Tube is Gone

After 20 months, Joshua has finally had his nasal tube taken out.

He has to take all his drugs by mouth everyday and was unreliable in this department; so having the tube was for us to be able to enforce it. Getting him to accept the tube was one of the hardest parts of treatment so I didn’t want it to go unless we never had to put him through that again. Obviously I don’t know the long-term future. But for now, it looks unlikely.

The test was to get through the monthly steroid course. He gets depressed on these, and then prone to rejecting his medication. But we were regularly going for weeks without actually using the tube. So it was starting to feel a bit pointless.

Having it is also a bit annoying. The sticker would need replacing every few weeks. Tears are a constant feature of life with a three-year-old and their demented, unreasonable behaviour.

So the sticker was usually half hanging off or getting mucky. And the fuss made about having a new one was off the charts. Literal screaming and thrashing about just to gently remove a plaster.

We had to see if we could bribe our way through 5 days of steroids. If we could get through that, we could take it out.

It’s amazing… the power of chocolate combined with a bit of parental determination.

The weird bit is, when the moment came he was fighting me over taking it out. I guess it had become a strange part of life and change is unsettling.

It’s nice to see his face again, with no apparatus.

Our Day to Day

“How are things now? Is Joshua still on medication?” I get asked this sort of question, quite a lot. Friends are often surprised that he still has chemotherapy every day. I can see that it would be confusing; the treatment plan for children is so very different to anything like the regime an adult would experience.

So where are we up to? His three year treatment plan is split into five chunks. Joshua has been in “Maintenance” since July 2020. This is the fifth, final (extremely long) phase and it will last until Jan 2023. It has to last this long, to prevent the leukaemia coming back.

In Joshua’s case it is a low risk… but there is unfortunately, the shadow lurking nearby, that he could relapse during treatment. Or after it. The consequences of this are huge. But we get through this one by just not thinking about it.

The first eight months of this journey were such an unfathomably difficult time. Relentless medical events were occurring.. and we were constantly going in to the oncology unit for this, that and the other. Plus the hospitalisations due to infection. So I had no expectation of this maintenance phase being any easier. But it is. It’s more manageable. It’s not normal, but it’s not horrendous either.

This is our schedule:

WEEKLY

Joshua takes cytotoxic chemotherapy every day. It is administered orally, by us, in the evening. Apparently it tastes like strawberries and he now willingly squirts the syringe into his own mouth. I still have anxiety that he will spit it all over me or Louis. It’s not supposed to touch our skin. But clearly he doesn’t understand that.

Every Wednesday night, he has a lime-coloured drug (Methotrexate) added in. But he doesn’t like the taste of this one, so it goes down his tube.

On Saturdays and Sundays, he has a general-purpose antibiotic twice a day. Just to dampen down infection risk. This one tastes like bananas and is deemed acceptable.

One day I’m hoping Joshua will accept swallowing all his drugs so we can get rid of the tube. He’s still a stubborn 3yr old though, so can’t see that happening anytime soon. Reliably.

Each week we have a visit from one of our nurses; they come to do a finger prick blood test. This is to monitor his levels of haemoglobin, platelets, neutrophils and white blood count. We are mostly interested in his resistance to infection, because if this drops too much, he has to come off his chemotherapy to let that recover.

MONTHLY

Each month (every 4th Friday) he has intravenous chemotherapy through  the port in his chest. Sometimes we go in to hospital for this, but through the pandemic, it was often done at home by our nurse. On that Friday night, he starts a five day course of steroids. Groan. The bit we all come to dread.

Especially if it aligns with me being pre-menstrual. Everybody’s shouting.

TRI-MONTHLY

Every three months, he goes into hospital, and has a lumbar puncture in surgery. This is to inject chemotherapy into his spinal column, to stop leukaemia cells hiding there. It takes all day, pretty much.

GENERAL COMMENT

Despite it thinning out again now, his hair grew back in July last year. Some people misinterpret this though, and assume he is no longer in active treatment. As said, he still has the tube, which gets regularly pointed out by other children: “what’s that in his face mummy?” It’s just natural curiosity but it makes me inwardly sigh, regardless. Luckily Joshua doesn’t seem to notice this.

