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.

Email

Inow have access to email from my hospital bed, whichis good. (I make no promises as to how often I will read or reply.)

Note that I don't have my address book, so I cannot initiate an exchange of emails.

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.

Chemo

I got To Christie Hospital for my 09:30am appointment. We saw Dr Lorrigan at 10am. We had a more frank discussion than Wednesday. Basically, I am in a war with this cancer and the final result may not be postive.

So treatment set for 12:30pm. Come 12:30 and the medicine was not ready. Apparently the cocktail of drugs which make up the chemo are prepared off site, in Burnage. My intravenous bag had not been delivered. I was not alone. Most of the people there were due to start their treatment at 9:30am and were still waiting.

Anyway, my chemo bag appeared 4pm, by which time most everyone else had also go theirs. First was a talk about precautions for Chemo. E.g.:

• no salads (can't be sure is it is fully clean - cooked foods only);
• full cream milk not skimmed, to counter the tendency to lose weight;
• keep a digital thermometer to hand and check temperature at slightest sign of fever then immediately contact hospital if in excess of 37.5C.

We also discussed support mechanisms, so they have refered me to the Distric Nurse. They said they are best for medical and pain relief advice, whereas MacMillan is more geared to benefits advice, which is important to some but not my main concern.

Then I went on the drip. I could feel it stinging as it went in, so they slowed the drip to reduce the pain. That meant a 2 hour session rather the the hoped for half an hour. (Most chemo drips are painless as they go in, but some people react to this particular one.) That was fun. There was a dozen of us patients, plus hangers on. I was the youngest and we were all facing our personal battles.

We finished the day at Christie with a free NHS meal, for all four of us.

Visit from Jim

Jim dropped round after a long day in the Heritage Centre, which was very good of him. He brought me up to date on Heritage and Stockport news. This included an attempted break-in at the Heritage Centre. Fortunately for the Trust, the intruders gave up when the saw the size of the drop from the roof to the Centre's floor. However, they have damaged the fabric of the church and the church will have to make a claim on insurance.

Discussion with GP

Friday afternoon, I got frightened by one of my bumps. I was worried it was infected and might lead to problems in addition to the cancer itself. My dicoveries always seem to occur on a Friday evening, to give me maximum time to worry before surgery is open again.

But as it was afternoon I was in time for an emergency appointment that afternoon. In fact, it was nothing to worry about, or nothing new. It is one of the melanoma tumours becoming visible beneath the skin.

However, it was a useful meeting in terms getting support from my local GP. We discussed regular consultations and providing practical support. Also the need for Lan to have consultations to discuss her stress.

Visit by Graham

Graham was a very welcome visitor. There was a lot to bring him up to date on. I had spent the morning adding some items to the blog, decided I'd had enough of that, when Graham arrived to my surprise. Lan had made the arrangements in secret.

Visitors are welcome. It's a fairly full house what with me, Lan and my parents. Give us a ring first.

For gamers, Graham and I talked about a a Games day here, probably a Sunday. I'll see how the chemo affects me before setting a definite date, but I guess 21st or 28th Jan are likely to be the best dates for me.

Sorry for the embarrassing photo Graham. Lan did take a lot, but this is the least worst in terms of someone pulling a funny face.

Hospital visit

It's a fortnight since my last appointment with Dr Lorrigan, during which time I have been watching the bumps and get bigger and spread.

It was the usual procedure, a half hour wait in the waiting room then Lan and I were shown to a room and we were left there for half an hour before the Dr and his assistance finally came. Next door there was a lot of activity with 10 staff coming and going. My parents thought all this attention was for us.

When the Dr finally did come, Lan was so upset by what she might hear, Lan left and my mum came in. (It was only later did I learn that mum thought I had. been briefed for the last half hour and the information was being repeated for her benefit only.)

Dr Lorrigan now says I cannot go on the trial after all. Having been treated for a previous cancer (radiology for testicular cancer in 1998) automatically excludes me.

So my treatment starts on Monday. This is the BOG standard treatment or gold standard treatment as Dr Lorrigan called it. I had read-up on this for
the trial, except that it is not the same after all. The trial used a more friendly, oral version of temosolide.


[I will complete this posting after a bit more thought.]

Not much help line

I was right. I only got a response from the Christie line on Tuesday and the secretary couldn't offer much, except to cancel my appointment if I wanted. Which I definitely did not want.