Out of breath

Yesterday, I had a bit of concern about the timing the move home: was I really fit enough; were the rest of the family ready for me in the absence of my parents? The appeal of my better supported and motorised bed won out against the expert (but often very slow medical expertise.)

An ambulance arrived midday, but when they saw the state of me (unable to bend and short of breadth despite wearing an oxygen mask), they decided it was a 4-person job. They had got away with a 2-person delivery because it was an emergency. I had to wait until 2 teams became available simultaneously. I was lucky and this took just over an hour.

After a lot of debate a strategy for getting me from ambulance to home was agreed. So I took a draft of pain killer and the staff slid me from bed to stretcher. I found I physically could not breathe for this transfer, so I had to hold my breath for probably less than 2 secs. In my weakened state, even with oxygen, I found myself gasping for air. Each breath seemed inadequate to replenish my breath. So I felt certain I would asphyxiate, caused by lack of breath capacity and my lungs giving out.

The team were very solicitous, trying out various stretcher positions, while I became increasingly convinced I would die even if returned to my bed. The doctor was called, nurses wandered in and out making posture suggestions, blood pressure was measured. I snatched answers to questions with breadth I thought I could not spare. The only medical action was to give me a slightly bigger oxygen mask.

I signaled the obvious, that I had given up on the move. So I was transferred back, with me expecting the move could be my last. I made it still gasping, but convinced my lung muscles couldn't last. After a while I began to think I might make It and began to stop trying to take the largest breath possible with each breath. So gasped, but more calmly. this is the position my parents found me, having been rung by my wife. I slowly, very very slowly, began to talk between breathes and conditions slowly returned to normal. My breathes remain shallow.


Late last night, I knew I had problems with my catheter. While it had passed some water, it was becoming increasingly painful to drink more. My bladder was under pressure and couldn't relieve it. I kept being assured I would be the next case, but having taken some pain-killer, it was clear that they hoped it would keep me quiet.
Having complained again about the excruciating pain, I finally got attention and a new catheter. Urine flooded out my bladder, easing pressure on my stomach, including my lungs. Suddenly my breathe capacity increased!

With my catheter fixed could probably have made it home with little problem!

Do I go home now? I don't know what the medics would say to this suggestion. Logically, I think I should stay in. It is risky, even if a large part is due to my over-reaction. I hope that my breathe will improve due to anti-water retention tablets and lowered infection. So I am resigning myself to a boring waiting game.

Delay

The pharmists wenthome by 7pm, leaving a vague message about a porter. Without firm information, they wouldn't make arrangements about late night transport. Medicines appeared 9.45pm. So another night listening to fellow patients snore and expectorate. All the patients have got stuck here longer than they expected.

Back home today?

It is likely I will be home again today. First, more anti-biotics, a blood transfusion to receive and prescription to sort out.

Back in Stepping Hill

I am back in hospital.

I could tell you a number stories of why it was thought necessary or the anxious waits while we wondered if I had been forgotten about. To be selective, over the weekend the District Nurses were concerned about the amount of swelling around groin.

Come Monday, my GP was not responding quickly, so the nurse called an emergency GP. In reviewing my case, the GP found several areas of concern, so I was referred to Stepping Hill. From being referred, it was an 8 hour wait for a bed, much of this time we were uncertain whether anyone was dealing with us.

In summary:
Thu, 15th - comfortable, enjoying the hospital type bed;
Fri, 16th - some discomfort from swelling in groin;
Sat, 17th - District Nurse concerned about swelling;
Sun 18th - increasing concerns;
Mon 19th - local practice suggests phone consultation for Tuesday. District Nurse gets on the case and insists on home consultation today. This led to me being admitted on 22:00. Blood tests and X-rays done overnight.
Tue 20th - some changes in medicine. Catheter drained my bladder.

Early days, but staff are talking about me leaving on Friday. A lot of it depends on getting balances right, it will also depends on my attitude to being in: prompt medical attention vs. better bed and home comforts.

Hospital again?

It was decided in discussion, with the nurse, that I may be suffering from water retention. The symptoms are not fully clear, so the District Nurse contacted the emergency GP (my usual GP being on leave).

