Category Archives: Thoughts

The last week of term

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Wednesday 17th December

The final two days of term pass quickly. On Wednesday I drive to the hospital to visit with my son and husband, staying for a few hours, then back home to a dark house. Thursday we do a swap, I stay in the hospital whilst my husband comes home.

Friday morning sees us discharged early and we head for home. My son is so tired and spends the next three days in bed, eating very little and being sick. The chemotherapy seems to have hit him hard this time. He wants to eat, but can’t keep food down and says he has a metallic taste in his mouth.

By Monday he has perked up a little, and we actually manage some fresh air and a slow walk down to the town. This has done him good, and he finishes the day with some tomato soup.

Anger and aggression

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Thursday 11th December

I go to school all day, then travel to the hospital, arriving about 4:30pm. Son was really angry, aggressive, and swearing; he hit me, and told me to piss off.

“Can’t do this any more.”

“I want to die.”

“I won’t do it.”

I think he’s angry because of his situation.

He can’t move very far, is always plugged in, can’t have a bath, can’t sleep on his front, the chemotherapy makes him ill, and it’s plain boring just sitting all day.

He is angry, frustrated, cross, aggressive, full of pity, etc etc. He can’t see an end to all of this.

It took a while, but he eventually calmed down, and ate dinner.

After about an hour of “stuff” going in through his tubes, he wanted a wash down.

It’s tricky showering someone when you have to keep the water away from all the paraphernalia coming out of his chest. But we manage. Afterwards, however, the moist, hot air makes him sick, twice, unfortunately. But at least his hair is clean!

I leave my husband and son at 7:30pm and drive home. This is going to be a trying time for all of us. Patience, tolerance, support and understanding must  abound. We are strong; we will try our hardest to get through this; we will beat this; we will never give up.

Chemotherapy Week Two

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Wednesday 10th December

I drive to the hospital after school today to visit with my husband and son. Both are getting along incredibly well, strangely enough! Lots of patience and understanding is needed if you’re in one room with each other all day and all night long. Plus, whilst on the six hour bag of cisplatin, urine output must be measured and recorded. As my son can’t do this, it is left up to my husband or myself to take the ‘pee pot’ each time, pour it into the measuring jug and make a note of the volume! Such a delight!

I stay just over three hours, then drive back home and prepare for school tomorrow. A long day.

Back to the hospital

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Tuesday 9th December

Today I go back to school, having taken last week off. I find it difficult, trying to keep my emotions in check, and hoping to appear ‘normal’. I am stopped by two members of staff, who offer their support and good wishes. I almost crumble, but just manage to hold it together. Outwardly nothing seems to be amiss, but inside I am faltering, forever thinking of my son, soon to start his second round of chemotherapy.

The hospital ring in the afternoon letting us know they have a bed available tonight. So he and my husband will be going in between 7pm / 8pm. I really thought it wasn’t going to happen today!!! Son is ok about it. Well, happy-ish.

A quiet day

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Monday 8th December

Our first full day at home with our son since being released from the hospital yesterday, and he’s coping really well. We go out in the car for coffee with Nan and our younger son, who is on a mission to buy a Christmas tree and decorations.

Returning home, and it’s straight to bed to sleep for the rest of the day. The chemotherapy is taking its toll; but at least there is no sickness today.

A small amount of food is eaten, and then he goes back to bed. Sleeping through this seems to be the best thing to do.

We go home!

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Sunday 7th December

I went to work on Friday 28th November, came to the hospital that afternoon, and have been here ever since. But, today is the day we might actually be able to go home! Two nights in a hospital chair, and seven nights in a put-you-up bed is long enough, thank you very much!

At 3am this morning I was awoken with a tirade of shouting, lights on and door banging:

“I can’t sleep. I can’t sleep. You need to wake up. I can’t sleep. If I can’t sleep, neither will you.”

Oh lovely!!!!

I think he’s probably scared of leaving here, as he feels safe.

Having had breakfast, he orders lunch, and we wait to be discharged after that.

Collecting all the medication, instructions, telephone numbers, and treatment plan, we are then able to escape! After ten days we are ready to face the outside world.

What a life changing episode this has been; a real whirlwind of heartbreak.

