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.