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
Sunday 30 October 2016
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.
Wednesday 19 October 2016
Wednesday 19th October
Day 6 post op
He has been well looked after by the brilliant Nurses.
Bit of a catch up - again for me. I'm a bit zombified lately and my days are constructed around visiting times. I go twice a day and I want to go twice a day. One night I'd made mention of maybe not going but when it came to it, I couldn't not go.
Thur 13th Day 1 - operation
Frid 14th Day 2 - ICU
Satu 15th Day 3 - ward all tubes still in and then out
Sun 16th Day 4 - morphine button out - He was really quite poorly. In a lot of pain with wind, struggled to get comfy, drain at 95mls
He was in agony like I blogged about - the trapped wind and his stomach was visibly swollen and he said it stretched his scar. He was also sick through the night.
This is direct from my googling. I explained a little bit on my last post about this.
https://healdove.com/health-care-industry/Getting-Gas-Pain-Relief-after-Surgery
"There are two common types of gas pain that may occur after surgery: intestinal and intraperitoneal. They are quite different, but can both be bothersome. Intestinal gas pains are caused by a buildup of gas inside of the intestines. Intraperitoneal gas pains are caused by gas trapped outside of the intestines, but inside the abdominal cavity."
He has been well looked after by the brilliant Nurses.
Bit of a catch up - again for me. I'm a bit zombified lately and my days are constructed around visiting times. I go twice a day and I want to go twice a day. One night I'd made mention of maybe not going but when it came to it, I couldn't not go.
Thur 13th Day 1 - operation
Frid 14th Day 2 - ICU
Satu 15th Day 3 - ward all tubes still in and then out
Sun 16th Day 4 - morphine button out - He was really quite poorly. In a lot of pain with wind, struggled to get comfy, drain at 95mls
He was in agony like I blogged about - the trapped wind and his stomach was visibly swollen and he said it stretched his scar. He was also sick through the night.
Mon 17th Day 5 - a little easier but not drinking or eating enough. Even with little sips of water the stomach bloating came back. But he looked a lot better than he had on day 4. Drain is still in. 75mls
Moving around is easier because of no tube in arm. Cannula is still in - they gave him anti sickness drugs through it.
One surgeon said the drain can come out when it's under 50mls - but my question is - what happens to the gunk left, that would have drained out, if there's no drain??? The other surgeon said he likes the drain to stay in until it's dry or thereabouts. Let's give this surgeon a cheer please.
Anyway he says that most of his pain is not from the scar itself but from the wind.
Anyway he says that most of his pain is not from the scar itself but from the wind.
This is direct from my googling. I explained a little bit on my last post about this.
https://healdove.com/health-care-industry/Getting-Gas-Pain-Relief-after-Surgery
"There are two common types of gas pain that may occur after surgery: intestinal and intraperitoneal. They are quite different, but can both be bothersome. Intestinal gas pains are caused by a buildup of gas inside of the intestines. Intraperitoneal gas pains are caused by gas trapped outside of the intestines, but inside the abdominal cavity."
They give the same helpful hints he's had from the doctors, nurses and physios.
"This type of pain can occur after any type of surgery, but is most common after abdominal and pelvic surgery. Open surgery with longer incisions and laparoscopic surgery in the abdominal cavity can leave the bowels (intestines) "stunned." Anesthesia (general, as well as epidural and spinal) can slow down the bowels, preventing the passage of gas and stool.
Pain medications (narcotic) add to and contribute this effect. As a result, I frequently hear patients reporting constipation and gas buildup after surgery."
I think it's quite safe to say his innards are indeed 'stunned'. ( I know - I've watched a radical nephrectomy on you tube - BRUTAL )
The remedies involve moving about, which when you've been cut in half, is a bit trixy. But true to form, the 'give it time' approach is working.
Yesterday he'd been up out of bed thrice, twice was a shuffle to the loo flying solo and once was a longer stroll to the end of the ward with the physio. Afternoon visiting saw him looking more relaxed. I took him some goodies to try to help with the 'horrible mouth'. I took mouthwash, wine gums, and fresh pineapple. I also took him some costafortune stem ginger biscuits to help with the nausea - he'd been sick in the night.
After a long email and conversation with our Macmillan nurse Richard on Day 3, it's soothing to know all of the above is completely normal and he is absolutely typical of a post 'whipping a kidney out' patient.
