Dealing with pain

Having seen me be in agony all of Monday, my parents decided they had to do something, at 7pm, half an hour before they were due to go home. So they contacted NHS direct who asked a lot of unnecessary diagnostic questions. Having established it was not trivial, it was on to Phase II, waiting for a call for the nurse. I was in luck, while the target is 4 hours, the nurse got back to me 40 minutes later. More diagnostic questions and then she told me to wait up to an hour for a GP to call me. A GP eventually called and gave me an appointement for later that evening at the Stockport Doctor Cooperative.

So mum and Lan took me to the doctors. I think they were worried I was a druggy trying to con them out of a fix. I convinced them I was legit and the doctor decided I could signficantly increase my dosage and gave me prescription for liquid OxyNorm. Since then, the drugs and keeping very still has kept me fairly comfortable, though not always lucid.

Lan, who is getting increasingly frustrated by the delays, to the opportunity to tell the doctor how I should be able to get dealt with more quickly with BUPA. I am not sure Lan's arguments went down well the co-op doctor.

Plotting the growth

Afficianados of my websites of yore, may have wondered who long it would take me to graphically represent the problem.

I have been plotting it for some time, but have only just got round to posting it.

The graph shows the measured length and width of the lump. The first two measurements are by the GP and the consultant, the rest are by Lan. Lan doesn't believe in spurious accuracy, so she has measured roundly to the centimetre. I think that's why the lump appears to shring sometimes. However, the lump does sometimes feel larger and more intrusive (it looks like a shelf trying to grow from my hip).

The X-axis starts on the day when I found the lump (it didn't hurt at first, until I had poked it a few times to work out how big it was) and ends on the day I should be having surgery to remove it, 7 November.

I am annoyed, I learnt on Saturday, they have booked me into NHS not private, because they are not sure if Mr Murphy does private work. I wish they had told me four or five weeks ago when there were delays waitin for Mr Murphy. I would have perceviered with finding a different BUPA surgeon if I had known.

So I have told them to try and get Mr Murphy's permission to go private. I won't get treated any sooner, but I have been paying in the insurance for some years now. I want the luxury of a room to myself and other comforts.

sleep and books

I had a better sleep than usual, sleeping through until 6am. Not taking the painkillers seemed to help, though this was only possible because my leg was relatively pain free last night. It seems to be biting back this afternoon.

I have finished a couple of books, you can look at my book crossinng journals to learn more:
The Year of the Hare: America in Vietnam, January 25, 1963-February 15, 1964; and
Galapagos.

The parents are coming for the weekend, to help entertain me, which is nice of them.

Lazy day

I didn't go out after all. I spent the morning catching up on sleep lost overnight.

Keep trying

I had an attempt at pushing things forward. I rang up the surgeon to tell him about my near diabetic hypo last night. The lack of sleep (I have been having disturbed sleep for 2 months now) caught up with at 9.30pm and I just wanted to crash out. Fortunately, Lan got me to take blood sugar test first and I was very low. I found it quite a struggle to stay awake long enough to take some food. So it was rather worrying.

So I told the surgeon all about this, but he assured there was no way he could move me forward, but least he now definitely knows I am diabetic and he tells me I will be the first on the day.

In fact this happened two nights ago, so I have been kicking myself for not mentioning it at the consultation. So by ringing him up, I have stopped being angry with myself for not bringing it up.

I have twelve days to go, so I have made a decision to try and use the time positively, rather than just sitting in front of the TV or PC, trying to find the most comfortable position. So I initiated this resolution by going to Morrisons supermarket with Lan. Which I think shows dedication because I hate Supermarket shopping at the best of times. I ended up spending most of the time sitting at the old codgers bench at the check out, with all the other stick carrying, infirm men.

This shows just part of the
original Manchester Museum building.

Then in the afternoon we went to the Manchester Museum at the University of Manchester. I have never been there before. It was bigger and better than I expected and Lan enjoyed it too.

We are out again tomorrow, for a cremation. Our neighbour died of cancer. She was well into her 70s, if not 80s and been smoking all her life. She had just about got her garden and house into the way she wanted it. She was always very friendly and thought our garden was amazing. She was often inviting people into her back garden to view our garden. She was also the best source of all the local gossip.

By way of light relief

[My thanks to Graham for introducing me to Google Videos. ]

Date for surgery

I saw the surgeon, Mr Murphy this morning. He has decided to remove the lymph node (or nodes, I am not sure) at the top of the leg, but leave the nodes on the inside as they are unlikely to be affected.

He does surgery on Tuesdays, but he is fully booked next week, so my operation is on Tuesday 7 November. I will go in the day before. How long I have to stay in will depend on how long they take to drain. I may come out quickly or I may be in for as long as a week.

Stockport introduces Vietnamese business practices

I have just attended a meeting organised by Stockport Homes, the arms-length from Council but owned by council company responsible for managing residential council property. We were invited because the property we rent out is on a council estate.

What amused me was that all attendees where given £5. It reminded me of Vietnam were it is standard practice to pay staff to attend meetings. We had to do it to get the Vietnamese government officials to attend. It's the first time I've been paid to attend a meeting.

