This morning He was told that they were confident that he was ALL CLEAR. They'd been pretty certain after the surgery that there was nothing sinister lurking but until the kidney had been sent away for testing they couldn't say. The kidney was the size of a small rugby ball. But the tumour was fully contained and hadn't reached or grown to/at the edges or on the surface. Out of all the RCC you can have and there are four I think, his is CC which stands for Clear Cell. The least aggressive and invasive of them all.
Unfortunately I couldn't take it all in as I woke up feeling really really sick and I was trying my best not to throw up on the Doctor's desk! But he was happy with how the scar was healing. He was certain that it was still very early days after such huge surgery to be having sites of pain near his drainage tube.
He can return to work AT THE VERY EARLIEST mid January and I think he was being very hesitant then due to the nature of his work. He can drive as soon as he feels able to perform an emergency stop without hesitation. He will have to have scans and blood tests for a few years yet. The first being in April 2017. But Mr Cutting was really pleased with the patient.
I was really pleased with Mr Cutting. I'm sure there's more I need to say but I will add details once we get the letter from today's consultation.
Till the next time....
Friday, 11 November 2016
Thursday, 10 November 2016
Appointment day
We go this morning to find out what's what. Neither of us want to go. I've found the Kidney Cancer UK forums really helpful. I think that even if we are told they got it all etc that I'll
not believe them.
Progress wise. After a week of antibiotics things seem to have settled although last night he said he felt a bit fluey again. So we are keeping a close eye on that. The open bit of wound is still under a dressing but not leaking so that's good. He's on no painkillers now in the day and only takes one at night if the sore bit near the drain site is still sore. Moving around n getting in n out of chairs is better than it was. He can now sleep on his side too. Hooray! He's fed up and bored of just being at home all day. I think he thought he'd be better a lot faster than this is taking. This is entirely normal and common in a lot of nephrectomy patients. Most report 4-8 months until they reach pre op standard but even then have twinges and bad days. Obviously some are faster and slower but that's an average I've see the most.
Thank you again for all your continued supportive messages. You are brilliant.
Till the next time....
not believe them.
Progress wise. After a week of antibiotics things seem to have settled although last night he said he felt a bit fluey again. So we are keeping a close eye on that. The open bit of wound is still under a dressing but not leaking so that's good. He's on no painkillers now in the day and only takes one at night if the sore bit near the drain site is still sore. Moving around n getting in n out of chairs is better than it was. He can now sleep on his side too. Hooray! He's fed up and bored of just being at home all day. I think he thought he'd be better a lot faster than this is taking. This is entirely normal and common in a lot of nephrectomy patients. Most report 4-8 months until they reach pre op standard but even then have twinges and bad days. Obviously some are faster and slower but that's an average I've see the most.
Thank you again for all your continued supportive messages. You are brilliant.
Till the next time....
Wednesday, 2 November 2016
Antibiotics
Over the last few days, progress has been minimal, as I said last post. The district nurse came today and after she'd finished telling me off for not ringing them when I'd been concerned, she said the wound was re opening along previously healed bits. The culprit was probably that iffy bit where the kin is kinda pleated, like a teeny flap overlapping. His side is swollen and tender and she rang to ask for the doctor to come and visit. She got the lovely student nurse to push some 'aquafibre' into the open but and cover with another of the comedy sized plasters.
He came over a bit queer then, full on sweating. He had to sit down. Jo, the nurse was lovely. She told him off for being brace. She could tell he's not had the news he wanted. And that he was gutted.
The doctor came an hour later.
Efficient but rude I thought.
She enquired as to the problem. She took his temperature. Raised. No shit Sherlock !
She ripped back the plaster - no warning!
Said 'ahhh yes, there's pus weeping' let's get some antibiotics for that.
You see, she went on, it's slow to heal because of the, and I'm not saying this to be rude, thick layer of fat that's not got a good blood supply.
Don't mince your words madam!!!
His side was SWOLLEN and he's not got that much fat there. Cheeky cow.
Anyway she prescribed flucoxicillan and some codeine to try as the tramadol is making him itch.
He was devastated as he'd built up this day to getting in the shower. Instead, he got sorted and we took a slow stroll in the Autumn sunshine to the chemist for his pills. Which by the way, is a right ball ache. To be taken on an empty stomach. An hour before food or two after. That's ok. But he's been non stop bloody eating machine!
So a set back. We"ll have to just keep on keeping on. Can't wait for this to be over.