Also I'm really grateful to the support of people on the forum on KCUK. It's so much better when you realise all this is normal. It's just because it's never happened to you before.
So here we are on Day 6
I've had a text from him to say he managed to sleep a little bit and he's had Readybrek for breakfast! I'll be seeing him after lunch.
More news next time X
Oh and if you can
Please please please please sign this petition and then share it around so others can. I am not sure yet if he will need any further treatment. But please sign it in case he does.
https://petition.parliament.uk/petitions/159244
Thank you.
Sunday 16 October 2016
On the ward.
He's been on the general ward for two days now. Although I have lost track of days and times etc. It's whizzing by in a blur interspersed with hospital visiting.
Let me track back just for myself.
Thursday 13th October - arrive on ward 7.15, down to theatre 8.30, on ICU 3.30pm
Friday 14th October - am - off monitors and up out on bed, pm - transferred to ward
Saturday 15th October - catheter and epidural out, Surgeon came to see him
Sunday 16th October - what I am writing about now.
Once the epidural wore off, I could see him become more tense and anxious. He still has the PCA - Patient Controlled Analgesia - or morphine button I call it. He's in agony with trapped wind.
A little bit of info I learned about trapped wind today. Trapped wind is where the air got into the spaces around the outside of the bowel. Eventually it gets reabsorbed into the bowel and intestines where it will make its way out either top or bottom. Walking about helps this process. There's the issue. Walking about when you've a giant row of stitches holding you together is trixy.
One, you need nurses to help you at first.
Two, you need to tell your brain that your stitches will hold and they will rupture, spilling your innards all over the ward floor and
Three it hurts so you are hesitant about getting started.
Four - eating hurts but will get the bowel moving along but you e no appetite and your mouth tastes funny so you don't feel like eating.
Five moving about with the drain still in and a cannula in also is limiting.
Hopefully the tramadol last night will have knocked him out so he could get his first full night of sleep. He's on a ward full of elderly patients, some of whom are loud and difficult. NHS cutbacks closed down the hospital they need years ago. The poor nurses are stretched beyond belief. So far all the staff have been great except for three of them.
One - a cleaner, hideously notorious for being the street gossip, knows him and stood for hours grilling him.
Two - an over enthusiastic male student nurse who swang his legs up on the bed too fast causing him great pain
Three - a useless unprofessional young student female nurse ( not sure of the grade - prolly olden days would call them auxiliary nurses? ) who borrowed his pee bottle for the bloke next door. Forgot then to replace it. Then when asked 'urgently' by him to please get another bottle, it was flung at him with a 'there' and a glance that suggested he should have got it himself. She neglected to close the curtains too so he then had to ask the extremely stretched but lovely ward nurse who rolled her eyes about the young student nurse when he told her. She'd also been discussing pay and conditions loudly and complains about everything. I think she needs to piss off and get a different career.
So today is Monday. I've already emailed Richard, one of our cancer key worker Macmillan nurses in full on panic mode about him coming home. When his Mum came out after open heart surgery, you get a really detailed week by week recovery guide and what you could/should be doing. I think there should be the same for patients after a radical nephrectomy. I suppose the panic of him coming home is the fact it's totally unchartered waters for us both and in hospital there's the security blanket of nurses at your fingertips. But I do think they ship em out a little too fast these days. He's still wearing theatre gowns. I'd like a full 24 hours of him in PJs being independently in and out of bed and to the loo etc on the ward before he gets home.
Till the next time...
Friday 14 October 2016
Out damned kidney.
Well, yesterday now seems like it whizzed by.
I came straight home after we left him. And then texted and rang everyone to let them know. Did three loads of washing. Played with Freddie. Clock watched a fair bit.
I rang at three. They said he was in recovery and that all seemed well. Ring back in an hour or so.
At 4.16pm I rang back. He was fine. He was on the ward. He'd had some water. The operation had gone as planned with no complications.
We could visit.
On ICU he looked sleepy but totally fine. He looked a lot better in fact, than he had when he was waiting to go down in the morning! He was attached to monitors. He had a large drain in the wound. He had a catheter. He had an epidural machine. A normal saline drip and a morphine button.
His lips and mouth were dry. He sounded weak and eyes kept closing. But they then sat him up and he was drinking water and talking. He complained of pain in his shoulder. I told him this was normal and is actually transferred pain.