The GP reviewed my case and decided that there were a few other items of higher priority that ought to be dealt with first, in priority order:

the high potassium levels - (this occurred only once, but would be particularly big problem if it returned and;
• 2nd item - (I've forgotten what it is); and finally,
• the original worry of blocked pipes.

So the plan is to get me into hospital so a series of tests can be done so I can be treated appropriately.

Pain largely under control

Comfort seems to be coming together. I have a hospital style of bed, which allows me to adjust to comfortale postions or ease me out of ed. The mattress is the ripple type. Which means it is constantly adjusting slightly to prevent pressure sores. It was a bit odd to start with, but now I like it.

Perhaps most fun of all, is that it is possible to place the laptop in a reasonably comfortably position. So emails and and blogging are practical again.

I am not getting out much. I had a trip to the hospital on Monday. On Tuesday we went out for a drive, to see how much fun that would be. It was a scenic drive to a car park the The Romper. To be honest, the fun of the drive, just about compensated for the being shaken around in a car.

I still look forward to visiting Underground Stockport exhibition (perhaps waiting for the final phase of Stockport Story to open as well.

I am in for visitors, though I am well booked-up at them moment. Call me or Lan if you want to come over. I think 3 March is my first available date.

Paul is in Vietnam at the moment. I think I feels a bit guilty to not be here adding suport but Lan and I made it quite clear to him that he should go. Paul phones every day and it gives Lan a great boost to hear the daily updates. Today is Tet (VN New Year) and Paul was interviewd for TV, because he was one of the first people to take a Ha Long Bay ride this Lunar Year. I also enjoy Paul's calls. It makes me think how excellent it would be if I could take a fews hours out of convalescing and install myself at a bar in Saigon, or any number of VN locations.

It is now someweeks since I had chemo. If I had insisted, I could have had chemo last Monday. But I now have more respect for the treatment. I don't want a blast of Chemo if all it means is another 2 weeks in hospital. Of course, no one knows if I would suffer as much the second time around, but we have agreed I need a couple of weeks recuperation before further chemo is sensible.

Back at home

I have been home since February 07. I haven't managed to make or take the time the time to post until now. I appreciate that my silence will have been frustrating for readers, as it has been for me.

I will post some more soon, once I have read your emails, assuming I don't get too weary again.

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In the end it was decided for me to go home. There were some risks. The infection (cellulitus) wasn't beaten yet and blood clots remain a risk. On the other hand I am avoiding a whole host of possible hospital infections and the tedium of the hospital.


My hospital 'room' was described by one nurse as a cupboard, but at least it gave me some privacy. I don't know what most of the patients on my ward were there for and to what extent it was there medication which was to blame, but it was a noisy and disturbed wing. The ward door was kept locked to stop patients escaping. This didn't stop them trying every hour or so. Poor chaps were bed blocked. Neither Council nor family could provide them with housing in time, so they were practically imprissoned, with no one to appeal to.

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On the otherhand hospital could be relatively tranquil and organised compared to home. So I hesitate to invite visitors. Can I suggest you talk to Lan and my parents. If I am fit at the time, then I will join in.

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I am going to look at the Stockporrt Heritage blog now. To be honest, it is more fun.

Out tonight

I am currentl waiting for my prescription, but once that is done am off home.

Several people have expressed a wish to see me. I welcome seeing them, but give me and my family a chance to get organised. So leave it until after this weekend. (Gitta, Leslie helen, you remain welcome. If I am not strong enough then I will keep out of the way.

Out even later

We haven't had the results of my blood tests yet, but the docotor would like to see some good stable results, today and tomorrow, before releasing me. I am not clear whether it is blood thickness which is most important or signs that my infection is under control. Anyway both have to be satisfactory. If I have two days of good results by tomorrow, I might be out.

I was in a lot of pain ths morning. I think it was because the pain killer came an hour later than usual. t might also be because Dr Leo suggested that I stop using the moisturiser on the wound (as it seems to have softened the skin to such a point that it is leaking). As the wound dries out again, it may be contracting and causing pain. I feel all right now. I shall see if the pain returns.

