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 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
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
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’.
There have been some uplifting moments in our rollercoaster of a week this week. These flowers were a gift from a friend of Jason’s, she was an everyday regular in his café before he sold it. I also received a fabulous parcel from my very good friend ‘The Snail of Happiness’, six balls of yarn and a magazine I had won in a raffle in April 2014 when I was visiting her. I’m glad that she had not sent it before :), although it did take me a while to recall it at all! I was hoping to post a picture of the parcel here, but being an amateur blogger, haven’t quite managed it!
Gifts and good vibes do us all good. When he was in the hospital last week (on Monday I think) Jase gave his shirt to a guy so he could be discharged, small things can be big. And after my epic sleep last night, I’m going to give myself the lift and gift of a glass of wine this evening, or maybe even two 🙂
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
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!!!
Jase is in bed at the moment, his pain medication makes him really drowsy after he takes it, so he is trying to fit some adjustments into how he organises his days. He is also pooped as we have had a bit of a weekend, visits from two of his best buddies, good times 🙂 And a walk and lunch out today, the house seems quiet now they have gone home. One, an orthopaedic surgeon, arrived on Friday evening from Cardiff with four different bottles of whisky – that didn’t seem right at all! The other, a very straight talking bloke, said that yes, he would like to follow this blog, but not if it got too heavy. Charming. You know who you are!!
Had a lovely morning, we both woke early and enjoyed a brew in bed before the squibs came to join us. A hang over free Saturday morning, don’t think I’ve had one of those since I was pregnant!!!
Talking of the squibs, how do you tell your children their Dad has cancer? How do you make sure they understand what’s going on? How can you be sure they are OK? What about when they are at school? What are they thinking? What are they telling their friends? Do they think he is going to die? As Jase was in hospital, it was down to me to tell them the news on Wednesday after school. It went OK, but only I think because it didn’t really sink in. In the days following, small boy has reacted with bouts of non-compliance, not sure about my beautiful teengirl. I think that she is OK. She has asked questions, taken on board information, spent a lot of time with her friends, and asked if Granny can come and stay. My plan with them both is to be ever vigilant, whilst trying to maintain normality in their lives, – wish me luck!!!
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.