One dragon slayed

Yesterday we had the call back appointment with Jase’s surgeon. They are confident that the tumour (a type 3 tumour – anyone know what that means? – just googled it, wished I hadn’t!) was contained within his left kidney and so it is all gone!!! They are happy with his recovery, and have said he can drive when ever he is ready. So, Dragons 0 Robinsons 1!

Our next battle approaches. Jase has been transferred to an oncology consultant, and we await *sigh* the appointment, followed by another scan in May to look at the two enlarged lymph nodes around his aorta, and then chemo starting after that.

So it looks like we need to put the next dragon in a box for a bit, get on with our lives, and make sure he is fit for the fight.

Teengirl is also going through it this week, with four one hour English controlled assessments, two teeth extractions, her grade 4 piano exam, a netball tournament, her brace fitting and a piano recital.

We are looking forward to the holidays already!

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Calm, grumpiness and Jerusalem

So the boy is home, tired, smelly, but home and full of stories of fencing, climbing, canoeing, sailing, cycling, midnight walking, and helping friends struggling with homesickness. He was made up that Jase was able to be there to meet the bus, we all went for tea in the pub after, it was lovely. We have had a quiet week at home, a bit weepy for me, me working and him upstairs in bed, Teengirl nailed her grade 5 theory exam (we hope!), anyway it is done. Piano practical next week. Jase has been getting better every other day, one day of feeling better and doing a bit more, then the next day zonked out again. But getting better all the same. A little shuffle to the shop for the paper and chat with folks along the way. A trip for a pint to watch the match. So we are calm, he is grumpy when he is tired though, I think we can live with that. But we are happy in each other’s company, all of us. We have become kinder to each other, slower to criticise, we have more time to listen and take account of each other. Juggling everyday events to get everything done is proving tricky, but I’m judging success by everyone being safely home in bed by the end of the day, having (hopefully) done their stuff.

This evening we had our WI committee meeting here, it was really lovely to see everyone, hear their news, accept their help (and homemade icecream – wow!), I think I will go to the meeting on Wednesday. It is a joy to be part of such a fab group of women.

Next Monday is still in a box, keeps trying to escape, raising its lid every now and then, but not able to give away any clues. Gonna stick a brick on it.

Oh, the fire has gone out, night all xx

Ben’s visit, another gift x

Ben bobbed in for tea last night on his way from home to Edinburgh for work, and today he came to stay on his way to Manchester tomorrow. Jase was really happy to see him, they interact in such a natural way, its good to see. No need for much talking or many explanations, we are just glad he is here. I ranted at/to him by text the other night, I love his gentle inferred understanding without need to expand on anything now he is here.

The man is tired today, realising that he has to take things much more slowly than he thought possible.

So Ben is our gift today, but not the only one, we have feasted on a yummy lasagne cooked by the husband of one of my WI buddies. I do love my WI buddies, and the WI generally, an amazing bunch of women who spend more time campaigning for women’s rights and drinking prosecco than they do making jam. I am glad to be one of them. Good sleeping sounds upstairs so I’m off to bed, in a slightly panicy mode as I have finished my book (‘If God was a Rabbit’, highly recommended), will root out another, night all xx

He is home!

Stitched together with staples and meds, but home. What a relief. Today, on the order of teengirl, we have done sleeping, movie watching and roast chicken eating. Jase has done some shuffling about, and insisted on making the gravy, fine. Smallboy has done nursing, the drugs round (including injections, blimey) and general gwas for his dad. Elvis is feeling less confused.

They are all in bed now, and I have just spent a fantastic couple of hours on the phone to my lovely Snail. I hope that I listened as well as she did and could also offer her positivity, cheesy quote time, one I saw today, ‘your real friends might not always be by your side, but they have always got your back’, I love her for that x

So nothing else really, just relief, not thinking about anything more, just loving hearing their sleeping sounds. When we had the van, this was always my favourite part of the day, everyone in a tiny space, all that you need in a tiny space, sleeping, and together x