Steve has lent me a book, You can heal your life. I am cynical, but I will give this book a read.

Lan continues to suffer. A GP visited and diagnosed vertigo. I thought this related only to heights, but Google search tells me that there are a number of conditions and infections, related to blockages of the middle ear which lead to dizziness. I haven't tied the description of Lan's consultation to any of the specific googled diagnoses, but I am heartened that GP seems to have a specific diagnosis in mind, not just an unspecified infection.

Ever since I have known Lan, she has occasionally complained of dizziness due to: running; walking up hill; to much excercise or worry. Usually something too minor to worry about. Maybe this is a clue to something longstanding and maybe it will improve Lan's general spirit of well-being.

Dad had his eye-site tested yesterday, back in Good Hope hospital, Sutton Coldield. They have given him an appointment for laser treatment next month. As well as being grateful that his poor eyesite will be improved, we hope that he will once more be able to drive. This will take the pressure off Mum.

Out whenever

The vitamin K has done the trick and got my blood thickened to about the right strength. As Tom observed recently, the 'correct' thickness is a very fine range.

I am not fit enough to leave the hospital, however. The main area of concern is the failure to rein in the infection. I am now on my third anti-biotic after 11 days. The hope remains to get me out soon, but I am hostage to the infection of cellulitus.

I fell a bit like a balloon, with hands and feet puffed up, but am in very little pain or discomfort. I just have to put up with the tedium of hospital life.

Out tomorrow?

I am not out today. My blood is even thinner, despite the fact the haven't given me warfarin for 3 days. So they are going to give me Vitamin K, intraveneously, otherwise I could be waiting a long time before my blood thickens to safe levels.

They are also starting me on a new antibotic, in tablet form. Visually it looks like the inflamation is under control or perhaps declining, but blood tests show an increased level of inflamation markers suggesting the infection is far from beaten. The doctor says he prefers to treat the patient rather than the blood tests, but the indicators are strong.

At home, the occupational therapest has delivered useful items such as a bath stool and an adjustable bed table to make life easier.

I hear Jim has fixed our door lock which was getting unreliable and we continue to get cards and messages from friends. Thanks a lot, it is very comforting to have all this support.

Out today?

Talking to the nurses, it seems likely that I will be released today, though the Doctors won't meet until this afternoon to make the decision. If it doesn't happen, it will probably be due to concern over the thiness of my blood. A few days ago the worry was too many coagulents risking another blood clot. I seem to have responded too well to the medicine so that I might bleed too quickly.

nyway, I should hear the decision this afternoon, then predict delays while they prescribe the controlled drugs to take home with me. I am still taking a largeamount of morphine derived pain killer.

Meanwhile, poor Lan, who has been worrying about me and scrubbing the house to achieve a sterile environment for me to return to as well as being hostess to my parents and brother, has worn herself out and is suffering from a sore throat.

Friday update

The results of the angiogram are that I did have a blood clot near the lungs when I was admitted. It is likely that this was at least one of the causes of my shortness of breath which led to us calling the emergency services.

That led on to the discovery that I had an infection. The infection might also have contributed to my shortness of breath and general level of sickness when admitted. There seems little doubt that the infection was the cause of my pain in the leg and lack of mobility, so it was a timely discovery.

The angiogram also showed up cancerous bit in the blood near the lungs. Mum is insistant that we were previously told that the cancer had been detected round here so it shouln't be veiwed as a further spread.

I am no longer hooked up to tubes, but the plan is that I stay in hospital until Monday. This will give them more time to confirm that the infection is under control & adjust my blood density to make the re-appearance of clots less likely. My next chemo will be delayed by a week, until a week on Monday. This is to give my body a chance to recover.

Angiogram

It's a pulmonary angiogram by the CT Unit which I am having, rather than a CT scan.