The nurse looking after him let me see the surgery notes. Findings were an upper pole large RCC with adrenal adherent amongst other things like veins and arteries. I tried to remember but haven't. The removed the whole kidney and the adrenal gland and the procedure actually only took 2hours and 45 minutes! He lost a litre of blood. No other complications. He's got disolvable sutures inside and staples on the outside.
She said to ask if I didn't understand anything. I actually understood more than I thought I would!
Then one of his anaesthetists came to chat to him about the importance of moving and using his pain
relief for relieving the pain. Don't be brave and don't be still!
The other doctor came, the one who'd led him away in the morning. She said he looked good and that he'd done really well. I asked her about the kidney and she said it was massive. Which is why his scar was so huge. I asked her about the broken table. She said
They'd positioned him on his right side, then they 'break' the table by making a large /\ shape so his left side is stretched right out.
Looks comfy doesn't it?! So actually some pain will probably come from being in that position for so long! They said it was Hobson's Approach, something beginning with S and a word like Thunderbolt was used too. I didn't ask about these. I may do today.
I came straight home after we left him. And then texted and rang everyone to let them know. Did three loads of washing. Played with Freddie. Clock watched a fair bit.
I rang at three. They said he was in recovery and that all seemed well. Ring back in an hour or so.
At 4.16pm I rang back. He was fine. He was on the ward. He'd had some water. The operation had gone as planned with no complications.
We could visit.
On ICU he looked sleepy but totally fine. He looked a lot better in fact, than he had when he was waiting to go down in the morning! He was attached to monitors. He had a large drain in the wound. He had a catheter. He had an epidural machine. A normal saline drip and a morphine button.
His lips and mouth were dry. He sounded weak and eyes kept closing. But they then sat him up and he was drinking water and talking. He complained of pain in his shoulder. I told him this was normal and is actually transferred pain.
The nurse looking after him let me see the surgery notes. Findings were an upper pole large RCC with adrenal adherent amongst other things like veins and arteries. I tried to remember but haven't. The removed the whole kidney and the adrenal gland and the procedure actually only took 2hours and 45 minutes! He lost a litre of blood. No other complications. He's got disolvable sutures inside and staples on the outside.
She said to ask if I didn't understand anything. I actually understood more than I thought I would!
Then one of his anaesthetists came to chat to him about the importance of moving and using his pain
relief for relieving the pain. Don't be brave and don't be still!
The other doctor came, the one who'd led him away in the morning. She said he looked good and that he'd done really well. I asked her about the kidney and she said it was massive. Which is why his scar was so huge. I asked her about the broken table. She said
They'd positioned him on his right side, then they 'break' the table by making a large /\ shape so his left side is stretched right out.
Found this on google images
Looks comfy doesn't it?! So actually some pain will probably come from being in that position for so long! They said it was Hobson's Approach, something beginning with S and a word like Thunderbolt was used too. I didn't ask about these. I may do today.
It said he could have a light breakfast the next day and be up out of bed. Moved to a ward when appropriate and then discharged when ready.
He will go back and see Mr Cutting in four weeks time.
It was clear and we knew already that good rest is the key to recovery so we left him and came home.
For the first time in weeks I sell through from 11pm to about 6am.
I've just rung the ward now. He had a non eventful night and the physics were there with him helping him out of bed. OUCH!
I've just rung the ward now. He had a non eventful night and the physics were there with him helping him out of bed. OUCH!
Thanks for all your well wishes. I think they worked! Who knew? The power of Blogger!!
Till the next time ...
Thursday 13 October 2016
Whip out a kidney.
That's what we say isn't it? Just whip out a kidney. Well, I'm home after an early start at the hospital - admissions at 7.15.
I've just left a very drawn, worried looking soul in a rather fetching gown and stockings. We walked out of the ward, me and my dad went one way. A very glamorous young blonde led him off the other way.
I can ring up later this afternoon. Now to wait.
Till next time....
Wednesday 12 October 2016
24 hours to go
Thank you for all the messages of support.
So, this morning we went back to the admission Ward for 10am. He had another blood test and we settled in for the wait. We went on a date - the hospital has a costafortune coffee shop so we had a gallon of latte. We watched mind numbing daytime tv and finally at 1.15pm we got the good news. His calcium levels were still within the normal range and the operation will go ahead tomorrow.
I've got a giant lump in my throats and chest. It's a hysterical lump apparently. He is nervous beyond belief. We are just watching TV with our two grown up children dreading the night ahead.
We have to be on admissions at 7.15am. My Dad is taking us.
Till the next time...