Chin up Mrs

Blimey. This is a boring medical update just for the record. So, with another big bleed underway, but with surgery planned for the same day, Mr R and I were up from the early hours (3f***ing30) of Wednesday  and headed into the hospital. It was a teary us who parted when they took him off to theatre at half eight, and I spent the day pacing, like an expectant 1930’s husband. I  managed to crochet a prosthetic knocker, but that, as they say, is another story. Half an hour before he was due back on the ward, they told me ‘no beds’, ‘two hours till beds’ , so I took myself off for what I then found was some very much needed fresh air. *Note to self, come the revolution, my votes will be for free easy hospital parking and some where pleasant to sit outside* – surely I cant be alone in this wish??? WHY do I have to sit on a curb in a car park??? Jase says its because somewhere to sit attracts melingerers, harrumph.

So luckily I was there when he was brought back up to the ward. So lucky, otherwise he wouldn’t have had any one to give him a drink, wash his poorly face, make him comfortable, find his morphine button for him, check his dressings, talk to the surgeon, put balm on his lips, be a nurse to him. Everyone on the ward is amazing, but they are just so stretched, it’s a bit scary. Mr R was in a lot of pain, so they brought more pain relief. I was there all afternoon, so that was good. Stef and Pops brought Smallboy and Teengirl, Mr R was most interested in his morphine pump, but he knew they were there, checking in.

So unluckily for Mr R, an unfortunate cough at about 7.45 pm caused a nasty bleed from his wound. Unfettered by platelets (constrained by anticoagulants) this proved to be rather tricky over the following 18 hours. Its all now under control, but like an unruly inmate, put pay to his hopes for an early release (Friday 20  Feb, some hope).

Further pain and bleeding  has led him to high morphine use (magic green button) and drip fed paracetamol, it’s not going well. Lots of dizziness and puking.

So here is the thing, we are where we are, us here at home, Jase there. Stef and Pops have gone, Shaun is here. Tomorrow seems a long way off, so the only thing to do is dig deep past the part of me that wants to cry and not stop, and so chin up Mrs, there is so more to do before that is on the cards, night all x

Today is a gift

Without getting too ‘ya know’ about it, today is a gift. Every day is a gift. All of us only have a finite number of breaths that we will share with each of the people we love.

Today Jase’s Dad arrived to see us, and it has been lovely to have him here. After tea and birthday cake this morning (he was 70 last week), Jase and smallboy took him off fishing with best friend of smallboy. They arrived home much later, cold, happy and with 20 small fishes caught and released (plus one mega carp). Teengirl was at work today, earning money towards her current goal – a small furry pet I think, or maybe a motorbike, it changes. Me? well no one asked how my day was actually, haha I sound SO needy! But just in case you were wondering, I cursed and swore my way around housework which no one would do but me, and no one will notice until I don’t do it. Ha ha, such is life!

So, my gift today? So many actually, small boys (young and old) fresh faced and smelling of the outdoors tumbling over their stories of gigantean fish touched but not landed, teengirl keen for a hug and wanting to share ridiculous laughs, my life’s love enveloping me with his arms and a tender kiss, a house ready to be muddied and muddled, a fridge full of good things ready to make a meal for the people I love, and a small battle won in the doctors surgery to get Mr R the medication he needed today and not tomorrow. I was invincible and triumphant.

There is so little we really need, this house would do us, night all xxx

Funny where things can go

OK so well we all know this, in families sometimes things can go somewhere you don’t expect. Tonight I didn’t expect that smallboy (tired, just home from gymnastics) trying to load a ‘pay as you go’ credit would result in everyone (I mean all four of us) in tears. Major drama, shouting, crying, stomping. OMG I called my suffering, sore, scared, cancer patient husband a lot of horrible names, the most printable of which was a ‘grumpy f**k’, whoops! Heyho, I guess its all part of keeping things normal (I hope). Just so you know, we have a 10 minute fester rule in our house, so it was all soon sorted, including the phone code. Teengirl (having recovered from being kicked in the face) even allowed him to use her best loved product in a much needed bath. So they are all sleeping now, and maybe the evening’s drama might even have a bright side or two. Teengirl had her first shared damn good cry about how shite everything is (and managed to tuck in a D grade chemistry test result, she’s good), I didn’t join in with the weeping at that point, and even  managed to be slightly adult in my support, consolation and chemistry based feedback. Oh, the other bright side has been a flash of creativity. Funny where things take you, like me writing this but not being able to work on any of my crochet. So, anyway I mentioned to teengirl that I wanted a tattoo with our names on, she said it was too pikey, but that something to represent each of us would be fine. So, my design is almost done, just need to find the right artist. I will post a photo when its done. So where will things go? Me and Jase had a good chat about the next few days, his fears about surgery, I think he would cope better if they were giving him a local, all that loss of control is really hard to come to terms with. His fears are this week, mine are next. Its funny where things end up, I’m hopeful that for no matter what, we are better and stronger and even sometimes kinder to each other because of it xxx