[Correction: after a bit of Googling, I have concluded that a pulmonary angiogram is one of a number of tests that can be done on a CT scanner. http://www.muschealth.com/gs/TandP.aspx?PageID=P07966 ]

I think this is to test if I have a blood clot. This was identified as a possible reason for my shortness of breath when I was admitted. If so, it has taken a while to arrange. I have been able to take deep breaths, without discomfort, since Sunday.

Of course, if there is a clot, it is important that it identified as clots can move and cause more serious blockages. T nurse pointed out that the doctors may want to know what effect the wound & cancerous bumps are having on circulation.

Having to starve prior to the test presents problems due to my diabetes. I am now managing my insulin, which is an improvement as the nurses are too busy to reliably coordinate the injections with meals. That's fine until they say I can't eat for 10 hours then concede a few hours later that I can have a light lunch.

Scanning

A CT scan is planned for Wednesday. I think the main purpose will be to see the status of the infection. I am in hospital so they can blast the infection. Once that is done, they want to chuck me out as soon as possible, because hospitals are a great place to pick up new infections.

Whereas yesterday I was reconciling myself to being here for another week, it sounds like the hope is I will be out on Thurs or Fri.

Still Stepping Hill

I am still in Stepping Hill Hospital.

The area of the infection, as implied by the patch of reddened skin round the wound, seems to have stopped increasing. I continue to be fed anti-biotics intavenously, to eradicate the infection. Then chemo can continue. If it can be beaten quickly, then I may still be able to have my second chemo cocktail on Monday, as originally scheduled.

'Patientline' gives me limited Internet access, so I can update the blog. It depends on how weary I am & how restricted my arms are with tubes.

Annoyingly, I can't access Flickr, to view friend's photos, because the content is potentially too adult.

I will see about accessing my email this afternoon, if my parents can find my notes on NTL passwords.

I'll post a comment to the blog when I get onto email.

Courtesy of Patient Line

The blog is out of date,so i will jot some quick notes before returning to something more passive.

SAT: awful nights sleep due to pain.

SUN: a fine day out. My brother drove me and my parents ,to Castleton and Buxton, to enjoy the views. We then got out of the car for a coffee at the Palace Hotel. A remarkably untiring, unstressful and pleasant day out.
An awful nights sleep due to pain.

MON: slept downstairs. V comfortable. Concluded pain set off by climbing stairs.

TUE: repeat the success. Little mobility about the house, but lifestyle quite bearable.

WED: meet Macmillans nurse. Good discussion. Initiate steps for improved & focused pain control.

THU: 00:30 - agony. Eventually find bearable position.
04:30 - still in pain and short of breath. Start thinking that it may not be muscular and start worrying about cardiac possibilities and ask my parents to call an ambulance.


CONCLUSION: I am in Stepping Hill Hospital (my local hospital). We are fighting an infection around my wound area using anti-biotics applied intravenously. This will keep me in hospital until Mon/Tues at least. It may delay my next Chemo, until I am up to strength.
I am on ward B4, in my little room to reduce contact with others to reduce risk of further infections.

If you want to visit, please contact Lan/my parents first. Waiting times are restrictive and there is not enough space for all family to visit.

District Nurse

I had a visit from the District Nurse who has put me on her books and made me aware of the local Beechwood Care centre as well as other services.

Tuesday-Wednesday

The first two days after treatment are said to be the worst, but I actually felt better than usual. I was quite perky. So that was nice.

Kevin dropped by on Tuesday and we had a good chat.

Wednesday morning, the water was cut-off. It turned out the water meter we requested was finally being installed. We requested one a long time ago and after a long delay, they made an appointment to install it in pavement outside. No one turned up on the day. When I complained, they said their records showed the contractors had installed it. So I did nothing more until a while later when the billing department rang to say they couldn't find our water meter. That was some months ago. Anyway we finally have one. That should significantly reduce our water bill.

Later Jim popped round to fix our door bell. There has been a spate of vandalism on door bells on our road. Lan wanted it replacing securely and I am not up to it. So Jim very kindly came to the rescue.

I felt very chipper these two days - the days which are expected to be the worst - then to stop me being cocky I was struck by an accute pain. The unpredictability is annoying.

GP

Saw GP and had a useful chat about pain killers and support services.