Category Archives: Thoughts

Mar29

Morning Mourning

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Sunday 29th March

It’s been sixteen days, twenty one and a half hours since you fell asleep and gained your Angel wings. And I cannot tell you how much I miss you and love you so, so much. I think about you every waking moment.

Every single morning a huge wave of sadness envelopes us. This has turned into the norm. And I don’t like it one bit.

We wake. We cry. We try. We ask why. The motivation to get going is just not there. Our family is broken. Our home is silent and still.

It takes a huge effort to leave the house this morning, and even as we do, I’m sobbing before we reach the end of the road. I don’t think I’ll ever accept that you’re never coming back. But I want to hold onto the good memories, I need to tell myself you have no more suffering, and I need to believe you truly are an Angel. Your soul is still with us. You will remain in my heart forever.

Spending the afternoon with our younger son and his girlfriend, yet again, is what we do, and it feels so comforting and just right. Copious cups of tea, and a lovely chicken curry are placed before us. We talk, we go out for a walk, we watch some television.

As we are leaving we have to ask him something. We want to know if there’s anything he would particularly like to be placed with his brother in the coffin. Such an awful question to have to put to him, but we need to know his wishes. He says there is a book in my mum’s attic that my father had made for them. A little book about two brothers who go fishing. It is personalised with their names.

So, having left our son’s flat, we go home via my mum’s, and find this particular book. And that then has my husband and I hugging and sobbing in each other’s arms. Such a touching thing to think of. I had completely forgotten about this book. Made for the boys in 2001, whilst we were in Australia.

We finally make it back to our own quiet house. Now I really must think of the clothes we want our son to be dressed in. You see, he’s off for afternoon tea at the Ritz Hotel in London, and he needs to look ‘posh and sophisticated’. The black velvet jacket he pestered me to buy will serve it’s purpose very well. And the white t-shirt his brother brought back from Spain; still in its packet. He will also need the Ritz teddy bear my sister bought for his thirtieth birthday. And a turquoise and white dolphin. His tablet, full of downloaded songs and television programmes. A silver St Christopher we gave to him on his eighteenth as well. All things he will need to travel safely and free from pain.

Tomorrow when we wake, we will have much more of a purpose. We’re coming to visit you, our Angel son. To sit with you. To talk to you. To tell you we love you. To the moon and back. And all the world. Forevermore.

Mar28

Rearrangement of the arrangements

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Saturday 28th March

Today we drive over to see my mum in the care home. She is looking well, having just had her hair done the day before. She is still most confused about when my brother will be arriving from America. We have tea and cakes, talk about our son, and have tears and memories to share. She is so desperately upset. Our younger son is with us, and I think all this sadness is really hard for him to cope with.

Having thought we’d made all the necessary arrangements by choosing the date of our son’s funeral, a spanner appeared in the works. Well, a whole tool box seemed to have been chucked at us.

My brother, the one in America, whom I wanted to speak at the service, is now unable to attend the funeral on Wednesday. Despite trying all kinds of combinations of transport, timings, and transfers, it just wasn’t going to work for him. He had booked to return to New York by Thursday morning, so no way was that going to happen, even if he left the church at midday, broke the speed limit, to catch a flight at eight from London. Far too many risks and what-ifs could confound the journey.

So, what to do? What to do?

I wondered, if at all possible, would we be able to move the date forward?

Only way to find out is to ask. So, upon phoning the undertaker, to explain the awkward situation, he was most understanding, and said “Leave it with me, that’s what I’m here for”.

About an hour later he phoned back, having spoken to the church Father, who would be leading the service. Absolutely no problem. Change the date to Tuesday 7th April, at 11:30am. The only slight problem would be the county council, who couldn’t be contacted until Monday, with regard to the interment. But he said he was most hopeful, greater than a 90% chance, that all would be ok.

A happy-ish end to the day. So to speak.

Mar24

We are in limbo

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Tuesday 24th March

And still the waiting continues. The coroner’s report. It’s been twelve long days without you here. We’re missing your voice, the noises around the house, your music, television programmes, books on the floor. Every single thing about you. Now they’re just memories.

It is all so still, like a desolate no-man’s-land. The waiting. For what? A phone call, a letter, a reason, an explanation. Where did it all go so wrong? You fought so hard to beat this disease.

We had so much planned when the chemotherapy was over. Building up your strength and health so you could start enjoying the fun things of life again.

But now all that we are planning is a funeral; the hymns, prayers, poems, flowers…. But, we do not have a date. And that is so desperately sad.

Our son. Our Angel. Taken much too soon.

We miss you more than words can say xxx

Mar12

Angel wings

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Thursday 12th March

I leave for school early, and my husband follows soon after with my son, to drive to Bristol to pick up our younger son, returning home from Spain.

They text me throughout the day to update their progress.

I end the school day with a Year 10 parents evening, so do not arrive home until 5:30pm.

