Trishka's blog

Coming Home

2009-11-07T12:47:06Z

Hi everyone,

It's our last full day today and I really should be packing. Somehow or other we have alot more 'stuff' than we came with... can't blame it on the shopping expedition to the biggest Mall in America either as it didn't materialise. The trip takes about 1 1/2 hours and the bus didn't have a loo so we could not go. Restrooms (American word for loo) have become quite a priority in our lives - we know every one of them within a mile radius of the condo. I worry about becoming a restroom loiterer as I seem to spend alot of time doing just this...

We've had a week of doing 'firsts'. First dinner out during the evening, first trip to the local Mall, first meal out with company, first visit to the cinema - all basically to give us the confidence of tackling the long journey home. Andrew passed with flying colours - coping with everything that I threw at him. He's still getting used to his new waterworks. Although he looks the same (just a few extra scars here and there), the new bladder works very differently and it takes a bit of getting used to. He is still very tired and not surprisingly as his night time sleep is interrupted every hour or two by a trip to the loo. He tries to make up for this by taking lots of naps during the day - and little by little he is returning to 'normal'. His appetite is well and truly back to normal and although the majority of his diet is 'soft' he is introducing the odd 'naughty' titbit which up to now has proved harmless. He has to drink 8 - 10 glasses of fluid every day and he's managing this too with no problems - even has a glass of wine!

We have been here in America for 6 weeks and I have to say that it's been an incredible journey for us both. The doctors and nursing staff at the Mayo Clinic have been incredible - we can't thank them enough for giving us our life back.

Our long awaited journey home starts tomorrow.......

T & A x

ps we could not have done it without all the love and support we received from you all xox

Trial Run

2009-10-29T21:43:09Z

It's Wednesday, October 28th - bit of non day weatherwise (dull, grey skies with a bit of a chilly wind) reminds us of home on the Isle of Man. Andrew had quite a good night - he's now waking up every 2 hours during the night to visit the loo. His appetite is good too, eating 5 small meals a day which keeps me pretty busy either cooking or shopping. He still looks pale and wan and feeling very tired most of the time but he is in good spirits and starting to sound like his old self.

At the moment life revolves around the bathroom. If we venture out along the Skyways & Subways, we have to know that we can get to the washroom pdq. Bearing all this in mind I decide that today is the day to attempt our first excursion together to a local Mall. The mission is to buy Series 4 of House - we've spent the last four weeks watching this hospital series day after day, evening after evening - it's pretty well kept us sane. So we set off, first the courtesy car to Mayo Clinic (not very far away and quite walkable but don't want Andrew to use up all his energy at this stage...) From there we caught the number 7 bus and arrived at Apache Mall ten minutes later. Two visits to the Mall washroom, a cappucino, and our House series purchase - our mission accomplished! We were home within 2 hours - just in time to catch the phone call from Andrew's surgeon wanting to know how things are going. A big thumbs up all around......

So why Trial Run? Well, I've heard that the biggest Mall in America is just an hour away in Minneapolis - there's even a coach to take you there... today was just a practice session!
love
T x

Recovery - Part 2

2009-10-25T14:01:15Z

Hi everyone, we left hospital on Thursday evening with Andrew still feeling a little wary of getting through the night and being in 1 piece by morning. I understood his concern as he had to be rushed into ER the day after his biopsy last June - after catheter removal he could not pee so had to rush back to be emptied. And then just last week he had to be re-admitted after 1 night at home with abdominal pains (which turned out to the the 'kink' in his intestine.) The Doctors at Mayo also understood his concern so just before we left on Thursday they taught him how to catheterize himself and gave him the kit with 2 sizes of tubing. Of course, we got through the night in 1 piece but it gave him the confidence he needed. Three nights have gone by and he's still doing ok. He's very tired and looks quite frail which is not surprising as he's lost 14 llbs. The day after discharge we had an appointment at the Mayo Clinic - fortunately our condo is attached to the clinic via the Skyways & Subways. It is not too far but it took us about 20 mins and Andrew was jiggered by the time we got there. It was well worth the effort and the Doctors just wanted to make sure he was ok.... we can't speak highly enough of the Mayo system.

