Tuesday 2nd December

Although we’re in a comfy new room, we did have a bit of a disturbed night. My son took ages to settle in a new bed, and a drip bag, saline, was attached about midnight, to the cannula in his arm.

Multiple times during the night he wakes up and shouts, “Toilet!” I have to unplug the drip stand to walk him to the loo with it. Every time we do this the alarm starts bleeeeeeeeping.

After breakfast he has the cannula taken out of his arm, and the second saline bag is attached at10am. Six hours worth. This goes in through the line in his chest. All is quiet and calm.

The chest line stays in for months, even when he comes home.

In the afternoon my other son comes to visit, and we all take a walk to the coffee shop, trundling the drip with us.

My younger son is so upset to see his brother in this way. He stresses the importance of healthy eating and not drinking fizzy drinks. When we get back to the room, there is almost a shouting match between the two of them. They are both crying their hearts out, clutching on to each other. Eventually they are hugging, sobbing and saying “I love you”.

I’ve never seen this level emotions and feelings between them. They usually have very little to say to each other; they do not have much in common at all.

Younger son leaves, and we are left to talk things through. Over and over again he wants to know that his brother has arrived home safely. I have to text him with older son’s questions:

“He keeps asking for you.”

“He is worried about you.”

“He is sorry that he shouted at you.”

“Is really looking forward to seeing you tomorrow.”

“Should listen to you more.”

“Sorry that he was in a really dark place today.”

“Sorry sorry sorry.”

These are all his words.

He is sitting quietly now, with only 35 minutes left of the saline, then apparently he has to sign a consent form for the chemotherapy.

He is so confused, and really doesn’t know what is going on. He tells people that he has a brain tumour, or that he has brain cancer. He told me earlier that deep down, he knew what it was. That he was resigned to it. He is a little fed up.

“It’s not fair. I want to go home. I don’t think I can do this.”

Is it best that he doesn’t know the severity of his condition? Is it best he is unaware of how poorly the chemotherapy might make him? Is it best he knows nothing of the side effects?

How can someone with complex learning disabilities cope with testicular cancer, a brain tumour and further tumours in his lungs?

Poor, poor chap. This is so desperately sad.

Monday 1st December

Well, that was such a better night’s sleep for both my son and I. It was considerably quieter, and darker.

We have to see so many nurses, doctors, and the consultant today. With bloods being taken, and obs every four hours

The consultant in charge of our son explained what is going to happen. He will be in and out of here, four or five days at a time for the next six weeks, with a couple of weeks recuperation in between. The treatment plan that has been put in place covers about sixteen weeks in total. Our son will feel very ill, sick and tired. And he will lose his hair. This did shock him a lot.

(Whilst talking with the oncologist, I was embarrassed to tell him that I believed I had developed cellulitis, as a result of wearing my shoes and stocking for too long ~ nearly three days! He very kindly wrote me a prescription for antibiotics, and told me I must look after myself as well. My leg is red, blotchy and swollen. Bugger.)

Late afternoon we are waiting to go down to theatre so that a central line (Hickman), can be inserted in his chest to administer the chemotherapy drugs. He will be sedated for this. He is ok, but becoming a little worried and anxious; really he is scared stiff.

The doctor with him seems great, and is very sympathetic to our son’s needs. The procedure should take about twenty minutes, followed by one hour of bed rest, then he can get up and walk around.

It’s all done! And we were told he was incredibly brave! The best patient they had had that day 😜

Soon after we return to the ward, we’re on the move to  a new room, with an ensuite bathroom, a large flat screen television and window to the outside world.  It’s almost ten o’clock by the time we’re settled; time to switch off the lights, and see what tomorrow brings.