Still Touching Wood!!

This, for a change, is going to be a short post! 

We are just drifting along at the moment - no ups but, amazingly, no downs!!  Touch wood!

Tomorrow Pete goes for the Cystoscopy which I am very nervous about - I hope it goes ok.  I am going to ask if I can be there when they tell him after it what, if anything, they found.  Obviously he won't be able to tell me what they say so, hopefully, they will let me be there.  We will see.

So that's it at this moment in time - drifting is good. I can live with that! 

Slightly Better, Touch Wood!

I am reluctant to say we are moving forward again because, as soon as I think that, they (whoever 'they' are) deliver another stunning blow.

A quick catch-up, the mattress overlay arrived last week.  I was expecting something about, perhaps, 1" thick - but horror of horrors, it is about 5" thick so we now almost have to use a ladder to get into bed (alright, slight exaggeration, but it is HIGH).  The only problem is that if Pete leans over to pick something up he nearly falls out so I have to hang on to him!! 

I cancelled the Catheter Removal Trial on Tuesday but have got the telephone number to ring to rebook it when Pete is fit enough.  He had a Cystoscopy booked for 24th October, but that has been brought forward to 1st October and, today, I had a phone call for an appointment in the Urodynamics Dept on 17th October.  These have all been at the request of the consultant urologist we saw when Pete got a rage on - hence these appointments are coming out of the blue as far as I am concerned! But it certainly seems that he is following up on finding a cause.

The District Nurse came yesterday and gave Pete the antibiotic injection and did the catheter change which went smoothly - just flinched a bit when the catheter went in.  As Pete ate absolutely nothing over the weekend and Monday she has decided he needs to be weighed, by them, every month, so has booked the first 'weigh in' for 24th October.

The social worker called yesterday and a very pleasant gentleman he is.  He is called Greg and has said we can have respite when necessary and is sending all the details.  Also he gave me information on the Carers' Group and what they can provide and they rang this morning to get things rolling.  I may never need what they offer but it is good to know it is there and I can access it if I want.

Pete is enjoying the liquid painkiller - need I say more!!!  I am only giving it twice a day (he can have it 3 times but he doesn't know that!!) and it seems to be solving the problem. He has been much more alert and is much happier with smiles being delivered fairly often.  

A friend from work (one of the lovely ladies) called yesterday with an apple pie, custard and cream which her sister had made for us - what can I say, I really do have some true friends.  That was so thoughtful of her and, as her sister wants to be a professional chef, it was really delicious and looked good even decorated with leaves on top!  Oh yes, and her springer, Lady, was with them!! Pete loved seeing her again. 

One last thing - I was able to leave Pete on his own for just over an hour on Tuesday - he said he would be ok, and he was.

Still waiting for the next blow but I am feeling good and hopefully will be able to deal with it - whatever it is.  If Pete feels good - then so do I. 

Crisis Point

Last week ended on a high - the ultrasound didn't show up anything to be concerned about, the hospital rang with an appointment for a Cystoscopy in October and a Catheter Removal Trial today. So far so good.  I felt really sick and ill Friday night and decided it was reaction to everything that had gone on but now seemed to be going forward.  Saturday dawned, the nurse came to change Pete's catheter now that he was on antibiotics after the infection, but decided to leave it as it was coming out today anyway.  Again, so far so good.  Then Hell came knocking again on Saturday afternoon - without going into a long convoluted story I will just say unbearable pain was involved, I just crumbled, couldn't cope and was basically a train wreck. I tried to get a Nursing Home but you can't go in as emergency admission unless a doctor or social worker is involved (fair enough really) - so no joy there.  I would have very happily waved Pete off at that point. 

Monday morning I rang the district nurses to request a catheter change and then just broke down to them completely - said I couldn't do it any more.  She said she would make phone calls and get respite and ring back.  When she rang back she had referred us as a priority to the duty social worker and had also seen that our GP had us down for a visit anyway following the hospital discharge a couple of weeks ago.  He rang about 12 noon (please note, just a foible of mine, but there is no such time as 12am or 12pm - it is 12 noon or midnight!  Just saying!!) not knowing what was going on so I told him and he said he would contact the microbiologist and then be up.  He arrived, on a push bike, about 20 minutes later! He examined and talked to Pete, decided he needed an antibiotic injection and a catheter change at the same time and he would also prescribe a morphine based liquid painkiller to be taken alongside his normal painkillers.  He would immediately go back to surgery and get the prescription done and get it faxed to pharmacy.  Would be available for collection in an hour.  Wrong!  Again, to cut a long story short, Mel and Martin eventually, after phone calls, got the painkiller at about 5.30pm, just before they closed.  This, I hasten to add, was not the GPs fault.  They did not have the stuff for the injection and would have to order it in, would be available early this afternoon.  I picked it up today so the nurse will be in tomorrow to administer it (thought I might have a go, but decided perhaps not!!) and do the catheter change.  Meanwhile I have started Pete on the new liquid and it seems to be doing the trick, he is much happier today.  Only problem is that he seems to be getting really fond of it!!!   