When we left the hospital, Part 2 of the Recovery Program began. The operation bit is just one small part of the whole process and I can see that this next bit is going to take quite a while. All the 'new-neo's' out there will know what I'm talking about but for our family and friends this means that Andrew has to go to the loo every hour - day & night - until he's trained his new neo to behave like a proper bladder. His new neo doesn't have the muscles like we do to control it. During the day is not so bad as you can organise life around Public Washrooms (we know every one of them between here and the Mayo..) but night time is a killer. Andrew puts the alarm on & dutifully gets up to pee..... he's very pernickity, so it's not unusual for him to shower a couple of times too. I popped into the Mayo Shop and purchased the necessary 'gear' to help things along and protect bedding etc but it doesn't alter the fact that you don't get alot of the really good sleep that you need.

We are still managing our small walks. There was 4 inches of snow on Friday so our Skyways & Subways proved very useful - we can wander around downtown Rochester without even a coat. Last night we ventured down a new Skyway and came across a Barbershop Quartet competition - only in America! Today, we are planning to walk to the Barnes & Noble bookshop. It's nice there on Sunday - bit of music, coffee shop and loads of musing to do and then back home for Sunday lunch. Not my usual prime roast beef, yorkshire pudding and 6 veg as there is no way Andrew's digestive system could cope with it. He's missing 18 inches of intestine which his bowel has to readjust to. Andrew is sticking to the Soft diet - little and often - and this seems to be working (no cramps) with lots of fluid in between. If anyone out there has any good recipes for the 'Soft diet' I would welcome them....in the meantime, it's cheerio and thumbs up from us both. love T x

I want to shout...

2009-10-21T17:23:01Z

... from the rooftops! Last night Andrew tried cream of tomato soup - his tube was clamped and this was a test to see how well he tolerated it. Great success, so this morning the NG tube was removed from his stomach and he tucked into a bowl of oatmeal, topped with brown sugar and full fat milk. We did a couple of walks around the quadrangle and now he's studying the menu for lunch - his appetite is definitely back and it was with great reluctance that he ordered the omelet (he's longing for something a bit spicy....)

I can't tell you how overjoyed we are - the catheter comes out tomorrow morning and we are on target for an afternoon discharge. YEH YEH YEH
Your prayers worked!
love
T x
ps he looks wonderful!

Found the culprit

2009-10-20T15:27:30Z

Tuesday, October 20th
When Andrew had his CT scan last week they noticed a pool of fluid lying right next to his new bladder - it was a lymphocele. He had 46 lymph nodes removed during his surgery so not surprising really that this little pool had formed. Normally, it is absorbed by the body but in Andrew's case there was an awful lot of it. Yesterday they put a drain in to remove it - 310 ml came out!
Almost immediately, the pressure he had been feeling went away and, more importantly, he needed to use the loo! Can't tell you how much relief we BOTH felt!
More movements this morning too - looks like we won't be able to walk too far away from the bathroom today.
He still has NG tube in to his stomach but it is clamped for the moment - Dr wants to see if his system is really up and running before taking the tube out.
Thank you all for the great responses we've had - you have been so supportive. I never once felt that I was here on my own, so thank you all T xxxx

ps forgot to mention that the catheter comes out on Thursday

The Watch & Wait Game

2009-10-16T15:15:50Z

Hi Everyone, it's been a week spent on a roller coaster!

I walked into Andrew's hospital room on Tuesday morning and he was hooked up to a stomach pump - I could have cried. He has been complaining of abdominal pains for a week and it seems they are caused by a blockage in the intestines. His digestive system hadn't woken up and it was creating havoc. They put a NG tube up through his nose and down into his stomach - he said it was deadful and very uncomfortble and he looked downright miserable. I think Tuesday was our lowest day....

It's now Friday (2 weeks since the operation) and he is still in hospital, still hooked up to the stomach pump. He has 2 IV's and the catheter and he hasn't had anything but sips of water for 2 weeks. I lie a little - he was allowed watered down Sprite yesterday... Doctors have taken the conservative approach - they want his bowel and intestines to wake up themselves. They tried suppositories and Milk of Magnesia and we walk alot but the bowel is refusing to budge. Yesterday, they sent him off for a scan. They wanted to get to the 'bottom' of it. Dr came to see us at about 7pm last night and showed us the scanned images - there is a 'kink' in the intestine which is causing the problem. Andrew says that it's like having a hose pipe with a kink in it. His new neo bladder is working perfectly though which is great news. So it's now a waiting game... Dr warned that it could take a while so we are now looking into possibly getting set up at the condo with all the gear required to keep the stomach pump going and the IV's. He's going to have to get drip fed too. So we watch and wait.....

love

T x

weather here is following a similar pattern - we've had snow showers all week and they have promised 60 degrees this Sunday - weird!

