Monthly Archives: December 2014

A day-case visit for son


Wednesday 31st December

A New Year’s Eve visit to a new area of the hospital so that my son can have a quick infusion of chemotherapy. The day case unit is busy, we are seen on time, my son picks a reclining chair by the window, and is soon hooked up to the toxic liquid that is hopefully shrinking the tumours in his body.

Everyone here seems friendly and kind; nothing is too much trouble. We are visited by a doctor and a dietician to check on progress and general health. It seems my son has lost over a stone in weight in a little over four weeks. He is prescribed some high calorie shakes with extra vitamins and minerals to give him a boost!

Four hours after arriving, we are ready to leave. Lunchtime beckons and son says he is really hungry. However he can only manage half a chicken nugget, three baked beans and one and a half chips, plus a few sips from a 7Up. A rubbish choice for lunch, but it’s what he fancied; when it arrived though, he just couldn’t face it. He says the taste in his mouth is horrible and metallic, and he has lots of little ulcers. Poor, poor chap.

Hair Loss


Tuesday 30th December

My son is on Day 28 of his chemotherapy, (CBOP-BEP), for the treatment of testicular cancer, as unfortunately tumours have spread to his brain and lungs. His loss of hair has continued, covering the pillowcases and sheets, and the shoulders of his clothing. He reluctantly allows me to use the clippers with a grade 2 this afternoon, and I trim the remaining hair.

It is so upsetting to see him like this. Losing one’s hair really marks you out as a cancer sufferer.

The Festivities


Christmas Day and Boxing Day . . . . . .

So, here it is, Christmas morning, and Santa’s been! During the night, whilst in a fitful sleep, a small present was left on the table: Friends of RCHT had been super busy, and most thoughtful. A small packet of tissues, notebook and chocolate ~ a lovely gesture!

My son is still being pumped full of chemotherapy, but is quite excited to be escaping later on this morning. The last bag of fluid is due to finish at 11:50am, then we wait for the 4-day pump to be attached to his chest tubes, containing slow release of bleomycine.

As the morning passes, son begins to feel a bit sick, perhaps the combination of the drugs and Christmas! Hopefully this won’t delay our departure.

Just after twelve thirty we are driving home, to swap our hospital bags for those containing presents for the family. A quick wash and brush up, then we head to my sister’s house for Christmas dinner. We didn’t know how much of the days’ festivities could be enjoyed by our son, but as it turned out, he was able to join in for most of the remainder of the day. Dinner, crackers, present opening, board games, television, Skype sessions with my brother in Chicago, afternoon tea and Christmas cake. He kept going strong until nine thirty, then the weariness hit him hard, and we could see that he was totally wiped out. We got him home, and into bed an hour later. Happy-ish, that he had actually been able to enjoy a normal-ish Christmas.

Boxing Day seems a little flat, but we go out for a drive in the car, drop in on my sister for a cup of tea, then visit with my Mum for a chat. Our son is quite perky, and stays awake for the whole time, snacking on small amounts of food; an easy going day, relaxed and trouble-free.

Chemotherapy for Christmas


Tuesday 23rd December

A room is ready in the ward at 4:00pm for my son, and I will be staying with him for two nights. He is to have two bags of saline to flush through his system tonight, (six hours each), then the chemotherapy starts in earnest early tomorrow.

He lays on the bed looking at the internet or the television. He eats a small sandwich for supper, then decides it is time to sleep.

He becomes really upset and devastated, when he looks on the bed and realises that he is starting to lose his hair.

No bald patches, just many, many hairs appearing on the bedcovers.

He does not sleep well at all, tossing and turning for most of the night. The saline bag is changed at 3am, and we are still awake! A little after five he tells me we need to talk. There is such a lot of hair on his sheet.

“I’m going to die. That’s why my body is shutting down. You can’t cheat death. I’m dying. Just let me die. There’s no point any more. Just respect my wishes and let me die. I don’t want anyone to see me”

This shouldn’t be happening. Not on Christmas Eve, not now, not ever.

The saline bag is changed at 8:45am, and then the cocktail of chemotherapy commences.

10 minutes of chemo, 1 hour chemo, 10 mins flush, 6 hours chemo, 10 mins flush, 3 x 6 hours chemo. Twenty-five and a half hours, if there are no breaks, and no waiting or delays in between. We should be finished some time after 11am ish, tomorrow.

During the day both my husband and younger son come to see us, staying a few hours, talking, cuddling and just passing the time, keeping us company.

It is a strange and different Christmas Eve. There are no decorations or tree in the ward. I suppose people in the hospital with cancer don’t really have a ‘Happy Christmas’, they just come here to have their chemotherapy, lose their hair, and be sick. Nothing really to celebrate.

But, we will be going home. To celebrate. To be with family. To laugh. To love. To live.

Private Pity Party


Monday 22nd December

Today I feel particularly rubbish, and that is most unusual for me. I am sad, a bit tearful, and find it difficult to hold things together.

I am having my own Pity Party. No one is welcome.

We should have been flying to Miami today, to spend two weeks in the Florida Keys, having a fun Christmas and New Year.

We booked the holiday as a sort of celebration, as I had come to the end of twelve months on a clinical drugs trial. Malignant melanoma. The break was to be my little treat.

What we hadn’t foreseen was the dreadful whirlwind of events now overtaking our lives. Within a month, our family life has been completely turned upside down. Testicular cancer. Orchidectomy. Brain tumour. Lung tumours. Chemotherapy. A new vocabulary of symptoms being applied to my elder son. He already has Aspergers, Pierre Robin Syndrome, learning difficulties. Why on earth has all this crap been thrown at him? As if his lot in life is not hard enough already.

Yes, it’s my Private Pity Party. No one is welcome.

The last week of term


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.

Month Twelve of my Clinical Trial


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


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


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


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.