So, this morning we went back to the admission Ward for 10am. He had another blood test and we settled in for the wait. We went on a date - the hospital has a costafortune coffee shop so we had a gallon of latte. We watched mind numbing daytime tv and finally at 1.15pm we got the good news. His calcium levels were still within the normal range and the operation will go ahead tomorrow.
I've got a giant lump in my throats and chest. It's a hysterical lump apparently. He is nervous beyond belief. We are just watching TV with our two grown up children dreading the night ahead.
We have to be on admissions at 7.15am. My Dad is taking us.
Till the next time...
Monday 10 October 2016
What a day! Monday 10th October 2016
How we are all not dead from stress I don't know. The morning started pre 6am for us both. Me in our bed, him in his hospital bed. I couldn't eat a thing due to the real physical feeling of a knot right in my throat. He had tea and toast. He had no appetite for it. Then was only allowed water until 11am. We spent the morning talking and texting. I wasn't allowed to go up and wait. Which I find unreal. What if something awful happened on the table?
Anyway, my sister came and took me on her trip to the bank and for a posh frothy over priced coffee in town. Whilst in town, he rang. The Doctors had been round. They told him that although is calcium levels had come down, they were still higher than 'normal' so the decision as to wether the surgery went ahead, lay with the anaesthetist who would be along later....
We knew the surgery was scheduled for 1ish. So we 'settled in' for the wait. Him in hospital staring out the window digesting all the new information. Me staring at my phone having updated everyone and waiting for any news myself.
1ish - no anaesthetists
1.15ish - anaesthetists had been round, yes he could go ahead - gave him a whole heap more scary procedures that would happen, but they were waiting on confirmation that there was a High Dependancy Unit bed for him after the op.
1.30 - he rang to tell me. I got ready and got up there for visiting at 2
Whilst I was there, his surgeon - and I kid ye not about his name - Mr Cutting, came to speak to us.
It was bad news. No ICU bed. He wasn't prepared to do the surgery without the allocated bed. He was worried though that the calcium levels would rise. He also said it was too late because the operation would go well into the night. So the new plan
Return to that admissions ward at 10am Wednesday for blood tests. Wait for results. If needed, straight onto ward for treatment. Operation would go ahead ( ALL BEING WELL ) Thursday Oct 13th which was his original date. We could go home, be 'normal' for 2 nights before it started again.
Both of us understood why it'd been postponed. The hospital was chokka. It'd been on the local news begging people to stay away from a and e unless it was a life threatening or serious ( bone break ) injury. There were 7 ambulances stacked up outside a and e.
The nurse told us that if a patient isn't seen treated and sorted in 4 hours of arrival, then the hospital gets fined £1000s. The reason there are not enough beds isn't the fact there are not enough physical beds with mattresses, it's because there are not enough doctors and nurses working to staff them safely. There are not enough doctors and nurses working to staff them properly because the hospital has no money and it can't afford them. It is ABSOULTELY CRAZY. On the ward where he was ( acute surgery ) there were 9 beds. Only 5 were filled. The nurses were fantastic but stretched and stressed to absolute breaking point. One man, clearly desperately poorly, came onto the ward, his whole family were there and the priest came to give last rights. There were no side rooms for him to go into. So so sad.
Anyway
The operation. Forgive me if I'm repeating myself but this is what we were told at pre op
He'd be an hour in the anaesthetic room, 5-6 hours minimum in theatre, an hour in recovery.
He'd be 24 hours minimum on ICU with drainage tubes, catheter etc maybe an epidural for pain relief.
The surgeon came and spoke
He would be cut from *here* to *here* - ( imagine the surgeon's fingers running around the left hand side of your rib cage from belly button to back bone )
He'd be having an epidural as well as ordinary anaesthetic.
Some of the 'coulds'
They could enter his lung cavity - meaning collapsed lung and chest tube in
They could damage his spleen meaning internal bleeding/splenectomy
They could damage his bowel - bowel perforation/twisted bowel -meaning peritonitis-toxic shock - death so IV antibiotics and then further surgeries
They could damage blood vessels - internal bleeding - blood transfusion
Etc etc etc
But there again, they might not.
He'd be at least an hour in the anaesthetic room being prepped
At least 8-10 hours in theatre
At least an hour in recovery
Then minimum 24 a 48 hours in intensive care depending on what happens during the act of the left radical nephrectomy itself.