He came over a bit queer then, full on sweating. He had to sit down. Jo, the nurse was lovely. She told him off for being brace. She could tell he's not had the news he wanted. And that he was gutted.
The doctor came an hour later.
Efficient but rude I thought.
She enquired as to the problem. She took his temperature. Raised. No shit Sherlock !
She ripped back the plaster - no warning!
Said 'ahhh yes, there's pus weeping' let's get some antibiotics for that.
You see, she went on, it's slow to heal because of the, and I'm not saying this to be rude, thick layer of fat that's not got a good blood supply.
Don't mince your words madam!!!
His side was SWOLLEN and he's not got that much fat there. Cheeky cow.
Anyway she prescribed flucoxicillan and some codeine to try as the tramadol is making him itch.
He was devastated as he'd built up this day to getting in the shower. Instead, he got sorted and we took a slow stroll in the Autumn sunshine to the chemist for his pills. Which by the way, is a right ball ache. To be taken on an empty stomach. An hour before food or two after. That's ok. But he's been non stop bloody eating machine!
So a set back. We"ll have to just keep on keeping on. Can't wait for this to be over.
Sunday, 30 October 2016
Day 18 post op
Well, you'd think there'd be massive improvements to report by now. But truly it's like he's reached stalemate. Yesterday I was on the cusp of ringing the district nurse again as he's still really uncomfortable round the drain site and he was complaining of pain in his side. He decided though that it was ok and he could manage.
The mood of the Day 17 was 'Fed up and Cheesed Off' for us both really. He is really really hating feeling so incapacitated and I'm hating it too, on his behalf. He's frustrated that he can't just 'do' things so simple as
Have a shower. Or lift things up. Or lie down on the floor and have a good stretch.
Although it's great he's got his appetite back, I'm fed up of cooking and thinking about what to
Make. Don't get me wrong, this pissed me off from time to time before all of this.
But I really don't mind at all. I just wish this bit of the recovery would hurry the fudge up.
It seems like he's making zero progress, or even going backwards . Although he's cut his tramadol out in the day time, just sticking to paracetamol so that is progress.
And he is finding it really tricky to answer the 'are you any better yet' questions well meaning folks ask continually. It does seem hard to have to say 'not really', you almost feel obliged to put a positive spin on it. People who are texting and ringing obviously care and it'd be awful to offend them. Imagining the isolation of not having any support would be bleak. It kinda of adds a pressure though - and we too are guilty of this act. We've been those well wishers. It's just human nature I guess!
Till the next time
The mood of the Day 17 was 'Fed up and Cheesed Off' for us both really. He is really really hating feeling so incapacitated and I'm hating it too, on his behalf. He's frustrated that he can't just 'do' things so simple as
Have a shower. Or lift things up. Or lie down on the floor and have a good stretch.
Although it's great he's got his appetite back, I'm fed up of cooking and thinking about what to
Make. Don't get me wrong, this pissed me off from time to time before all of this.
But I really don't mind at all. I just wish this bit of the recovery would hurry the fudge up.
It seems like he's making zero progress, or even going backwards . Although he's cut his tramadol out in the day time, just sticking to paracetamol so that is progress.
And he is finding it really tricky to answer the 'are you any better yet' questions well meaning folks ask continually. It does seem hard to have to say 'not really', you almost feel obliged to put a positive spin on it. People who are texting and ringing obviously care and it'd be awful to offend them. Imagining the isolation of not having any support would be bleak. It kinda of adds a pressure though - and we too are guilty of this act. We've been those well wishers. It's just human nature I guess!
Till the next time
Thursday, 27 October 2016
Can't sleep
Here I am at silly O'clock, wide awake.
Day 14 after the operation. The district nurse came yesterday to check his wounds.
The main insision is healing nicely top and bottom. But on his waist there's a teeny overlap flap of skin and it's only just closed. She had a right prod and poke trying to open it up along there. She cleaned and dressed it advising him to take it easy and not move too much there. No sudden movements and no putting strain on it, else it could open.
The drain site is a bit 'iffy'. Now the drain site is actually only a week old so isn't as far along as the main 2 week old scar. She wasn't sure how far back it 'went' and I did wonder if she was going to stick her finger in it! Anyway, she dressed it with iodine soaked dressing which would dry it up and will be back in a week to check it. We've to watch for signs of infection and ring them back straight away.
Painwise - round the clock pain relief is keeping him docile. But he is being very brave about it. He's in most agony on moving - but the pain is from under the drain site - like something tore and isn't healing. He's having to use allsorts of different muscles to get in and out of chairs/bed as they are not hospital standard at home! The Nurse said to ring the GP if worse or no change. I wondered if he'd got a hernia - though I can't feel any bulges. She also said he could get odd sensations from his innards settling and filling the gap where the massive kidney had been.
