Category Archives: Musings

Month Twelve of my Clinical Trial

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Monday 15th December

Two days of tests for Month Twelve.

So this is it, the end of the ‘Drugs’ part of the clinical drugs trial, for the adjuvant treatment of stage three malignant melanoma.

For twelve months I’ve been taking pills in the morning and again at night. I do so hope they haven’t been a placebo, but the real thing, as supplied by GlaxoSmithKline for the Combi-Ad trial.

We arrive in Exeter mid-morning on the Monday, do a little shopping, then I begin the tests. A CT scan, followed by a cervical smear, finishing with an Echocardiogram.

All is completed by 5pm, whereupon I go to find my husband and son who should be waiting in the cafeteria. But no sign of them there. I phone my husband who tells me that my son has had a ‘funny turn’, and has fainted. They had been making their way down to the car to get some fresh air when my son collapsed. I caught up with them in the corridor: doctors, nurses, upset husband and a frightened son.

My son is sitting in a wheelchair, answering all sorts of questions. My husband is visibly shaken too. We are told we must go to A and E for my son to be checked out. (He is on day fourteen of his chemotherapy, and is attached to a small pump delivering bleomycin through a line in his chest. Testicular cancer with progression of tumours in his brain and lungs).

We sit and wait, with my son lying on a bed, for just over three hours. We think the collapse was due to tiredness and dehydration. Since starting chemo, my son has not enjoyed drinking his usual fruit juice or cold drinks, complaining of a nasty metallic taste in his mouth. All he can manage are infrequent cups of tea and a little water every now and again. It was rather scary for him, and for us.

After observations and an ECG are done, we are allowed to go. Arriving at the hotel just before nine at night, we make our way to the restaurant across the car park. Just before we reach the entrance, son is very sick, so we about turn, return to the hotel, order a delivered takeaway, and finally eat dinner just before 10pm. Truly a long and difficult day.

Tuesday morning, and I’m back at the hospital seeing the dermatologist first. A full body skin check and a feel of lymph nodes. All seems normal, no problems, see you in three months.

We then drive to the main hospital to meet with my trials nurse. Mini meltdown follows when she asks about my son. She has met him on a number of occasions, and has got to know him quite well. Cuddles and kind words of comfort are followed by bloods, temperature, weight and blood pressure checks.

I then move on to a different department for an ECG, somewhere else for an eye exam, finally to the oncologist for a chat and the dreaded rectal exam.

And there we have it, twelve lots of four weekly visits, numerous scans, examinations, pokes, prods, and pill pots has come to an end. What follows now are three monthly checks for the next two years. I know the intense monitoring has been worthwhile. It may have been intrusive, but at least I feel I have been proactive in trying to do something to look after my body.

We drive home from one hospital to yet another, dropping my son off in Truro for his next round of chemotherapy. We stay a while to have him settle in, then my husband drives me home only to turn around and return to the hospital to be with our son.

A very long and draining couple of days. My drugs trial is over, but my son’s chemotherapy journey has just begun.

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

The news you never want to hear

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Friday 14th November

Since the operation to take a biopsy of a lump in my son’s testicle, he has continued to be sick. Vomiting almost daily. It is maybe just the medication and anaesthetic working through. It was only three days ago. I do hope so. He is left feeling tired and wretched.

The urologist from Torbay phoned my husband this morning. There are small amounts of cancerous cells in the biopsy that was removed. So, our son needs more surgery. Quite soon, before everything has healed, hopefully next week. The testicle will be removed and a prosthetic inserted.

This is crap, as our son now knows how painful the recovery is. And he will get anxious in the lead up to it.

We haven’t said anything to him.

We will wait until the consultant phones.

Perhaps get the Macmillan nurse to talk with him.

Not fair, prickly pear.

Back to school

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Tuesday 8th September

I haven’t taught since May 2013; fifteen long months ago. I return to work today, and am amazed and heartened by the lovely welcome I receive. So many students stop me and want to talk. They want to know how I am and whether I’ll be teaching them again. Not one ‘saw’ my leg in its compression stocking, nor pointed at it or asked why I was wearing the garment. I had been dreading the first few days, but everyone was so supportive and caring.

My timetable gives me Mondays off, and every other week, Fridays too. It is far less stressful and really quite a relief that I don’t have to stand all day long.

Trial ~ Month Eight

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Tuesday 26th August

We reluctantly fly back across the Atlantic on Sunday night, arriving bright and early Monday morning. Returning to our car, loading all our luggage, we then set off for Exeter where we spend the night, catching up on our sleep.

In the morning my first appointment is at dermatology, where the faint redness can still be seen, as a result of the cellulitis. Thank goodness for the antibiotics that I took with me! No other cause for concern is noted, following a full body check.

Then it’s onto the ward where I see a different trials nurse for blood and obs (my usual nurse is on her summer break). Everything is stable and wonderfully normal. Big sigh of relief!

The final appointment is with a different oncologist from my usual one (also on vacation). Pots of pills handed over, and we’re soon on our way home.

After two long days of travelling, it is so good to fall asleep in my own bed.

The end of Summer, turns into the beginning of Autumn: new season, new hope.