So after the massive build up, I had to ask our brother in law to come pick us up from the hospital because I'd taken all his clothes and shoes home so he had to come home in his pjs and slippers!!
Once home, it was lovely to just have a cuddle without a drip in the way and I thought we would sleep soundly. Neither of us did. I had such a tense neck and shoulders. He was up for lots of wees because he was keeping his fluids up.
The head stuff has set in now. He complained of pain in his kidney area for the first time yesterday. He admitted he is now paranoid. It's almost like the cancer is a diddly little insignificance compared to the mammoth ( hate to use the word journey gah!) mountain he has to climb ( even worse!!! )
Can't wait to get back to normality and the mundane.
Till the next time...
Sunday 9 October 2016
CT Scan and beyond
As promised on post 'Day 4' here's what happened next .
The scan.
He went in the room. And was out again within 15 minutes! Painless.
He was told that the results would be discussed and then there'd be an appointment sent.
The wait.
Seemed endless. Mostly because it was. After a week and a day I rang up the hospital to see what was happening. I was told there was a backlog of CT scan reviews but I should hear in next few days. Then on Thursday 22nd the letter plopped on the mat. The appointment was for Friday 23rd. I had to ring up. It was too short notice.
It was at that precise moment we kinda knew.
The woman on the phone hesitated ever so slightly and then rather guardedly said that did we know that 'they' needed to see him urgently?
Anyway, we could not do Friday and so it was set for Wednesday 28th September
I'm just going to do dates here.
26/06/16 - first blood in urine
08/07/16 - second sight, blood in urine
09/08/16 - GP appointment
25/08/16 - one stop urology clinic, mass detected by ultrasound
08/09/16 - CT scan
16/09/16 - I rang to see where letter was. Was told letter would be coming soon.
The scan.
He went in the room. And was out again within 15 minutes! Painless.
He was told that the results would be discussed and then there'd be an appointment sent.
The wait.
Seemed endless. Mostly because it was. After a week and a day I rang up the hospital to see what was happening. I was told there was a backlog of CT scan reviews but I should hear in next few days. Then on Thursday 22nd the letter plopped on the mat. The appointment was for Friday 23rd. I had to ring up. It was too short notice.
It was at that precise moment we kinda knew.
The woman on the phone hesitated ever so slightly and then rather guardedly said that did we know that 'they' needed to see him urgently?
Anyway, we could not do Friday and so it was set for Wednesday 28th September
I'm just going to do dates here.
26/06/16 - first blood in urine
08/07/16 - second sight, blood in urine
09/08/16 - GP appointment
25/08/16 - one stop urology clinic, mass detected by ultrasound
08/09/16 - CT scan
16/09/16 - I rang to see where letter was. Was told letter would be coming soon.
19/09/16 - rang again. The CT scan had been discussed on Friday 16th . These review meetings only happen on a Friday afternoon. A letter would be sent out.
22/09/16 - letter arrived, rang up, sorta knew.
23/09/16 - scheduled appointment we cancelled
28/09/16 - appointment with consultant. Official Diagnosis Day
30/09/16 - letter stating it in stark black and white
30/09/16 - me on Google in free fall despondency. I've stopped this insanity now.
Diagnosis
1. 15cm left renal tumour with para aortic lymph nodes on CT scan, indeterminate lung nodule.
2. Left loin discomfort suggestive of clot colic with visible blood in urine
3. Night sweats, possible para neoplastic syndrome.
Management
1. Listed for open left radical nephrectomy
2. Provisionally listed for 13/10/16
Then it goes on to basically go over what we were told in the consultation.
05/10/16 - pre op assessment - bloods, egg, go through operation schedule - find out that op brought forward to Mon 10th October
06/10/16 - The surgeon himself rang at 9pm. The blood calcium levels are too high. Drink a
minimum of 3l of water before 10am tomorrow. Come to admissions for 10am for repeat blood test.
07/10/16 - arrive on Admissions about 9.45am. Greeted by lovely nurse. Bloods taken and asked to wait for results as may need admitting for IV fluids and IV drugs to bring down levels. Apologies for wait but there ya go.
My dad had taken us and his cousin turned up with a relative and sitting listening to them reminisce passed the time. The results came back. Blood calcium still too high, had gone up in fact, so would be admitted. Wait for a bed.
2pm go to hospital restaurant for lunch. Back to waiting room.
4pm - my in laws arrived to sit with him, as I bobbed back home for hospital bag.