A pot hole in the road to recovery

2009-10-12T22:15:30Z

We spent a lovely few hours in our rented home - we even had dinner at the dining table (Andrew only having what is considered to be 'soft' food). We went to bed and before too long Andrew was up and about complaining of pains in his abdomen. He tried irrigation and pain killers but no improvement. By 6:30am he was totally exhausted and still in pain so I called the hospital and asked for the urologist. By chance one of his doctors answered and told me to get him to the clinic asap. After 3 irrigations there, and with Andrew still complaining of abdominal pain, he was re-admitted to St Mary's Hospital. They took blood tests and he's just gone off for an X-ray. Doctors think it's his bowel not properly waking up but we should get the results within the hour and know more. Looks like he will probably have to stay here for a couple of days until it's sorted - 2 more days of water only.
Boo hoo... back to Chief Carer's assistant!
love
T
ps the hospital grounds looked like a wintry wonderful this morning with the snow

Home Sweet 'Home'

2009-10-11T21:03:13Z

Home for the next 4 weeks is a condo downtown Rochester, USA. We left St Mary's Hospital after lunch (Andrew ate poached egg and portabello mushroom on toast). It's a cold day (39 degrees at 1pm) but the sun is shining and it feels so good to be going 'home'. The doctors, nurses and staff at St Mary's have been terrific - we are completely overwelmed with the good care and kindness shown by all. The staff on the 7th floor packed us off with sandwiches for tea and bottles of various flavours of LifeWater to keep Andrew going till I get to the shops. We needed a trolley to get all our stuff to the front door - by now we had 3 laptops going and the hospital room looked more like an office than a sick room. I had to take enough white vinegar solution and syringes too as today is Sunday.

The doctor prescribed Andrew a sleeping pill last night and he slept soundly for 7 hours - he woke up this morning feeling almost brand new. He has upped his intake of fluid too - he's now trying to stick to a regime of 200ml per hour. Perhaps he should have done this when they removed the IV and it was dehydration that was causing him the stomach pains. Well, his advice to anyone in the same boat is to drink lots and walk lots.

We only got a light dusting of snow yesterday and it didn't last long but it is forecast again for tonight. Luckily our condo is attached to the Mayo Clinic and shopping centres and restaurants via Skyways and Subways so we don't have to worry about ever going outside. We're more than happy now though just to sit here and relax and enjoy being normal again.

Before I say cheerio, we want to thank you all for kind words, thoughts and prayers - you gave us strength!
love
Trish & Andrew
x
ps will keep you posted as things progress

I week on...

2009-10-10T02:22:46Z

Friday, October 9th 2009

I can't believe that a whole week has flown by. And, oh what a difference those 7 days make. Andrew began eating again yesterday. He had a small cup of chicken broth and then later he had a very small portion of cream of wheat. His body seemed to cope well .. we do have to do a fair bit of walking the halls in order to activate the digestive system but the main thing is that it's working. He also had the IV removed so no saline solution bloating the body and no magic pain button. He's taking the odd pain killer orally mainly at night to ensure a good night's sleep.

This morning he had one kidney stent removed and this evening another one. He still has a drain from the interstitial tissue and the catheter, the latter remaining for probably 2 more weeks. He's also learnt how to irrigate himself and the irrigation itself has become alot easier and painless. The doctor has said that he can go 'home' on Sunday - amazing really that the body can go through all that and recover so quickly!

His face has broken out in sores - something that always happens when his body is stressed - like not getting enough sleep - I had bought Zovirax with me but Doctor prescribed him the systemic version which is far more powerful and should clear it up pretty fast.

Well, as for myself, from Sunday on I am being promoted from Assistant Carer's Chief Assistant to Nurse in Charge - the shelves are stocked with chicken noodle soup and I can hardly wait to get my new man 'home'.

Keep you posted...

love

T x

ps Snow is forecast for tomorrow!

