sunday night, with my husband completing the final two.

On the Monday our son is seen by a physiotherapist as he seems to have trouble walking, and complains of pains in his legs. He tries out a Zimmer frame and crutches. The latter seem to give him a bit more stability. Peripheral neuropathy. Not what he needs right now.

Neither is another blood transfusion, but his levels are again low, so two bags are given to perk him up a bit. His appetite is almost non-existent, but he does manage a small amount of porridge, spending most of the day asleep.

On Tuesday our son doesn’t want to get out of bed and practice walking for the physiotherapist. He simply doesn’t have the energy.

It is during this time that our younger son flies off to Spain with his girlfriend for a much-needed holiday.

Friday 13th February

Here we are again. In the day case ward. But this time we seem to wait for ages. Bloods are taken to be checked, and eventually come back with haemoglobin levels of 124. Three hours to wait, just for fifteen minutes of bleomycin. Son is so incredibly patient. No moans or whines.

We end the evening with a meal in Brewer’s Fayre. Son’s choice, but it isn’t too bad, and he’s actually feeling quite chipper.

One week later, it’s deja vu: same place, same time, same chemo.

This time we have a meal on the way home at Pizza Hut. Son eats a fairly good portion, followed by ice-cream. The most I’ve seen him eat for ages.

Thursday 5th February

Son was timetabled to return to the hospital ward on Tuesday, had everything ready to go………no beds available! Wednesday, all packed and sorted…….no bed for him. Finally, he was able to go in on Thursday, to begin another six days of chemotherapy. He is now two thirds of the way through this 100 day cycle of CBOP-BEP.

Having had his blood checked prior to the treatment starting, his haemoglobin levels were too low (at 69), he was anaemic, a mouth full of ulcers, and feeling quite poorly indeed.

On Friday morning, prior to any chemotherapy starting, he is given a blood transfusion. Three bags. He’s not too sure about having someone else’s blood inside him, but he meekly accepts the procedure and drifts off to sleep.

Apparently it is quite normal, two thirds of the way into chemotherapy treatment, for your body to start feeling rubbish, to be short of breath, and for your antibodies to be low, finding it hard to fight infections.

I arrive in the afternoon, having finished school. He seems a bit better than he was this morning when we spoke.

My husband goes home, and I get comfy on the hospital’s guest bed for a three nights stay.

Come Monday afternoon, we do a swap, I go home and my husband takes over.

Finally on Wednesday, after all the chemotherapy, they leave the hospital. Son has had extra magnesium, and is feeling quite tired indeed.

He will be going back in on Friday for an afternoon infusion.

Then again a week Friday. After that, one more six day slog.

We have been told that there is a 70% probability that neurosurgery is next, to remove whatever is left of the tumour. This will be in Derriford, Plymouth.

Hmmmm. This is very scary for our son.

My mum seems ok. I go to see her Tuesday and on Wednesday. She had no meds, so I had to collect them from our local surgery and take them in to the care home.

She is complaining of back and neck pain, and not very talkative today. She looked a bit lonely and sad when I got there.

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.

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.

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.

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!