Also she reminded him that he has had major surgery and it's a massive outrage to your body. He is only two weeks down the line and is doing brilliant considering.
Plus I've been thinking about him pre op ( makes me giggle - pre op! )
The cancer took his appetite and strength. For weeks he'd be coming in from work and just falling asleep knackered. Now at the time, pre diagnosis, we put it down to getting older - he's 47 and works hard manual days of upto 12 hours. Loss of appetite, could have been explained away by his getting in late and going 'past it' for much food and he does feel a little travel sick coming back down from the Western Lakes where he works a lot. I had worried though to friends about his weight loss. I'd noticed his shoulders and collar bones. He wasn't as muscly as he was and despite the weight loss -skinny legs even, he never lost his round belly. I mean, he was never fat. He was just big. But now it's obvious that the huge tumour was displacing everything making him look like he had a beer belly - he doesn't even drink!
So not only is his body recovering from the physical surgery. He's getting back his strength from feeding those cancer cells. I've been in the position of being very weak and having to take it slowly and there's nothing more frustrating than enforced laziness for want of a better word. He does feel frustrated at not being able to 'do' at will.
I don't know why I can't sleep. I thought once this op was out of the way I'd get a full night. I can't remember the last time I slept through. I'm like a frikken new born baby. Looking after him is tiring. I mean he was pampered and well looked after before! I was practically a 50s housewife but now I have the added worrying about his scars too. We used to argue who was the most tired - he said it was him physically tired after a day at work and I'd be saying it's me, mentally tired. Both debilitating.
His appetite is back and voracious so that's a good thing! The nurse said plenty of protein rich foods. So he's been getting three square meals a day. And whatever he asks for, I get it.
Applying for 'sick pay' is another headache. It's an absolute joke. He's self employed. But has paid all his dues like a good little taxpayer. We don't need the benefits for ever. But right now, he does. Yes we have life and terminal illness insurance. We couldn't afford to add the premium for the critical illness and having read the small print - his cancer wouldn't count anyway. So off to gov.uk I went after reading the booklet Macmillan gave us.
I actually rang up for something to do on the day of his operation and was told we could apply on the
phone but he'd need to be near me. Answer all the questions and job done.
Now in theory he should be able to apply for ESA but because of our postcode, we are now in Universal Credit territory. Which is fine, because that's what the law says.
I rang the helpline. After, and I kid ye not, 36 minutes on hold, I was told by a bored sounding Scottish bloke that I needed to claim UC instead online but he'd put me through for more advice.....
Continue to hold - to non stop Beethoven on a loop.
What seemed like hours later, I was told by what sounded like and 8 year old that I had to apply online.
So I looked.
What makes me amused is the fact we had to make wills before his operation as being unwed means we have no legal rights to anything. Technically single on all official forms - being engaged doesn't count!
However, for benefits we are suddenly treated as being married and he has to claim for me and I also have to apply at the the same time! Bonkers. It's a right old rigmarole too. And I found it most strange they didn't ask us for Nat Ins numbers.
I had to then tick a box to declare I was looking for work .....????
I sent an email to my 'work coach' whoever that maybe saying how ridiculous it was. And get this, if WE do qualify - which we won't - we'd get paid on 29th November!!!
Now I'm all for welfare reforms- I deal with a lot of your typical benefit scroungers daily. But this system is preposterous. He got his free prescription card two days after we sent the form in -excellent. But UC?? I bet we don't get anything. I say 'we'. I mean 'he'. It made me a bit raaaaaar and wished I hadn't bothered - which is what they want.
Blogger is playing up so please excuse all the typing errors.
Day 14 after the operation. The district nurse came yesterday to check his wounds.
The main insision is healing nicely top and bottom. But on his waist there's a teeny overlap flap of skin and it's only just closed. She had a right prod and poke trying to open it up along there. She cleaned and dressed it advising him to take it easy and not move too much there. No sudden movements and no putting strain on it, else it could open.
The drain site is a bit 'iffy'. Now the drain site is actually only a week old so isn't as far along as the main 2 week old scar. She wasn't sure how far back it 'went' and I did wonder if she was going to stick her finger in it! Anyway, she dressed it with iodine soaked dressing which would dry it up and will be back in a week to check it. We've to watch for signs of infection and ring them back straight away.