Somewhere along the line yesterday the social worker rang and, after talking to him and explaining doc had been and crisis point had passed, he arranged to visit us tomorrow - hopefully to tell me what to do if I get to that point again and also to discuss any help available.

I am not proud of myself for wanting someone to take Pete away and am eternally grateful that we survived that point and came out the other side.  It is impossible to describe my feelings at the time and no-one can really understand unless they have lived it - and plenty of people have I know - but you get really really desperate and consider the unthinkable options available.

So, I would never have thought we would need a social worker in our lives!  Who would have thunk it!!! 

But we do need one.  

I am not going to say we have turned a corner because I just know there is something bad around the corner - there always is at the moment.  Sorry, but I am being a pessimist, I can't help it, nothing is easy and what should be straight forward turns in a fight for us.  

That's it for today. Goodnight all. (Dixon of Dock Green - anyone remember that?!?!)  

In Limbo

Ok, I get it, we are officially on someone's hit list and they are scoring a bulls-eye every day!! 

Sunday passed with Pete in extreme pain in his groin all day - maximum painkillers but they didn't do the job.  I told him I would be on the phone to Urology on Monday morning and we would go from there. 

Monday morning dawned with Pete absolutely in agony.  I decided something must be drastically wrong and rang the surgery - then you have to wait for a dr to ring back.  Whilst waiting for that phone call, the out-patient appointments department rang - they had a cancellation and could Pete attend on Tuesday morning at 9.20am. - oh yessss!  Meanwhile by about 10.00am Pete had calmed down a bit after I had given him an extra painkiller.  The dr rang and said best thing was to wait for the appointment tomorrow and just keep giving painkillers.  So I just crossed my fingers and hoped Pete would be in a fit state to get to the hospital.  The rest of the day just passed in a sea of pain and tears.

Tuesday morning came and Pete, although still in pain, said he wanted to go to the appointment.  Off we went and I hoped we could get some answers - wrong!!  We went in and the consultant examined him for about 2 minutes, this did not go down well and Pete refused to get off the bed, I really had to force him.  The dr then said 'well, I can't do anything today' - wrong thing to say!  Pete went into a rage which turned the whole appointment belly up.  I got that the dr said he had an infection in his bladder and testicle and the pain was just radiating out from that.  They aren't allowed to prescribe any more so we were given a 'Recommendation for Medication' sheet to take to the surgery and should get tablets in 3 days time.  Martin took this to the surgery and handed it in.  This seems a ridiculous way of going on - but them's the rules!  That is all I managed to take in during the appointment because, as I said, Pete had gone into a rage so I was trying to listen to the dr, calm him down and just thinking 'I've got to get him out of here'.  The dr did his best and was talking about causes, treatments and investigations, but I have NO idea what he said.  I couldn't ask any questions or anything, so I don't know what is happening re the catheter and removing it.  After we had been back home for a while Pete decided to keel over on me again (this has become part of his repertoire now). As I now know he will come out of it I just leave him where he is until he resurfaces.  He also seemed to go into panic attacks yesterday where he started gasping for breath - I deal with that by making him look at me and tell him to calm down and breathe slowly with me.  

Today hasn't actually been too bad!  I have kept him dosed up with maximum painkillers, and more, and he has been much calmer, even doing a bit of work on his owl whilst listening to music.  About 3.30pm he had a bit of a turn, but other than that, fairly good.  So, you ask, what was the bulls-eye today?  Well, the district nurse visited and I told her about urology and that we could get antibiotics on Friday.  She said no, she would ring the surgery and make sure they would be ready for collection tomorrow (she didn't get here until 5pm so was too late for today).  She duly phoned straight away to be told they had no record of the Medication Request!!!! They had lost it! Unbelievable! After a few harsh words and speaking to a dr she told them to write the prescription (luckily I knew what antibiotic was named and how long to take them for - from past experience I read every prescription now!!) and get it faxed for collection tomorrow from the pharmacy.  I wonder who will draw the short straw and have to deal with me!!!  If they are not there I have to ring her.