The boys get back home soon after seven. It’s been a good day out, but everyone is a bit tired.

Younger son goes back to his flat, and elder son decides to take himself to our bed for a little sleep, until we are ready to go to bed. He likes his cuddles.

He says he is tired, and doesn’t really want to eat.

I watch a bit of television, then round about ten o’clock I get his night time medication ready.

Going into the bedroom, I see him lying on his tummy, as usual. Snuggled under the duvet.

I call to him.

No response.

I pull the covers back a bit, and he feels warm, but he is face down.

I pull his shoulder around and notice one side of his face looks a bit bluey purple.

He is not breathing.

His eyes look strange.

I shout to my husband.

I pull my son right over on his back.

I start mouth to mouth.

I shout to my husband to call 999.

I begin chest compressions.

Back to mouth to mouth.

The operator on the end of the phone tells me to put my son on the floor.

Keep going with the chest compressions.

He counts with me.

The ambulances are on the way.

I keep counting with the chest compressions.

The first paramedic arrives, and tells me to keep going with the chest compressions.

He sets up the defibrillator.

Nothing.

A tube is put down my son’s throat, and fluid is sucked out.

His lungs are filling up, because he is not breathing.

Two more paramedics arrive, and take over from me and my husband.

They keep on with the chest compressions.

Three shots of adrenaline are pumped to his heart via the chest line.

It’s not working.

Nothing is working.

My son is slipping away.

There is nothing more they can do.

He is gone.

No life left.

Our younger son arrived back at our house at this point.

He is utterly heartbroken.

A policeman comes into the house soon after.

Because it is an unexplained death, there are procedures to follow, and questions to answer.

My son is soon carefully lifted off the floor, and gently placed in his own bed.

I cover him with his duvet to keep him warm.

I hold his little hand tightly in mine.

I try to keep him warm, but his face is now really cold.

I stroke his cheeks and kiss him.

The colour has drained away.

Almost a waxy, creamy, white.

I go and get his hat.

He always slept wearing one on his head.

The back of his neck is still warm, as I pull the hat over his hairless head.

I cannot comprehend what has happened.

I talk to him.

Telling him to wake up.

Willing him to return.

Wanting him to hold me.

Pleading for him to open his eyes.

I’m still holding his hand, trying to keep him warm.

I cry silent tears.

His small little body could take no more, and his tiny heart stopped beating.

I know there are two men waiting outside to take him away.

They suggest I leave the room.

But I can’t.

I want to see that he is looked after.

And they do treat him with the utmost dignity and respect.

Making sure he is still wearing his hat.

They open a white body bag on the floor and carefully place my son inside.

I hold his hand for as long as I can.

Slowly the zip is closed over him, and then he is gently lifted onto a stretcher and strapped in place.

Another cover is pulled over, and then he is taken downstairs.

We all walk outside as he is put in the coroner’s van.

I touch his body again and say goodbye, goodnight.

He is driven away just after half past one in the morning.

I cry and cry and cry.

I cannot sleep.

I can feel him in the house with us.

When we do eventually go to bed, we put his dressing gown between us.

We try to hold onto him.

To keep him close.

Sleep peacefully my darling.

I miss you so very, very much.

We love you with all our hearts.

Mar10

Coming home

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Tuesday 10th March

Younger son has decided to cut his Spanish holiday short, to begin a job here at home. He has booked a flight for Thursday afternoon that arrives in Bristol about 4pm.

He needs the work, and of course the money that goes with it. His girlfriend will remain with her family in Spain for another couple of weeks.

It will be good to see him again soon.

Mar7

Visiting Lamorna

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Saturday 7th March

Today my husband, son and I drive to visit my Mum in the care home. We decide to take her out for lunch, and go for a little drive around.

We visit a supermarket on the way and son decides he is better off in a wheelchair to propel himself around. My mum gives my son £5 to spend, and he comes back with a big mother’s day card for me, and a packet of sunflower seeds for himself. He says he is going to grow the biggest sunflower ever.

We drive down to Lamorna Cove to watch the waves, then on to afternoon tea at the pottery. It is a beautiful sunny day.

Having dropped my Mum back at the care home we head home. The evening is completed by an amazing fireworks display just in front of our house.

Mar6

The penultimate day case chemo

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Friday 6th March

We seem to wait longer than normal to be taken into the chemotherapy bay, where firstly bloods are checked, amazingly coming back in a little over fifteen minutes. All is good to go. We know what to expect, and two hours passes in no time.

The choice for dinner tonight is at a fish and chip restaurant on the way home. However, son orders sweet and sour chicken, enjoying most of it, then a knickerbocker glory, which really proved to be too much.

Tired and full, we drive home, back to our own beds.

Feb26

The final six day slog

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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.

 

Feb13

More day case infusions

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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.

Feb5

Chemo Continues

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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.