4.45pm - arrived back with bag, in laws left, Mr 19 arrives from work.
6pm - back to restaurant for tea. Delicious food by the way.
7pm - admissions ward closes so we taken to the acute surgical ward
7.45pm - allocated a bed and cannula for drip inserted.
8pm - Mr 19 and me went home leaving him behind.
08/09/16 - Wake up ( after zero quality sleep )to just me in our big bed stupidly early because the alarm went off. The alarm went off because it's on his side and he turns it off at the weekend. I never gave it a thought. Text him. He's had 4 bags of IV fluids, one lot of medication into his vein and he was drinking a lot. Also doing massive wees every hour, with output being measured. Visited at 2pm. His fellow wardees included a prisoner in the bed across, handcuffed to the bed and accompanied at all times with two officers, in hospital for something kidney related, in Prison for.... Not sure but he wasn't allowed to eat with metal knives or forks. In bed next to him is a nice looking chap who is addicted to heroin. On methodone in hospital, for a huge infected swelling needle site. Goes out for a fag every five minutes. An elderly gent who is as ill with the same thing as I was five years ago and a young man with a young family, diagnosis unknown to me! I visit in the afternoon with Mr 19, his Mum, his Dad and his partner. All knocking on a bit and a bit deaf. And a bit prone to plain speaking. Interesting. Noted - I'm not going with them again! Was just me, his sister n her hubby last night. A lot more civilised.
22/09/16 - letter arrived, rang up, sorta knew.
23/09/16 - scheduled appointment we cancelled
28/09/16 - appointment with consultant. Official Diagnosis Day
30/09/16 - letter stating it in stark black and white
30/09/16 - me on Google in free fall despondency. I've stopped this insanity now.
Diagnosis
1. 15cm left renal tumour with para aortic lymph nodes on CT scan, indeterminate lung nodule.
2. Left loin discomfort suggestive of clot colic with visible blood in urine
3. Night sweats, possible para neoplastic syndrome.
Management
1. Listed for open left radical nephrectomy
2. Provisionally listed for 13/10/16
Then it goes on to basically go over what we were told in the consultation.
05/10/16 - pre op assessment - bloods, egg, go through operation schedule - find out that op brought forward to Mon 10th October
06/10/16 - The surgeon himself rang at 9pm. The blood calcium levels are too high. Drink a
minimum of 3l of water before 10am tomorrow. Come to admissions for 10am for repeat blood test.
07/10/16 - arrive on Admissions about 9.45am. Greeted by lovely nurse. Bloods taken and asked to wait for results as may need admitting for IV fluids and IV drugs to bring down levels. Apologies for wait but there ya go.
My dad had taken us and his cousin turned up with a relative and sitting listening to them reminisce passed the time. The results came back. Blood calcium still too high, had gone up in fact, so would be admitted. Wait for a bed.
2pm go to hospital restaurant for lunch. Back to waiting room.
4pm - my in laws arrived to sit with him, as I bobbed back home for hospital bag.
4.45pm - arrived back with bag, in laws left, Mr 19 arrives from work.
6pm - back to restaurant for tea. Delicious food by the way.
7pm - admissions ward closes so we taken to the acute surgical ward
7.45pm - allocated a bed and cannula for drip inserted.
8pm - Mr 19 and me went home leaving him behind.
08/09/16 - Wake up ( after zero quality sleep )to just me in our big bed stupidly early because the alarm went off. The alarm went off because it's on his side and he turns it off at the weekend. I never gave it a thought. Text him. He's had 4 bags of IV fluids, one lot of medication into his vein and he was drinking a lot. Also doing massive wees every hour, with output being measured. Visited at 2pm. His fellow wardees included a prisoner in the bed across, handcuffed to the bed and accompanied at all times with two officers, in hospital for something kidney related, in Prison for.... Not sure but he wasn't allowed to eat with metal knives or forks. In bed next to him is a nice looking chap who is addicted to heroin. On methodone in hospital, for a huge infected swelling needle site. Goes out for a fag every five minutes. An elderly gent who is as ill with the same thing as I was five years ago and a young man with a young family, diagnosis unknown to me! I visit in the afternoon with Mr 19, his Mum, his Dad and his partner. All knocking on a bit and a bit deaf. And a bit prone to plain speaking. Interesting. Noted - I'm not going with them again! Was just me, his sister n her hubby last night. A lot more civilised.