Sleepy son

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Saturday 6th December

Well, yesterday was certainly a day I don’t wish to repeat. Our son has been sleeping peacefully for most of the night, and has not been sick since yesterday early evening. Thank goodness. Plus, he was able to keep the steroids down at 2am.

Not sure what will happen today.

Following two bites of toast and a cup of tea, the rest of the morning is spent sleeping.

By early afternoon he is much more perky, but wants to be quiet. He tells his brother:

“If you want to come over, just shut up and be quiet”

Ever the pleasant patient!!

We got him dressed about three o’clock and borrowed a wheelchair to take him to Costa and WH Smiths. He sat with his head on the table all the time, but at least he was able to escape from the ward for a little while. When we came back to his room, he was ready for another sleep.

At dinner time he wasn’t very hungry, but did try some soup and a roll.

We might try and leave tomorrow. We’ll see. But he keeps on saying, “No visitors, I want quiet and to sit in the dark!!!”

Hmmmm

Post Chemotherapy Sickness

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Friday 5th December

Breakfast is eaten heartily; porridge and a cup of tea, then it’s time to sleep. I think that is how my son will spend the rest of his day. He doesn’t like light, noise, talking or fuss.

There had been a suggestion that we could be going home today, but things changed so fast. Having woken up to go to the toilet, he suddenly became sick, and vomited on the floor, the sink, the bed, and himself.

The nurse came in to help clean up and change his bed. I took him in the shower room to wipe him down and wash his hands and feet.

As I was getting a towel, he slipped off the shower stool and fell on the floor. He lifted his head to look up at me, and then thumped back down again, scraping his nose. He wouldn’t get up for ages, and nurses and doctors came in to encourage him to move back to bed. He did eventually, and then fell into a deep, peaceful sleep.

He was then on hourly observations, and had a high dose of anti-sickness drugs. Apparently the sickness and grogginess and tiredness is normal. He will be feeling wretched. The chemotherapy is very toxic, but it has to be, to kill the tumours.

We won’t be home today, is the result of this morning’s setback. Which is a good thing really; at least he can be monitored properly here.

He was sick again in the afternoon, soon after he had his antibiotics. He did not eat lunch, just wanting to lie quietly in the dark.

It is just so horrible to see him like this.

Later on in the evening, he is sick again; all over his hair, his body, everywhere.

He is cleaned up by two lovely nurses, given a bed bath, with his hair washed as well. The bed is made yet again, and he is hooked up to more saline and some iv pain relief. At 2am he has his steroid tablets, and manages to keep those down, thank goodness. He sleeps peacefully for the rest of the night.

Chemo Day Two

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Thursday 4th December

All is going well for the second day of chemotherapy infusions. However, our son has decided that he doesn’t want any visitors today. He doesn’t really like the constant questioning about how he is, how he’s feeling. And I can understand that. Every four hours his blood pressure, temperature and pulse are checked. Doctors, nurses, cooks, cleaners, all come and go.

All he wants to do is sleep. And that is exactly how he spends the day. Curtains drawn, eye mask on, no television, just peace and quiet as the chemotherapy hopefully works its magic.

Chemotherapy begins

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Wednesday 3rd December

Having had two one-litre bags of saline to hydrate his body overnight, my son is now ready to begin his chemotherapy treatment plan.

It’s 11:40am, and he starts with ten minutes of Vincristine, followed by a hydrocortisone flush. Bleomycin for fifteen minutes, Mannatol for ten, finishing with six hours of Cisplatin.

He is so patient and accepting, he doesn’t moan as the clear fluids are introduced through the central line in his chest. He eats and drinks as normal.

We have two sets of visitors today: firstly his brother, girlfriend and schoolfriend. They stay for quite a while, chatting and keeping us company. Later on in the afternoon my mother and sister pop in for a couple of hours, bringing a massive basket of fruit and cards from well-wishers.

It is lovely to see everyone, but by the end of the day our son is beginning to feel extremely tired, and just wants to sleep.

Throughout the night saline is attached to the drip, ready for day two tomorrow.

It is scary to think of all the toxic fluid that is being introduced to his body, but if it means the tumours are zapped and killed off, then that is only a good thing, isn’t it?