In some ways, it is useful to have the tube. It’s a visual cue to parents I don’t know, that things are not exactly ok. Maybe it prepares them a bit for when I abruptly remove him from any physical encounters with other children.

He’s usually quite a busy bee, but does get out of breath easily and I’ve noticed that he can’t keep up with his friends. He has sadly picked up on this too.

Outside of the relentless trudge through seemingly endless medication…. A continuous challenge now, is going to be getting society to stop assuming that he’s fine, that all is well. To manage expectations of him and remember that he isn’t normal. Not yet.

March 2020

This time last year, we tuned in to Boris’ 8pm announcement that lockdown would begin today on the 23rd March… this just happens to be Ben’s birthday. Good times.

I had already pulled Louis from school and we had stopped seeing people. I’d been reading the science (unlike the government) and just thought, this is nuts. It all felt so unknown, so… overwhelming.

We had our first week of home-schooling. I wouldn’t label it a massive success.

It’s extremely tempting to feel rather depressed about how things are now in the UK. It’s been such a long time since there was a normal, free way of living. But when you look back… it does feel different.

Maybe I’ve just adapted to never doing anything fun. Or maybe, despite all the tragedy and hardships… there’s a bit of hope. For our family, in March 2020:

Joshua was on the brink of starting intensive chemotherapy in the MIDDLE OF A NEW PANDEMIC.

Ben stopped working because we were shielding.

Every morning he did a Joe’s workout in his underpants. Not the children, they were slumped on the sofa.

Kindly neighbours and fantastic friends left food parcels on the doorstep.

I did get deliveries, but when you can’t pop to the shops, it’s easy to cock up the flow of perishables.

Some days: “oh dear kids, it’s just bread and butter for lunch”.

The bloody biscuit baking got out of hand.

And the Minecraft. This experience has turned my older son into a pasty, sunlight-shunning gamer.

Every morning, I woke up, opened my eyes and had that realisation. Oh, it’s yet another one of those days.

During the not-leaving-the-house-thing, we ran out of alcoholic beverages. To solve this problem, I started a monthly subscription with the local wine seller; a delivery turned up that afternoon. This is something I do not regret.

There was just no structure, and it was weird.

Ben was worrying about his colleagues and feeling like he had let them down. (I did tell him that was stupid).

It was all incredibly daunting. So, this year… It is better.

New Port (V)

After Christmas, and 5 weeks with Joshua not having a port in his chest, he was scheduled to have a new one put back in at the end of January. Given that it’s been a source of problem (despite it being a core part of the solution) Ben and I did chat about whether he should have one at all.

He only currently needs intravenous treatment once a month. But it is once a month for years. If he gets ill and needs antibiotics, then he will need it for that, too.

The alternative is to put a cannula in his hand. But children have small veins and pudgy hands; they are tricky to insert. Plus it is uncomfortable and there is terrific resistance from the child. He did manage to rip one out once and there was a dramatic blood spurt over the bedsheets…

They are also not very reliable. They fail easily – the medication stops flowing in, if they bend their wrist. I have had a few sleeps in hospital excessively disrupted with the machine beeping “Occlusion! Occlusion!” every five minutes.

When Joshua was in hospital over Christmas 2019, he had 4 different cannulas in a week – in both hands, crook of the arm, feet. Putting in new cannulas at 2am is utterly undesirable. The goal at night is to keep the child asleep, not dramatically wake them up.

In our chat it quickly became obvious that he does need one.

So I took him in for that operation and had the usual pre-operative chat with the surgeon beforehand. I mentioned that Ben remembered when the original one was put in, that Joshua had a small-sized chamber inserted and that maybe it could be a bigger one now?

There was lots of “oh no no no, it would definitely have been the size 6 for his age. Size 8 is for the over 10yrs. Oh no definitely. He would have had the size 6.”

Then his young registrar shuffled in with Joshua’s medical notes, and pointed to the fact that actually, Joshua had a 4.5 which is the neonatal size.

Oh.

(It wasn’t put in by this surgeon, by the way.)