Painwise - round the clock pain relief is keeping him docile. But he is being very brave about it. He's in most agony on moving - but the pain is from under the drain site - like something tore and isn't healing. He's having to use allsorts of different muscles to get in and out of chairs/bed as they are not hospital standard at home! The Nurse said to ring the GP if worse or no change. I wondered if he'd got a hernia - though I can't feel any bulges. She also said he could get odd sensations from his innards settling and filling the gap where the massive kidney had been.
Also she reminded him that he has had major surgery and it's a massive outrage to your body. He is only two weeks down the line and is doing brilliant considering.
Plus I've been thinking about him pre op ( makes me giggle - pre op! )
The cancer took his appetite and strength. For weeks he'd be coming in from work and just falling asleep knackered. Now at the time, pre diagnosis, we put it down to getting older - he's 47 and works hard manual days of upto 12 hours. Loss of appetite, could have been explained away by his getting in late and going 'past it' for much food and he does feel a little travel sick coming back down from the Western Lakes where he works a lot. I had worried though to friends about his weight loss. I'd noticed his shoulders and collar bones. He wasn't as muscly as he was and despite the weight loss -skinny legs even, he never lost his round belly. I mean, he was never fat. He was just big. But now it's obvious that the huge tumour was displacing everything making him look like he had a beer belly - he doesn't even drink!
So not only is his body recovering from the physical surgery. He's getting back his strength from feeding those cancer cells. I've been in the position of being very weak and having to take it slowly and there's nothing more frustrating than enforced laziness for want of a better word. He does feel frustrated at not being able to 'do' at will.
I don't know why I can't sleep. I thought once this op was out of the way I'd get a full night. I can't remember the last time I slept through. I'm like a frikken new born baby. Looking after him is tiring. I mean he was pampered and well looked after before! I was practically a 50s housewife but now I have the added worrying about his scars too. We used to argue who was the most tired - he said it was him physically tired after a day at work and I'd be saying it's me, mentally tired. Both debilitating.
His appetite is back and voracious so that's a good thing! The nurse said plenty of protein rich foods. So he's been getting three square meals a day. And whatever he asks for, I get it.
Applying for 'sick pay' is another headache. It's an absolute joke. He's self employed. But has paid all his dues like a good little taxpayer. We don't need the benefits for ever. But right now, he does. Yes we have life and terminal illness insurance. We couldn't afford to add the premium for the critical illness and having read the small print - his cancer wouldn't count anyway. So off to gov.uk I went after reading the booklet Macmillan gave us.
I actually rang up for something to do on the day of his operation and was told we could apply on the
phone but he'd need to be near me. Answer all the questions and job done.
Now in theory he should be able to apply for ESA but because of our postcode, we are now in Universal Credit territory. Which is fine, because that's what the law says.
I rang the helpline. After, and I kid ye not, 36 minutes on hold, I was told by a bored sounding Scottish bloke that I needed to claim UC instead online but he'd put me through for more advice.....
Continue to hold - to non stop Beethoven on a loop.
What seemed like hours later, I was told by what sounded like and 8 year old that I had to apply online.
So I looked.
What makes me amused is the fact we had to make wills before his operation as being unwed means we have no legal rights to anything. Technically single on all official forms - being engaged doesn't count!
However, for benefits we are suddenly treated as being married and he has to claim for me and I also have to apply at the the same time! Bonkers. It's a right old rigmarole too. And I found it most strange they didn't ask us for Nat Ins numbers.
I had to then tick a box to declare I was looking for work .....????
I sent an email to my 'work coach' whoever that maybe saying how ridiculous it was. And get this, if WE do qualify - which we won't - we'd get paid on 29th November!!!
Now I'm all for welfare reforms- I deal with a lot of your typical benefit scroungers daily. But this system is preposterous. He got his free prescription card two days after we sent the form in -excellent. But UC?? I bet we don't get anything. I say 'we'. I mean 'he'. It made me a bit raaaaaar and wished I hadn't bothered - which is what they want.
Blogger is playing up so please excuse all the typing errors.
Till the next time....
Sunday, 23 October 2016
Numbers
41 = the number of cm the wound is from end to end
52= the number of staples removed from said wound today
2 = the number of district nurses arriving at my house today to remove said staples
54367 = the number of calories I burnt cleaning the bedroom and bathroom and stairs and lounge and kitchen and front garden because of the district nurse visit
0 = the amount of district nurses going in my bedroom or bathroom
10 = days after the operation
4 = the times of day I dole out painkillers
16 = approximate times I'm in the kitchen preparing meals and drinks for the recoveree
2 = naps taken by him in the day
1 = hole in lower tummy from drainage tube
4 = cm ish where the wound is open and bled a little after the staples were removed. It's right on his waist and we've to keep an eye on it
50 - pence piece - if the open bit oozes more than the size of a 50p piece we've to ring for help
2 = weeks on sick note by doc at the hospital. Bloody ridiculous because it means I've to faff about ringing the GP surgery to get another one.