We are now basically in limbo - I don't know what is happening or what to expect next.  Oh yes, we do have an appointment for an ultra-sound on Friday and I don't know what that will throw up.  Nothing good I know! 

I hope you are all faring better than us! 

Hard Times Ahead!

After picking up a bit yesterday, Pete seems very unhappy again today with a lot of pain in his groin. He is spending more time just lying on the bed staring into space and, probably, thinking about the pain he is enduring which doesn't help the situation at all.  He isn't interested in watching television or listening to music to take his mind off it.  He isn't walking at all well and, indeed, his legs just seemed to give way beneath him today and he ended up kneeling on the floor.  Not good.

The other major thing is that he now doesn't want to be left on his own at all.  This is going to mean I will have to rearrange my life to ensure this doesn't happen.  Plan A was to get a carer to come in whilst I had driving lessons or went to do shopping.  Unfortunately, this is not a viable proposition as our income has been drastically cut.  So now to find a Plan B!  It is probably going to have to be that I don't go to town at all and, hopefully, can get someone to pick me up anything I need when they are in town.  Then I can cut driving lessons to one a week and get someone to come here for an hour whilst I am out.  This seems a good plan - not the best thing in the world but do-able.  To only have one hour a week out of the situation here is going to be very very hard, and is a scarey prospect,  but, hey, Pete doesn't even get that.  

One of the lovely ladies that I used to work with came over this afternoon and it was so good to just talk about other things and forget everything bad for a while.

We are just about dried out now after the flood and I managed to get a lot of washing dried outside in the sun and wind today, before the gales and rain tomorrow.

I would like to say onwards and upwards but that looks increasingly impossible!! 

11th September

This date has great significance to everyone the world over, it is also significant to me as it was the date Pete came home from Bideford Stroke Rehabilitation last year and we were so full of hope.  Now it is going to be remembered by me as the date that life, not content with giving us a good kicking from time to time, decided to totally beat the living daylights out of us.  

It all started to go wrong at 4.20am when I woke and had to go to the bathroom.  Outside the bathroom I suddenly found myself walking in water so, after hesitation about putting the light on (had it come from the flat above? Electrics, would I get electrocuted? Oh, what the hell!) I pulled the light switch to find the bathroom and kitchen totally flooded, our immersion tank had overflowed over the top of it and water was pouring out at a horrific rate as our water pressure is really high for whatever reason.  After a quick panic, yelling to Pete to come (stupid, what could he do) I turned the water off - phew!  Ok, grab towels - only to find them all totally saturated, as was everything in the airing cupboard.  So, then followed 2 hours of using one of the hand towels in use to try and mop up what I could.  4 bucketfuls later I had mopped up the worst, ripped up the bathroom Lino and carpet and decided that was the best I could do for the moment.  At 7 am I rang our landlord, who lives next door, and he came straight round.  He had arranged for the plumber to come at 8am, and we pondered the question of how to dry the kitchen carpet which, luckily, was flotex so repelled rather than absorbed water.  He brought me lots of old towels and sheets to lay down to soak up what was left and then it has been the dehumidifier on all day today and, amazingly, it is dry now.  All the stuff in the airing cupboard (why do I keep so much in there??) has had to be washed and dried, and no sun so everything in the tumble drier which has pretty much been on all yesterday and today - washing machine, tumble drier, dehumidifier - our electric bill will be enormous, not to mention the water bill!!!  Not to mention all the water in the house, today I found our wheelie bin (full size) full to the top with water - it sits under the overflow pipe. Luckily Martin was here and managed, with a struggle, to tip it onto its side and empty it - gallons of water down the drain.  Somewhere in between mopping up I noticed that Pete's overnight catheter bag was empty - was it blocked?  Oh no, it wasn't sealed along the bottom so had just run straight through onto the carpet for several hours!  Another major clean up! 