So now I’m wondering whether a lot of our problems with his port actually stem from the fact that it was quite a small chamber. When the nurses are trying to stab it with the needle several times and missing it (at times he was quite chubby due to the drugs) that this could have been a source of it getting infected.

If this is the case; I’m hoping for better outcomes now, with its future use.

Ben’s colleague Richard was the anaesthetist; it was nice to see a friendly face. Because Joshua doesn’t have a port, they had to prep his hands for a cannula, so they can give him a general anaesthetic. This is just putting some numbing cream on the back of the hands for half an hour in advance, which is then covered up with bandages to stop him ripping it all off.

Joshua is quite a dramatic character and this was not going down well.

He was desperate to rip off the bandages, and so I was holding his hands apart. He was stood on my lap screaming in my face, and then headbutted me hard on the lip.

“Ooh he’s spirited, isn’t he..” says Richard.

December’s Port Problem (IV)

(Shared family breakfast via video call, whilst Joshua recovered in hospital)

As I have explained here, last year we had been experiencing problems with Joshua’s port. For some inexplicable reason, it settled down during the summer, but was happening again by the autumn.

[What is a port? see here]

Every time he had his port accessed, he got a spike in temperature, which has the unhappy consequence of a 48hr stay in hospital. We all want to avoid this, for many reasons.

In late November, he was having his monthly chemotherapy dose, at home through his port. By tea-time, he felt a bit hot and was behaving strangely – putting his head on the table. Not long after that, he was 39 degrees. Luckily Ben had arrived home from work, so with a heavy heart, we went to A&E.

Now he’s over 3yrs old, Joshua is becoming much more conscious of what is happening. Ben and Louis dropped us at hospital, but he was bewildered by the fact that they were going home and he had to stay. “Why is Louis going back to the van? Can I go home? WHY CAN’T I GO HOME TOO?”

[angry face]

“I WAAAAAAAAAAAAANT DAAAAAADDDDDDDDDDDYYYYYYYYYYYYYY”

This escalated to screaming in my ear in the reception area, whilst I tried to answer questions through my muffly mask to the nurse behind a screen, in a muffly mask. I don’t think I’m deaf, but I didn’t realise until now, how much I rely on a bit of lip-reading. Pardon…. (pause…) pardon? Gets embarrassing after the third pardon.

He was swabbed for many things; up the nose, back of the throat, up the bum, poor lad. His compensation was chocolate coins, which my friend Sam had dropped off in a food parcel; luckily for me.

We got off the ward relatively quickly this time, mercifully.

What was looming on the horizon though, was the next dose of chemotherapy, scheduled for Christmas Eve. I was revving up to ask for that date to be changed; otherwise we might be inflicting a hospital trip on ourselves for Christmas Day.

In our telephone chat, Dr Rachel started revisiting the long-term solution of getting his port removed. It’s a tricky one, because we didn’t want to inflict any more surgery on him than he actually needs. But this constantly-getting-infected is unsustainable… and the whole idea of him existing with potentially nasty bacteria sculling around in his body, didn’t feel acceptable.

To avoid Christmas and align it with when he was due to be having a general anaesthetic anyway, they pulled his schedule forward by a week, to the 18th December. He had his chemo at home the day before his operation. But, as is the pattern, he spiked a temperature and we had to travel in to A&E at midnight. We had gone to bed because he’d shown no signs of anything earlier. So, a sleepless night for Ben and Joshua.

Our doctors would usually cancel an operation if the patient has a temperature. But given that the solution for Joshua’s 39 degrees, is to remove this pestilent port, it went ahead anyway.

It’s hard to convey how stressful this all was at the time. It’s quite dramatic having to get out of your pyjamas with Joshua crying, in the middle of the night. I didn’t go in to A&E, but didn’t sleep well either. Worrying about Joshua being ok and whether his operation that we’d been planning for, would go ahead. All under the claustrophobic cloak of Covid that just makes life so much harder. I wanted to be with Joshua before he went in to surgery, but Louis had to be picked up from school. He can’t come in to hospital, and isn’t allowed in anyone else’s house.

I exploded in tears at my friend.