5 days post op

2009-10-08T09:21:14Z

It's a cold crisp day and the sun is shining in a perfectly blue sky. Inside our hospital room, Andrew continues to make progress. Today his bowel 'woke up' which meant he could have his first meal in 6 days - a small cup of chicken broth. He sipped it very slowly making it last as long as possible. The next hour proved pretty eventful - getting in or out of bed usually takes about 10 mins by the time you have unplugged the IV stand and untangled all the drip tubes and drainage bags and then there's the electric leg stimulators to stop blood clots - well, I can tell you that we have the whole procedure down to about 20 seconds. Quite important when you need to get to the bathroom in a hurry!

He continues to have a bit of a problem with irrigation of the catheter and stents - the new bladder is quite tiny and has to be stretched slowly so when they pump in the saline fluid, neo has a bit of a paddy. The irrigation takes place every 6 hours now and it's an absolute necessity as it flushes away the mucous. For the benefit of friends and family, the intestine produces mucous to help things slide down and the new bladder is still a piece of intestine so it continues to produce the mucous. Watching the tubes and the drainage bags has become a bit of a pastime for us - it's a bit like looking at pond life....

Daily walks are now up to about 6 treks around the quadrant here on the 6th floor. The walking has to be done but it's now become quite uncomfortable as everything is swollen - doctors and nurses all say that it will be back to normal within a couple of weeks.

Andrew slept alot today - had a bit of a blah day, I think mainly because of all the swelling. I have noticed though that he hardly used the magical pain button which is a good sign. Whilst he was sleeping I managed to catch the courtesy bus to the shopping Mall - snow has been forecast for the weekend and I don't have my winter coat with me. Darn! more retail therapy required!

I hesitate to be presumptive, but at this rate of recovery there's a chance we'll be back at the condo by the end of the weekend!
Will keep you posted.
love
T
x

3 days on...

2009-10-05T19:21:03Z

Monday, October 5th 2009

It's only been 72 hours since the op and apart from the many tubes/drains coming out of his body you would never know he's had a major operation (and a small one). This morning, he was able to shower (sitting down) and shave himself. He no longer needs the oxygen but still has the saline/sugar/pottasium drip and the magical push button for pain.

He's had a couple of lows during the last 2 days all mainly to do with irrigation of the stents and catheter. At one point he was whisked away for a fluroscopy to make sure the new neo bladder was still intact - no bad news there, it's still all ok. It took until yesterday for 'neo' to realise that it's no longer a piece of intestine but indeed a bladder. The stent bags had been full of drainage fluid and the catheter remained practically empty but now it's the other way round and new 'neo' is working as it should.

He's still not allowed anything to eat and drink and amazingly he's not hungry. I feel a bit guilty sitting here with my toasted bagel but he's bothered at all by it. Nurses and doctors keep listening to his bowel but there's nothing more than a few grumbles. To help it along we went on a quite a walk this morning. I wasn't so sure he would make it back but on he went, quite determined. At lunch time we set off again on quite a long trek and visited a cathedral (yes, a cathedral) which is located inside this very hospital. We sat quietly for a few minutes (Andrew dozed....) and I said a private thank you ...

He's sleeping now and probably so should I.....

love

What a difference a day makes...