So, could it get any worse? Surely not!  But, oh yes it did!  The plumber arrived, had to go to get a part, at which point Pete decided to keel over on me.  He passed out, no response, eyes rolling.  Call the ambulance - again!  By the time they arrived (not long) he was coming to a bit but was carted off to A&E - I couldn't go as was waiting for the plumber to finish.  The house got quite full with 3 paramedics and the plumber!  Eventually he was admitted to a ward for tests, etc and I was told he would be in at least overnight.  The dr in A&E was appalled at the saga of his catheter and said I had to insist on it being dealt with.  At 5pm the ward rang to say he could come home but they had upped some of his medication, they had referred him for an ultrasound scan for a small lump on his testicle (oh no!) and had referred him to urology - they assured me they HAD referred him so I will start hassling urology on Monday.  So yesterday was spent running between the hospital and coming home to pick up saturated sheets and towels off the floor, load and unload the washing machine and drier, then back to the hospital. I can think of better ways to pass the time! 

They decided the problem had been he basically got overwhelmed with the pain in his right side and just keeled over, so have upped his nerve blockers to 9 a day and see how it goes. Today he hasn't been quite so bad, but the pain is still there.

Now I wonder what else life has in store for us, it certainly isn't getting any better.  What have we done to deserve this - makes us wonder! 

And that's it - not looking forward to 11th September next year! 

Saga of Antibiotics!

Yesterday was a really rubbish day which began at 4.30am!  Pete woke me at that time to try to tell me something was not right with his catheter.  I still don't know what his problem was as he seemed to think it was blocked, it wasn't, then he thought it was leaking, it wasn't, but he definitely wasn't happy with it.  We had a cup of tea as I tried to convince him all was well.  Then he had some painkillers and he eventually went back to sleep for about an hour - but I couldn't as was still trying to figure out what the problem had been.  For the rest of the day I felt really depressed and also was very cold for some reason - just reaction to all the problems I think.  When he woke he still wasn't happy but I said he was on antibiotics and painkillers - nothing else to do, which he eventually accepted.

I am still trying to chase up an appointment in the Urology Department and he insisted I ring again, which I did.  She said she would check what was happening and ring me back - which, surprise, surprise, she didn't!! 

Antibiotics!  I left it on Wednesday that the surgery hadn't rung back, so Thursday morning I was on the phone to them again.  The lady I spoke to knew nothing about my Wednesday phone call and the GP was on a day off so she would get the duty doctor to ring, which he did within about 10 minutes!   He prescribed some antibiotics and would fax to pharmacy for me to collect.  So off I go to get them but it took ages for the pharmacy to find the prescription.  Back home I eventually go and Pete took one straight away, but about an hour later he had a violent shaking session and said he felt very odd!  This didn't last too long so I basically just let it go.  Friday morning he took another one and again said he felt weird (although no shaking) and threw the packet down to indicate he would not take any more.  So, on the phone again to the surgery!  Having established his GP was there I booked a phone call from him, but the receptionist was particularly officious and it was back to patient confidentiality again - would Mr. Dutt be there to take the call?  No, he has aphasia and I will speak for him.  I am afraid we can't do that with patient confidentiality. I said the dr. was well aware of the situation and would speak to me - just book the call!  I was a bit short with her as really had had enough without her opinions. The first thing the dr. did was apologise most profusely for not doing the prescription Monday - no excuses, he just hadn't done it and didn't know why not (scrub the black mark against him as he totally admitted he was in the wrong).  He faxed another prescription through to the pharmacy for me to collect.  Which I did within half an hour without too many problems.  There are about 5 or 6 people working in the pharmacy and I think, when they see me coming, they all disappear and pick straws and whoever gets the short one has to deal with me!!!  Things are never straight forward in there! 

Candy, the psychologist, came Thursday and Pete got on well with the session, but he did say his mood was good all the time - which it isn't! But I didn't say anything.  We talked about dogs and Pete having enjoyed a visit from a springer spaniel on Tuesday and his general love of dogs and she said she will bring her Lurcher with her on her next visit - so Pete was thrilled to hear that and is looking forward to it in two weeks' time.

Finally, two photos of Mivvi who has settled in very well!  Martin is still very nervous and terrified of scraping her or bumping anything, but he is a good driver and all will be well I'm sure! 