As for the general what's it like to have him home?
Well, he struggles to get comfy in bed and in the chair. His appetite has returned. You can tell when it's time for then next painkillers and he's tired. He can't concentrate for long on stuff. But looking back to a week ago..massively improved. Day by day he's getting there.
Till the next time....
52= the number of staples removed from said wound today
2 = the number of district nurses arriving at my house today to remove said staples
54367 = the number of calories I burnt cleaning the bedroom and bathroom and stairs and lounge and kitchen and front garden because of the district nurse visit
0 = the amount of district nurses going in my bedroom or bathroom
10 = days after the operation
4 = the times of day I dole out painkillers
16 = approximate times I'm in the kitchen preparing meals and drinks for the recoveree
2 = naps taken by him in the day
1 = hole in lower tummy from drainage tube
4 = cm ish where the wound is open and bled a little after the staples were removed. It's right on his waist and we've to keep an eye on it
50 - pence piece - if the open bit oozes more than the size of a 50p piece we've to ring for help
2 = weeks on sick note by doc at the hospital. Bloody ridiculous because it means I've to faff about ringing the GP surgery to get another one.
As for the general what's it like to have him home?
Well, he struggles to get comfy in bed and in the chair. His appetite has returned. You can tell when it's time for then next painkillers and he's tired. He can't concentrate for long on stuff. But looking back to a week ago..massively improved. Day by day he's getting there.
Till the next time....
Friday, 21 October 2016
Discharged.....or not
Yesterday was Thursday 20th October. Or Day 7
The consultant came round at around 10am and uttered the magic words
"You can go home."
At 4pm, the nurse on the uro oncology team came and said...
"No, you can't."
Calcium level in blood is too low. So they were keeping him in to repeat the blood test in the morning.
Right now, it's 08.45 on Friday 21st Oct. his bloods have been taken.
So it was yet another roller coaster emotion ride day. I was at home waiting, getting the house close to District Nurse Visiting Standard, because she/he will come to the house to remove the staples. Not sure if they will do it in two halves. Because there are A LOT of staples. I bet his wound is close to 50cm. I might measure it when he comes home.
He was on the ward waiting, no one visited in the afternoon because we all thought he'd be home.
I have questions I'd have asked.
Why did they not take his bloods at 4pm last night? ( answer prolly to get truer record due to time ) Then, treatment given if needed?
Why is the calcium so low now? How can we make sure it's not getting low at home? Was it fine the day after the op and is now starting to fall or is it getting higher just not fast enough?? Was it the litre of blood lost in op then because of the extra bloods and fluids list from the drain, coupled with his non eating due to trapped wind?
In a way it's good that they've identified this and didn't send him home to go through the rigmarole of going out today to sit n wait.
If everyone can please cross their fingers and send high calcium thoughts ...
Till the next time.
The consultant came round at around 10am and uttered the magic words
"You can go home."
At 4pm, the nurse on the uro oncology team came and said...
"No, you can't."
Calcium level in blood is too low. So they were keeping him in to repeat the blood test in the morning.
Right now, it's 08.45 on Friday 21st Oct. his bloods have been taken.
So it was yet another roller coaster emotion ride day. I was at home waiting, getting the house close to District Nurse Visiting Standard, because she/he will come to the house to remove the staples. Not sure if they will do it in two halves. Because there are A LOT of staples. I bet his wound is close to 50cm. I might measure it when he comes home.
He was on the ward waiting, no one visited in the afternoon because we all thought he'd be home.
I have questions I'd have asked.
Why did they not take his bloods at 4pm last night? ( answer prolly to get truer record due to time ) Then, treatment given if needed?
Why is the calcium so low now? How can we make sure it's not getting low at home? Was it fine the day after the op and is now starting to fall or is it getting higher just not fast enough?? Was it the litre of blood lost in op then because of the extra bloods and fluids list from the drain, coupled with his non eating due to trapped wind?
In a way it's good that they've identified this and didn't send him home to go through the rigmarole of going out today to sit n wait.
If everyone can please cross their fingers and send high calcium thoughts ...
Till the next time.
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