2009-10-03T22:13:31Z

Saturday, October 3rd 2009
Andrew had a fairly good night. He was in and out of pain and in and out of sleep. He wakes up mainly to push that pain button.
7:45am Dr Karnes arrives and shakes Andrew's hand, "hello partner". He spent 15 mins telling us about the operation - he is very pleased with the outcome and said that Andrew is a star patient. Yesterday, he gave me a box with the gallstones in it - there are over 50 of them and quite large. No wander Andrew suffered with them but in a way I'm hugely grateful because without them the cancer would not have been diagnosed. Dr Karnes looked at the wounds and I saw them for the first time. He has 3 bandaids on his upper right side from the gallbladder op. He has a small drain on the left side which will be removed in 3 days and another quite large drain on the right side - both are stents draining the fluid from the operation area.
9:20am Time for morning constitutional. Somehow or other Crystal, the nurse, manages to get Andrew standing on his feet and together with a tall walker he goes shuffling off down the corridor. He manages about 12 yards on the first outing and he doesn't quite manage to walk back. Crystal had to grab a chair and wheel him back to bed. It did knock him out though and he managed a 40 minute nap and I managed to get down to the cafeteria for breakfast.
12:00 2nd walk of the day and this time he manages at least 30 yards and didn't need the chair at all. Poor thing cannot have anything to eat or drink and he is so thirsty all the time. Crystal said that it's the after effects of the anaesthesia and the oxygen which he's getting constantly. He's allowed to put water in his mouth but has to spit it out. He's also allowed to chew gum and this apparently helps the bowel to start moving. Brushing his teeth this afternoon also cheered him up!
4:00 Another walk - this time he managed to get almost to the end of the corridor and back and then sit in the chair. All this effort earned him 4 smiley faces on his 'goals' billboard but sitting in the chair lasted only a few minutes as all that effort had tired him out and he needed to sleep. All in all an amazing first day.
Time has flown by even though I am only sitting here. Thank goodness the hospital has WIFI and I can sit here and write this...
Will keep you posted.
love to you all and many many thanks for all your kind thoughts and prayers - I read them all out to Andrew and we are both very touched.
T
x

Day of the big OP - Oct 2nd 2009

2009-10-03T15:59:07Z

We were told to arrive at St Mary's Hospital, Mayo Clinic, at 5:45am. We arrive at 5:30am. It's still dark outside and slightly drizzly. By 6:10am we are in a side room and Andrew is being prepared for surgery. Gown, white stockings, and non-slip slipper socks. People come and go, blood pressure, breathing 'toys' to be used post op to prevent pneumonia. Andrew and I talk about what's ahead. We both know that we are here in America because the doctor here gave us the best option of having a neo bladder which is what Andrew is desperate for. We also both know that it really depends on what they find when they open him up and there is every chance that he will be fitted with an illeal conduit (bag worn on the outside). They had performed, once again, all the scans yesterday. All it confirmed was that the chemo had very slightly shrunk the tumours but there were still there in the bladder - many of them.

We kissed goodbye at 7:00am and they whisked him off to surgery and me off to a Patients Waiting Room. They taught me how to use the big screen - a device that showed me exactly where Andrew was at any given time. A nurse introduced herself and said she would be our 'go between' and that she would keep me posted at regular 2 hour intervals on how the operation was going. I plugged in my laptop and made use of the WIFI - one eye on the silly game I was playing and the other on the screen. I knew it was going to be at least an 8 hour operation as the Doctor had agreed yesterday to bring in another specialist doctor to perform a keyhole gall bladder removal prior to the bladder removal operation. Gall stones had been Andrew's original complaint and the only reason he had gone along to our local GP in the first place. It was then that they saw the gallstone and also the microscopic blood in the urine. So, in a way, I was very thankful for those horrid little stones!

At 10:00am the nurse came along and woke me up (still jet lagged of course) to tell me that the gall bladder operation was completed and that they had now started on the bladder and prostate removal. Meantime, I was rooted to the spot. I dare not even move off to the cafeteria in case I missed something going on, on that screen. They had blue-coated volunteers there coming around offering complimentary soft drinks or coffee/tea/chocolate so I made do with that and the cereal bar that I'd brought with me from home. At about 2:45pm a nurse phoned the room and asked for me. She told me that Dr Karnes had asked her to call me to tell me that he was now building the new bladder. I sat back down. It took a full 10 minutes before it dawned on me that this meant he was getting a neo-bladder and not the bag. I cried. I am getting quite emotional now just thinking about it. How very kind of the doctor who knew our concerns, to think of me and let me know. I tried to phone Andrew's mom and dad in Canada to share the news but they were out and I had to leave a bit of an emotional message - not sure they could even tell what I said through all the tears.

At 4pm Doctor Karnes came to see me. He took me to a private room and told me that the cancer had not penetrated the bladder wall, had not entered the viscorous fat tissue and all the lymph nodes had proved negative so no cancer there either.(They actually removed 46 lymph nodes I learnt later). He had been able to go ahead and make the neo bladder and everything had gone according to the text book. He was well pleased and I could have hugged him!

At 7:30 in the evening they finally bought Andrew to his room. It had been 12 1/2 hours since I said goodbye. He looked amazingly good even though he had wires and tubes and bits of electronic machinery attached to every orrifice. He was still groggy but able to make jokes. He had been in quite a bit of pain in recovery which was why he was delayed in getting back to his room. They set him up with his push button pain relief and after a little while he was as comfortable as could be in the circumstances.