Up and Down

Yesterday we got our new car!  I'm not absolutely sure how Pete feels about it yet, he didn't seem overly enthusiastic last night but I think he is coming round to liking it.  He did have some difficulty getting in and out but that was because he wasn't used to it and it is slightly higher than our old one and also we have to get the position of the seat quite right yet - but we will get there I'm sure.  On the other hand, me, Martin and Robbie love it!  The controls seem a bit like a space shuttle to me but I'm sure we will get them sorted, when we were out last night all the exterior lights suddenly came on and this was a bit strange not to have to physically turn them on - it seems they come on automatically when the light starts to fade!  The most disconcerting thing is that there is no handbrake!!!  It is just a little switch/lever thing and it releases itself automatically but you have to remember to put it on when parking, it's really odd not to have to release the handbrake before you can move off!!  Martin is very nervous driving a brand new car and an automatic at that!!!  He did opt to have a driving lesson in an automatic beforehand so at least he had some idea, never having driven one before, which was very sensible.  We have decided, as it a Meriva, to call her Mivvi (all cars must have a name - our old one was Jazzle), I did suggest Meri but that was turned down by everyone immediately,  Pete and Robbie have approved Mivvi, but Martin says he is just going to call her spacebus!!! 

On the downside (there always seems to be one) Pete has got himself another infection to deal with.  The dr. came Monday and prescribed antibiotics - he left us 4 tablets to be going on with and said he would send prescription to pharmacy, fine, but when I went to collect them today they weren't there. So home to ring surgery and they were supposed to be finding out what is going on and ring me back, but they didn't!!  First black mark against dr., so now have no tablet for tonight, got to ring them in the morning.

This afternoon one of the lovely ladies, who was unable to come Saturday, came over for a visit and she brought her beautiful Springer Spaniel 'Lady' with her.  Pete had lots of smiles for her and she is so gentle and friendly - he really loves dogs.  We have thought about getting one but, at the moment, the cons outnumber the pros.  I know Pete would love to have one but it could be a bit dodgy with him  not so steady on his feet.  He did have a fall today trying to put the step outside the front door, he shouted for me and I found him sitting on the floor!  We managed to get him up ok and he didn't hurt himself at all, at least I don't think so!  He went out for a walk around and we saw 3 of our neighbours which he enjoyed.

Tomorrow is a psychology session so I will be interested to see how Pete answers her questions on how he is feeling and how things are going.

Short Tempered

I have noticed recently that Pete seems particularly short tempered.  If I don't understand what he is trying to say quite quickly then he gets angry.  He doesn't seem to get that it is as hard for me to guess the subject as it is for him to indicate it.  I just can't get him to stop waving his arm around in a general direction - he thinks I should know immediately what he wants!  I usually then ask if he wants me to get something or do something and then offer different rooms, by which time he has lost it and cant, or won't, answer properly.  Frustrating to say the least!   By the end of each day I am so tired mentally.  I absolutely know it is so hard for him and can't imagine how he feels, but he cannot accept how I feel.

I tried to chase up an appointment for Pete in the Urology Department last Thursday, only to find that he hadn't actually been referred!  Why is everything such a fight?  Anyway, the secretary was very nice and when I said the GP had had a letter from Plymouth saying he was being referred back to Barnstaple, she said she would contact the surgery and see if she could get a copy of the letter and they could, hopefully, use that as the referral.  So, yet again, it is a case of wait and see what happens.  I will ring them again this week as we need to get this sorted with a view to getting the problem resolved and the catheter removed.

After the debacle in the Haematology Department a few weeks ago I wrote a letter of complaint to the Health Care Trust.  They rang me and said it sounded extreme regular waiting times and would investigate.  Yesterday they wrote with the results of their investigation - basically they said the meetings are scheduled into appointments, but they can never exactly guess how long they would last or how long the consultations would last.  So no satisfaction there then.  I can write to the Ombudsman apparently but it isn't worth it.  I don't think I have the energy for another fight!!  (I have to ring BT to sort out our Broadband which is now very weak, can only be used in one room, but I just haven't got the inspiration to do it!!  Every time we get the bill I think I must do something as we are paying for a very inferior service at the moment, but it always seems to be 'I will do it tomorrow' and, as we all known tomorrow never comes!!!) 

I went out last night - after a dodgy start!  Pete started complaining loudly of pain - much moaning and groaning - about an hour before I was due to go, so rang to cancel, but then Pete got upset and said to go, so I did!!!  As usual, it is so nice just to get away from the situation for a couple of hours.  We all had a nice chat, nice meal and some laughs - and a general good gossip.  I have worked out that each week I have a total of 5 hours away from home - two trips to town, each lasting from 1 to 2 hours (no more) and 1 hour driving lesson, so I do need these evenings, even just once every couple of months!