09/10/16 - He's texted to say temperature up but the Op is going ahead tomorrow all being well. I'm going to see him in a couple of hours with fresh towels and pjs. That's as much as I know.
Until the next post....
Thursday 6 October 2016
The next day
So,I'm not even sure where I'm up to in the order of things. Stuff has been happening at breakneck speed. I will document it here when I've a minute to breathe.
I'd like to day though, that I'm really appreciating all the messages, texts and emails of support. Even f I don't get back to you, I love you all for thinking of us xx
I'd like to day though, that I'm really appreciating all the messages, texts and emails of support. Even f I don't get back to you, I love you all for thinking of us xx
Sunday 2 October 2016
Day 4
So, we came back off our holidays to The Letter.
The appointment was on the same day around the same time as my Friend's Mum's Funeral. So He went to his appointment and I went to the funeral. I wish I'd been able to be in both places at once.
It was kind of a one stop clinic.
Blood tests, pretty painless
Prostate exam - finger up the bum - a little uncomfortable but pretty painless
Endoscopy of the bladder via the urethra - "FUCKING HELL IT HURT" and that folks is a direct quote from my man. He said having a thin tube "up my knob brought tears to my eyes."
Ultrasound Scan of the kidneys.- totally painless
Until..the radiographer tells you that something isn't right.
Back in the room with the Junior Doctor who tells you ( in his foreign accent making it tricky to really understand says He ) that the ultrasound showed a large mass on your left kidney approx 110cm by 60cm. It could be cancer, this or that or the other. He said back at home, once the C word was mentioned. Everything else went blank.
So we wait now for an appointment for a CT scan. Family are told. Work is told. Everything goes on hold. Sleep has gone. I'm doing my best to try not to worry because worry steals your happiness etc and does absolutely no good.
We are almost up to speed. CT scan and beyond next post.
Day 4-Done.
Saturday 1 October 2016
Day 3
OK.Day three of this blog brings me to telling you how it began.
It was the day after my birthday at the end of June and He noticed blood in his urine. I insisted he should go to the doctor. He insisted he would if it happened again. I took to google. Loads of things it could be but nope, the schedule wouldn't permit a trip to the doc. He was adamant. I wish I'd nagged more now. Anyway, I made a note of it. Also noted that He had really pulled his back at work the day before. Was it linked? It reminded us that he'd had a really really tender painful area in his back, on the left side, just below his last rib. It's funny how you see all the warning signs clearly after the event. We put it down to muscle tear after he'd lifted a massive window frame up high.
Fast forward to the first week in August. ( from my notes )
On the Saturday -bad back
On the Sunday - bad back and felt off it in the evening. Had a lemsip.
Super sweaty in bed. Figured flu.
On the Monday - blood in urine.
On the Tuesday - GPS
First visit in over 17 years I think. he suffers with disc trouble and sciatica and bad back so now HE goes straight to Private Sports chiropractor for manipulation ( out of his £££!!! ) as GP says lose weight and go on waiting list for physio.
Anyway due to symptoms
Pain, fever, blood in urine, passing painful clots which interrupted flow. GP said kidney stones.
Take painkillers but all the pain etc was probably from just passing the stones.
He came home but then was in crippling agony right across his left side. Writhing and crying out in pain. I've never seen Him like it before. Peeing what looked like pure clotty blood again.
Then all settled and was ok. Urine returned to usual colour. GP referred to Urology one stop clinic.
This was because all men aged between 45 and 65 since the NICE report are sent for further tests within two weeks.
https://www.nice.org.uk/guidance/ng12
https://www.nice.org.uk/guidance/ng12/chapter/1-Recommendations-organised-by-site-of-cancer
Specifically 1.6.6 Renal Cancer
https://www.nice.org.uk/guidance/ng12/chapter/1-Recommendations-organised-by-site-of-cancer Specifically 1.6.6 Renal Cancer
https://www.nice.org.uk/guidance/ng12/chapter/1-Recommendations-organised-by-site-of-cancer Specifically 1.6.6 Renal Cancer
So there was no visible haematuria, no pain. Yes there was weight loss, but that could be explained by effort. Extreme fatigue - explained by being over 40 and working 12 hard hours daily in all weathers for five days a week. Satisfied it was Kidney stones ( although I'd been worried since my birthday in June ) we went on holiday.
A lovely (almost) carefree week away. We came home to find the letter with His appointment on.
Thursday 25th August 2016
That'll do for now.
Day 3 -done
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