I was with Joshua when he came around from the operation – he was pretty disorientated and angry. Told me to go away. But as the keeper of the snacks, he must have realised this ultimately wasn’t in his interests.

We had a night in hospital. He recovered, his temperature dropped and we achieved his Christmas at home, which I am grateful for.

Christmas 2020

The twinkly lights have been removed and Mrs Christmas is trying to put her feet up, but Joshua is still incessantly singing “Jingle Bells.. batman smells, jingle all the way!” ..right into January.

Last Christmas he was admitted to hospital and I have been rather obsessed with avoiding that this time.

In December 2019, we were feeling relieved that his first block of treatment was over; slight smiles were occurring at the corners of our mouths.  And then at 2am on the 20th December, I woke up because (sleeping next to me) Joshua was very hot and looking distressed. I hurriedly packed our bags, took a taxi to A&E and didn’t get discharged until the 27th.

He was struggling with RSV, a common but quite nasty respiratory virus.

He had an unrelenting temperature of 40 and just lay silently for days, sweating and breathing heavily. At one point his stats looked so bad on paper, that he was inspected by the intensive care nurse. She fortunately decided he didn’t need to be moved to ICU. Just at that point he had requested a few crisps, which reassured me that people who are intensely ill and getting worse, don’t usually fancy nibbling salty snacks.

All four of us had spent the day of Christmas Eve stuck on the ward… then Ben and I split a really-quite-awful-ready-meal between us, before I took Louis home. I still remember this time as one of our worst moments. Waking up on Christmas morning with only half your family, when you should all be together; full of excitement about the broad beardy man’s inverse burglary.

With that memory hanging in my mind, I was determined that somehow this year would be different. Well, as much as I can influence anything at all. There were troublesome medical events occurring, but I’ll talk about that separately.

Ben’s parents live locally and a quiet Christmas with them had been mooted. But with all the national Covid chaos there was hand-wringing, hesitating.. and ohh I don’t knows… maybe a chicken sandwich outside?

Naturally, under these circumstances, it all came down to the wire and a last-minute nasal swab. We got the green flag on the 23rd. Then I panic bought some pheasants, which was all the local butcher had left, just before shutting.

However, despite all the tensions and restrictions, there were some fond festive moments.

Every year, with Ben quietly eye-rolling, we drag an oversized hulk of pine into the lounge. The boys seem to engage with bejewelling it in baubles; clustered together, on just one side.

Joshua and I made a ton of mincemeat with a lot of brandy. You have to enjoy chopping apple into tiny weeny bits. Brandishing a sharp knife is pretty good entertainment though, if you are three years old.

A few days preceding this, Ben made a batch of mince pies from a jar that had been knocking around in the cupboard. I worked out after all the family had eaten one, that it was probably five years old. They smelt funny whilst cooking in the oven. The internet wasn’t helping… “Bitter almonds contain toxic poisoning which can cause accidental death”. I then spent the evening panic watching the children. We all seem to still be here.

I do love Christmas eve. Even in 2020… It’s the anticipation.

With jeans under sequin skirts, I met my friend for 5pm prosecco chat outside, around a re-purposed flaming bbq. Then back home for HOURS of present wrapping. When I’m still up selotaping at midnight, I regret not being an organised person.

Joshua is now at that age where he understands the Christmas mythology and is excited by all of it. The snow! The reindeer! PRESENNNNNNNNNNNNNNNNTS. Louis is nearly eight and very suspicious of the whole Santa story, but is probably suspending his cynicism because he doesn’t want to risk his haul of goodies not appearing.

They were both up before daylight in a frenzy of ripping.

Under a welcome blue sky, we trundled to the grandparents’ house for a sleep-over. This was wildly exciting to two small boys who pretty much haven’t stepped foot in anyone else’s house this year.

Most of the big day, when not gorging on rich food, was spent fighting over who was riding the buzzingly loud, electric motorcycle present. A total bargain from Aldi apparently. In Granny’s house, you can go round and round and round in a circle weaving through the rooms.

