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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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

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

Bugger all that positivity

I feel shite. OK I have been educated to know absolutely that bad language is often a mask for a poor vocabulary, but needs must. The last few days have been just awful, but for no particular reason. We still a date for Jason’s op, we have date for his pre-op, but we are really struggling. I am really struggling. Small boy is really struggling. Even Jase and teengirl are struggling (although she has been a star, more of which later).

So nothing has changed, maybe this is the problem. We are only a couple of weeks in and I’m struggling. How did my brother do this for FIVE years? (Three Hodgekin’s lymphomas, five years, final call of terminal cancer beaten and now all fine, been clear for 18 years now).

OK enough with the mud gazing (a favourite saying of a good friend of mine, ‘at times life puts us all in the mud, but its up to you if you choose to look down in the mud or up at the stars’). I think it might be all down to chemistry. We have  been running the adrenelin high, and now it has run out on us. We are  weary.

So maybe a bit more mud-gazing. Smallboy is really struggling at school. In their heart felt efforts to keep everything as normal as possible, no one had asked him how he was. Lots of tears and some visits later, we are back on the right page, but not before I enlisted teengirl to come  talk to him.  She was amazing. Laughed and cried together and made a plan. She totally nailed it for him.

Had  a good long chat with a good friend I should talk to more often, babe, its not easy xxx

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

This time last week

Life is so weird. Its really odd to think that this time last week we had no idea what was coming towards us. I was scrolling through my text messages earlier, and realised that there a bunch of texts from Jase ‘from before’, him talking about having had his scan, what time we were visiting, when the doctor was due to do a bladder wash, just ordinary stuff. It gave me such a jolt, realising that these messages were all from before we knew. I can’t quite delete them yet.

Tomorrow we are going to meet the consultant surgeon, 3pm. We have organised the squibs to be with friends after school, they are keen just to be bimbling with the friends they would usually see in any case. Jase has just gone for a snooze having had his 8pm meds. Remind me to ask him to talk to the docs about changing his dose at bed time so it lasts till the morning.

My lovely friend Melissa has given me a really helpful food list, I hope to put a bit more of it into action everyday. Hilariously, is recommends breast milk as being better than cows milk, I think that might come under Jase’s “no f***ing super-foods” list!!!

How did this happen?

How did this happen? I’m writing this post mainly just as a record of what did happen to get us to Wednesday 21st January 2015. Jase went into primary care on Sunday morning, not being able to wee. He was admitted to an assessment ward that afternoon (no spaces on the urology ward) and catheterised. By the time we were able to visit, he was in an increasing amount of pain, by 7pm he was on 2-hourly liquid morphine. This continued through the night, I have never seen anyone in so much pain before. Monday he was still on the assessment ward, having ongoing ‘tube related’ procedures all to do with the amount of bleeding and clots forming in his bladder. Tuesday brought a move to urology and the long awaited cat scan. His pain seemed more under control. There is a lot of waiting. Wednesday, this part is really hard to write, Jase called me at about 1pm, telling me the news that he had cancer and he needed to have his kidney removed. I then drove to the hospital, went and found him in a treatment room with the registrar and Jenny the (his) specialist cancer nurse. The rest, as they say, is history. We were told that there would be a meeting of the specialist surgeons on Friday 23rd January, and that there would be a treatment planning meeting the following week. That’s all we know.