Someone has stolen my brain

Someone stole my brain in the night last night. I feel like it is totally absent. So I have taken to writing myself detailed daily schedules, with timings for everything, as I’m sure otherwise everyday will be like today, including periods of standing and not having a clue what I’m supposed to be doing next.

Last Friday night Jase had another bleed and had to be readmitted. I ended up calling an ambulance as I had had some wine (ARGH!!! – I hate that guilt fairy). It was so horrible seeing him in so much pain and discomfort. Luckily the children were sleeping and we had some of his family staying, so Stef could go with him.

He was home by Monday night and had a good nights sleep. Tuesday was pre-op. It was all fine, but totally floored him, in an ‘oh my goodness, there is nothing to do to change what is happening’ kind of a way. I can remember feeling like that when I went into labour with Teengirl – the ‘this is going to happen whether I like it or not’ feeling.

So now things are a bit calmer, I took the squibs to the local cancer care day centre, so they could discover what support there is there for them. Went OK I think, apart from me weeping continuously, choking on my brew and having to leave the room to puke. Teengirl is dining out on this, told everyone in the pub where Jase was having his tea with a friend who had popped up from Oxfordshire to see him today. She was in fits of hysteria. I love her so much 🙂

Jase and the small boy have gone to bed now, I just need to grow a new brain by the morning, big day at work tomorrow, night all xx

Creativity gap

In the normal run of things, I end most of my days with an hour or so of crochet. At the moment I have a blanket and a cardi underway. However, over the last two weeks I have not been able to do a thing. I think its because I’m finding it really hard to sit down. I can do purposeful activity, frantic rushing around, and sleep. Sitting down is much harder, so I was really pleased earlier in the week when I managed to finish a little bower bird for my sister in law’s birthday. It’s from a pattern by lovely Lucy at Attic 24. Hmm not very impressive, but maybe its a step in the right direction.

Last night I went out to see my group of friends in the village, there was lots of presecco. Well, there was at the beginning of the evening, none left by the end I think 🙂 I was really nervous about going, but it was really nice, and I’m glad I did, maybe another step in the right direction. I guess this really is just our ‘new normal’.

Consultant appointment

Just a quick medical update from yesterday. So, we saw Jase’s surgeon and got a date for the operation, 18th Feb. He gave us a lot of information, which I hope I get correct here. There is more than one type of kidney tumour. They talked to us about two types – one affects the kidney tissue itself (renal tumour), the other affects the lining of the kidney (this might have been called transitional, but don’t quote me). Last week, they thought that Jason had the later, which is why they were also talking about taking out his urethra on the left site, as the lining is contiguous with the kidney lining. Now they think it is more like to be the renal type, so the operation is more straightforward, shorter, and with a 9/10 change of being done as key hole surgery – harrah!!! and a smaller chance of spreading elsewhere – double harrah!!! If a slot on a list comes up the week before, they will put him onto that – triple harrah!!!

Once the kidney is out, it goes off to be inspected, and then the following week, we get to find out what the next steps are. Right now we have enough steps to be going on with.

They have also found that there are two enlarged lymph nodes close to the kidney, and in an ideal world, they would remove these at the same time, but this might not be possible and so might lead to additional post surgery treatment or further surgery.

So there we go, what amazed me was how exhausted we both were by the time we got home. Another 9pm lights out at Robinson Towers – this is just not normal!!! Take care all, and thank you for all your lovely messages xxx