This motorcycle is actually a quick response ambulance, and Joshua is a very attentive medic. “I’m here! Do you need help??” A stethoscope is then swiftly whipped out from the pannier (he’s very familiar with how to use one) the patient is given a lot of hands-on time and the diagnosis concluded as: “you have slugs in your chest.”

Hmmmmm… too much inappropriate viewing of Harry Potter perhaps.

Our Christmas gifts this year, were various types of skateboard. Paved footpaths with varying slopes are now our main source of entertainment in the Time of Virus. So that’s where I will be now, in this hinterland of strangeness… Standing on the pavement as the Health & Safety Monitor, in our allotted hour of exercise.

Happy New Year.

Give Blood?

I haven’t been to give blood since about 1999.

I’m rather embarrassed about that. In my defence, after university I kept visiting Africa. Back in the noughties, when you had travelled to such exotic malaria-ridden places, you were required to wait for a year before it was safe to donate. Somehow the years just rolled by.. and then children came along to distract me from my civic responsibility.

I finally went for blood-letting last week.

A blood transfusion was the first thing that happened to Joshua when he arrived at hospital. Leukaemia is a blood cancer and before diagnosis, he was somehow functioning on a ridiculously low number of red cells, which is why he looked incredibly pale and was falling asleep everywhere.

Someone else’s blood put the pink back in his cheeks and gave him energy for bouncing around. In the first six months of treatment, he received four separate transfusions. He also had an infusion of donated platelets, which looked like a bag of orange jelly.

He wouldn’t have made it through chemotherapy, if it wasn’t for the gift of blood. It has played an essential, supportive role in his treatment. There may come a time in the next two years, where he will require another donation.

But it is obviously not just cancer patients who need it.

My sister-in-law Sophie collapsed at home due to a haemorrhage, a few days after the birth of her daughter Evie. She was blue-lighted back into hospital and given pints of blood in theatre. Unfortunately, once you have had a transfer, you are excluded from ever donating. As Sophie says: “this is excruciating; I was so grateful and I want to donate back, because I have a rare blood type. Had I known this before, I would have made more effort to donate, so I could help others.”

But never has donation been more urgent than it is now with the double whammy of the winter flu season and this enduring pandemic.

Unlike in the 1990s, signing up is all online now of course, and actually pretty efficient. I just answered a few basic questions and registered my details. Then it revealed where the multiple local venues are, and I picked a convenient time.

For Sophie and Joshua, someone’s donation has been literally life-saving. The really great bit is, that to be an actual life saver, you don’t need to have superhuman strength, swing off webs or drive the batmobile. All you have to do is lie around for a while and snaffle complementary biscuits (to keep your strength up). Now that’s my kind of wonder-womaning.

Have you signed up to be a sloth superhero..?

www.blood.co.uk

Birthday

Halloween baby is now 3.

This year, despite everything… an emotional, articulate, loud and boisterous boy has emerged.

His birthday marks roughly one year of cancer treatment. Last year, as he picked the smarties off his 2nd birthday cake, he was starting to show signs of becoming ill. Children’s birthdays are always special, but his birthday this year had a particular resonance. It felt important, on many levels.

The ritual marking of your child actually getting older, becomes valuable when not getting older, is a risk.

And after having to put up with so much: sickness, pain and discomfort, learning to walk again, continuous medicalisation… and just generally not experiencing a lot of the fun and adventure you would expect for a buoyant two year old. I wanted him to enjoy it. And for us to celebrate him.

We wanted a grand glittery occasion involving everyone in his life. But Britain’s new (utterly shit) pandemic lifestyle, prevents that. And in the back of my mind was worry about Lockdown 2.0.

I’m not sure why, but Joshua had latched on to the idea of partying a while ago. He has been chattering ceaselessly about “My Party” for months. So it felt good to be able to make that happen, even in a limited way.

In the end, we had a pre-emptive strike a week early, with two little VIPs.

We spent the early part of the Sunday just the four of us; baking chocolate dinosaur cake, dressing the party room with Mexican decorative paper skulls, pumpkins and a massive strobe light. (Pre-Covid we were in a pub band, so this is fortuitously knocking around in the basement).