He knew about his new neo-bladder as it was the first thing he asked about when he came round. I told him the good news that Dr Karnes had given me and we hugged each other with joy. All he has to do now is get better.....

... more tomorrow..

love from an elated and very relieved

Trish

Big Decisions

2009-09-24T19:15:15Z

... well, we met the Uroligist in Liverpool and he was a very nice man. Our plane from our tiny island to Liverpool was 4 hours delayed due to fog in Liverpool - bad luck or what? We arrived at the clinic in Liverpool and the surgeon had actually waited - he and us were the only people there! He spent quite alot of time with us too explaining exactly what the options were and that whatever we decided it needed to be done quickly and he was willing to alter his schedule to accommodate - really nice man, we were both willing it to work. Andrew has, right from the beginning, wanted the 'neo bladder' option. (For friends and family who are not familiar with this, it means building a new bladder from a length of the small intestine). The surgeon openly told us that he was more familiar with the 'ileal conduit', which is a bag worn on the outside of the body) and had only performed 4 of the neo bladder ops this year. Andrew asked him 'what would you do if you were me'? He said he woud opt for the bag as it meant less complications and quicker recovery. We asked him for 3 days to think it over. We left the hospital and flew to Fuerteventura - great sunshine, wonderful friends and a great big decision greeted us. What to choose? NHS and just a 25 minute flight from home or Mayo Clinic in USA - 24 hour journey by the time you add the 2 flights and commute. The surgeon at the Mayo is well praticed at neo-bladder surgery and has kept in touch with us via email & texts since the biopsy in June. We emailed him and asked him the same question 'what would you do? He replied (even though he was on holiday) Neo Bladder!

Andrew had enough info to make the big decision - it was to be the Mayo Clinic in Minnesota, USA and the op will take place on Oct 2nd.

We arrived home from our short but wonderful holiday in Fuerteventura today and we leave for USA in just 4 days time - just enough time for me to get our stuff turned around - say hi and bye to our good friends and neighbours and cut Jordie's nails (the cat)... who is not happy with us at all and try and sort out life for my 90 year old dad who lives with us.

I have not had much time to sit and ponder - I know we are in for a long slog - but I am very positive and I feel we are doing the right thing even though it is not the most convenient.

I will write again as soon as we get ourselves sorted in Rochester, USA. A million thanks to you all for every bit of love and support.

MRI scan results

2009-09-03T14:41:17Z

I would be lying if I said I wasn't just a bit nervous this morning as we drove up to the hospital. Hubby had been mentioning these gnawing feelings he had in his lower stomach and I detected that he was thinking that it was the tumours growing again. He's only just finished the 3 cycles of chemo - they couldn't be growing again that soon, could they? I've kind of learnt to 'read' the doctor/consultant's disposition. You can tell when there is something bad about to come out of their mouths. We met the Oncologist and I knew immediately that everything was ok. He first of all remarked on how well hubby looked and agreed that he had indeed 'sailed' through the chemo. He showed us the before and after scanned images and whilst there has not been a miracle, the tumours are indeed smaller. Also, the lymph node that had looked 'suspicious' was now looking 'normal'. He said that the operation to remove the bladder had to happen within 6 weeks of having the last chemo. That's a bit of a laugh really as we can't even get an preliminary appointment with the Surgeon who would be operating before Oct 2nd! We had a long discussion about this with the Oncologist - I think the problem lies in the middle of the bit of Irish Sea that separates us from UK and someone somewhere needs to get this sorted. Hubby is young enough and computer literate enough and bullish enough to bombard them (NHS) with emails, text messages, and phone messages but there are others out there who would not be able to do this and they will fall between the cracks. So the next step is to travel to Liverpool on Sep 11th and meet a urologist - not sure why, perhaps he is standing in for the surgeon and maybe they will do all the pre-op cardiac tests.... We decided that it might not be a bad idea to get a bit of sun into our bones. All our holiday plans were cancelled when hubby was diagnosed in April - the consultant was right when he said we had to write off the summer. So 10 days of R&R, a zillion miles from the doom and gloom, is what's in store and I can't wait! Hasta lluego! T X