Three-year-olds are not compliant with organised games, so it was mostly lots of rolling around, wrestling and freestyle Kate-Bush-dancing to very loud music. Funk and Disco tunes, obviously, as I am in charge of the playlist. But Joshua’s favourite track is “Fart”. Bass heavy, thumping drum beats, with squelching, rhythmic squeaky fart sounds and occasional swearing.

Entirely appropriate for small children.

He loves it. What can I do.

Meanwhile I prepared the birthday tea of “sausage and chip”. The only food he will contemplate eating, currently. Whilst dousing the other two mothers in a not-insignificant volume of cheap prosecco and gin.

Parenting went a bit slack after that and there was some trouser-wetting of unattended children jumping off sofas in the lounge. Cries of “I need the toilet” went unnoticed.

There will no doubt be more of that in future, though. I remember unconscious urination being a strong feature of university parties in the 90s.

Joshua now thinks that birthdays actually last a week, because throughout the half-term holiday unexpected guests kept dribbling in for playing, fart dancing and present-opening. Mostly outside in the rain by the end of the week, as I got increasingly worried by the UK’s rising covid-rates.

He had a great time. I had a nice time watching him having a great time. But there was absolutely unfathomable amounts of washing up. Next year I’m hiring staff. Or something.

How Can I Help?

(Quiet early mornings in our local park before anyone else gets there..)

How Can I Help?

Your child getting a cancer diagnosis is one of the most frightening journeys a parent can go on. Alongside this, it is a constant juggling act of school pick-ups and who is going to be in hospital, whilst trying to shoe-horn the basics of life in to keep a family running. We have really leant on some of our family and friends (particularly local ones) which has been invaluable. I have now heard a few people say: I really wanted to help, but I didn’t know how. So I have had a think and come up with a few ideas, that may be of use to someone.

What Can I Say?

When witnessing something as shocking and overwhelming as childhood cancer, some people clam up. Friends who have been part of your life for years, become strangely absent. It probably comes from a good place, but “I didn’t want to bother them” translates into hollow silence.

If you have a friend going through difficult times, acknowledge their situation and just be in touch. Even if you don’t know what to say; something fumbled but heartfelt is better than nothing at all. I find you can’t go far wrong with “I’m so sorry this is happening”.

In the whirlwind chaos of the first month, I most appreciated messages that didn’t require a reply. I fancy we should return to the slower-paced 1990s and send letters in the post. Unlike a text message, no-one expects a reply to their card. But if you haven’t got time for being a lady of letters, a “thinking of you today” message will do just fine.

Bring Food

The fact of life is that we all need to eat and somehow nourish the picky children. A leukaemia diagnosis begins with a few weeks in hospital, and then shifts to intermittent periods of hospitalisation, whilst also being treated at home. Achieving the shopping, chopping, cooking and clearing up afterwards, under these circumstances, can be exhausting and stressful.

Offering food is a simple way of removing an everyday problem.

Parents don’t get fed in hospital, only the patient. So at times I find myself living off Joshua’s rejected toast at breakfast and a few leftover chips at tea-time. Or just not eating at all.

Except for when we were living on the ward for the first few weeks; one friend kept emptying out meals she had made, from her freezer. Chipping bits off her defrosting Thai curry kept me going for a few nights. Another Wonder Woman brought in boiling hot fresh-from-the-oven lasagnes to our room. I will never forget this.

As the weeks turned to months, friends left meals on our doorstep. One lass didn’t tell me that she’d done that and I nearly stuck my foot in her glass bowl of chilli when I went out.

Visit

It’s a very long day with not much to do in an isolated hospital room; especially as the sleep from the previous night is likely to have been disturbed. When you have a poorly young child, even having a shower is tricky, because you can’t leave them alone. If it is possible, ask: “can I come and sit with you in hospital?”

They will be very glad to see a friendly face, equipped with an activity book that can break up the relentless televisual entertainment.

[*Clearly this isn’t feasible under current Covid-conditions, but when that has hopefully changed next year…*]

My friend (who worked in the same hospital) would always bring me a coffee before her shift started. Which was a very welcome start to a tiring day. One Friday evening, Ben’s mate brought him a curry and a surreptitious beer. They ate together and he kept Ben company. When you would have been sat alone in the dark with only the gloom of the TV for company, these gestures mean so much.

Families in this predicament often have other children; I can’t even count the amount of times Louis has been picked up from school by other parents and occupied at their house, whilst we were delayed in hospital. So, plugging the gaps of childcare for other siblings is a significant part of assistance.

The Long Haul Ahead

In the first few weeks of treatment, I could have employed a PA to cope with the volume of enquiries and found it stressful to keep up with the demand for answers. At times, I felt like lobbing my continually-beeping phone out of the window. (Helpfully, the windows don’t open on the oncology ward). There were moments where I couldn’t even face updating my mother on the latest rapidly-changing developments.

This is where little messages of support (which didn’t need me to respond) were most appreciated.

But then, as the months roll by.. everyone quietly moves on. The friends and family drop away; you really don’t have the energy for reaching out, and it becomes a long, lonely road.

All the usual things from life with a young family, have been stripped away. Often one parent has given up work to care for their child, or (as in my case) the loose career choices they were making now their child was meant to be getting less dependent, have had to be shelved.

There are no activities. All the fun things I did with Louis – gardening group (relentlessly watering plants and looking for elusive newts) soft play, gym club, endless sunny afternoons in the park packed with carefree children. All that has gone.

It’s a very quiet existence.

Our situation is not as acute as it was, but there is still chemotherapy rumbling along, visits from nurses, the threat of getting ill and requiring hospital… The stress and worry is still there, like the low hum of an engine; never silenced. We need our community now, just as much as we have ever done.

Holidays

“Right.. ummm… how can we make holidays happen, Ben?” I began asking in late July. Essentially we can’t plan ahead, or leave the UK until summer 2023.

I don’t want to be maudlin. It feels odd to be moaning about vacations under these life-threatening circumstances, but most people consider these to be the high points of life. The time you get together to stop the clock and have fun as a family. To not be able to look ahead through the difficult times and have the prospect of exciting adventures for the boys, is an unfortunate casualty of cancer treatment.

It will always be a last minute thing. If Joshua is ok.

It doesn’t mean we can’t do some nice simple activities, but we can’t invest cash. Or we can, but you will lose that £1000 you’ve paid for a holiday home at the coast, if it turns out you can’t go.

Or the other scenario is… you go away, he gets a temperature. We then have an emergency few days in Trelisk hospital which over-runs the time booked into the holiday home and end up essentially homeless in Cornwall. What then? I can stay in hospital with Joshua, but Ben and Louis. Where do they live until we can travel home?

In this time of Coronavirus, I didn’t fancy camping in the van with communal toilets and sinks.. there were NO pitches available anyway. I therefore scheduled in some things that could be cancelled without consequence. Long-awaited trips to visit friends.

I thought something would come along to trip us up, but luckily it didn’t. Maybe Louis not having been in school for months, cavorting with lots of bugs, set us up well for a period of good health. So after nine months of never leaving our house, we have ventured out and been on a slight south-west road trip.

When it was roasting hot we were in the Malvern hills.. and then moved on to the coast, to breathe in the sea winds.

We have ridden bikes.

Played in big buckets of soapy water. (the children, not me, obviously)

Run in to the sea… run out of the sea… run in to the sea… shouting woahhhhhhh.

Been on short country walks with a lot of toddler-moaning.

Drank a bit of wine. (Ok… I mean quite a lot of wine).

Swung on rope swings.

Baked cakes (guessing the weight of ingredients and mixing it in a saucepan) whilst storms lashed the windows.

Warmed my face in sunshine. Read absolutely no pages of my book. Sigh.

Eaten fabulous home-made pizza.

Holidays can be an exhausting business with little people, especially those enduring treatment. I have paid for this in sleep.

But having a change of scene after so long, has been cleansing; and watching their smiley faces whilst enjoying the simple pleasure of playing in the sea, was precious. I can only remember my time at the beach from when I was a small child. I have no memory of what else I did with life in the other 50 weeks of the year.

When the future is uncertain, we have to grasp the chances that appear. So be warned friends, we’re probably coming to visit.