You may suggest that I should have refused it as the other attendees were more cash strapped than I, but it is coming out of our service charge (£1,400 was paid out to attendees last year) and they are asking for more than £500 from us to pay to paint a stairwell we don't have access to.

Stockport Homes seem to have problems with quality control of work done by contractors. Amazingly, they have only one contractor, who is another Council company. Having established that the meeting had little confidence in Stockport Homes' ability to manage small grass-cutting contracts, the Stockport Homes representatives were very slow to understand why residents should then be concerned about their management of a new £40m fund for environmental improvements. (Comments such as, "It is completely different" and "It's a much bigger fund" were not reassuring.

Actually this posting was just supposed to be about my amazement at being paid an attendence allowance. I've wittered on again. Be thankful you don't work with me and have to read my meeting notes.

Time line

25 August - I found the lump and discussed it with NHS.
31 August - Saw GP, who favoured inflamed lymph nodes due to infection, but wrote to Christies. just in case.
7 September - Saw GP. Lump not responsive to anti-biotics so the favoured diagnosis became a hernia. But he said he chase up the letter to Christies.
15 September - Dr Leahy diagnosed a seminoma. He decided to dispense with a biopsy as he was so confident.
20 September - Hearing test, so we know much it deterioates as a result of Chemo.
28 September - CT scan (a biopsy is usually done at the same time).
2 October - checked in to Christies Hospital, expecting Chemo to start. Instead, all that was done was a Kidnet test, to check it is working well enough to suffer the rigours of Chemo. Then Dr Leahy told me the CT Scan suggested it was not a seminoma. He had overlooked the fact I had had skin cancer when he diagnosed me. 3 3 October - biopsy
13 October - Dr Leahy told me it was a melanoma (from the skin cancer).
19 October - I am going to talk to my GP about delays and pain killers.
25 October - see surgeon to discuss next steps.

Throwing myself on the hospital's mercy

To try and psh things along, I have just faxed the hospital. Rather than tell them of my annoyance, I have told them how worried I am about the consequence of further delays. On Friday, it will be 8 weeks since I discovered the lump. I have also given them a bit of a sob story about lack of sleep, which is no less than the truth.

Not impressed

The surgeon's secretary has given me an appointment for 25 October, a week on Wednesday. That will be exactly two months after I discovered the lump and marks two months of disturbed sleeping.

I have contacted BUPA and they have given me some numbers to call if I want to switch hospital, but then who knows what delays that might bring as they review my case.

So I am seeing my GP on Thursday (the earliest he could see me) to see if he will give advice on the way forward. I could do with assurance about how time critical this all is.

I could also do with some tablets which work. The latest are supposed to act directly on the brain, rather like alcohol and make one drowsy as well. They make me drowsy but they also prevent me from sleeping properly, just like alcohol.

The pain is not major, but it's enough to discourage all excercise except for a slow walk. Work seems to be the best distraction to the pain, but it's becoming a challenge to stay awake.

Thanks allowing me for this moan.

A new way forward

This morning the Doctor explained the results of the biopsy. Under the microscope, the small specimen looked like a melanoma rather than a seminoma. Both are quite distinctive, so that is probably a sound diagnosis. They tried to confirm it with a dye test, but it didn't show anything.

[Seminoma is testicular cancer, while melanoma is skin cancer.]

So I have a lump which is probably a secondary from the melanoma I had removed from the base of my spine in 2001. Melanoma doesn't respond well to chemotherapy, so the first action is to cut it out. The surgeon is on holiday this week, but his secretary reckons I will probably be able to see him on Wednesday morning. Then, if he agrees with the doctors diagnosis, he will arrange to cut it out.

The doctor said that the tumour is well-defined, hopefully it hasn't spread other tumours and hopefully I am not going to have further problems in the future. The tumour is in a lymph node, which filters the blood. That presumably is why the tumour is lodged there. My hope is that it did a good job of picking all tumours produced.

Summary

Downside

• It means an operation, that worries me more than chemo;
• there is a possibility of more melanomas in the future;
• a bit more waiting; and
• for a long time, I have wondered what I looked like with a Yul Brynner/Andrew Richards look.

Upside

• No chemo - which could be life-threatening if I picked up an infection;
• I can abandon my 4-week self-imposed abstinence, which Lan had sensibly suggested to protect my kidney before the ravages of chemo. I just have to decide whether I prefer beer or painkillers.

The wisdom of Kylie Minogue

I am not a great Kylie Minogue fan, but this evening I caught part of an interview about how she coped with cancer and chemotherapy. She said the worst part was waiting for the diagnosis - the waiting for tests and waiting for doctors. I concur with that.

As I cast my mind back, it is not as bad as eight years ago. My recollection is of seeing the consultant, who would look through my papers and would say something like, "We need to get you a Scan." So I then had to wait for an appointment for a scan, followed by another wait for an appointment to see the Consultant again. The Consultant who would get out the Scan results and study them for the first time and say we need another test, or you need Radiography. Then I would have to go home again and wait for the next appointment. The Consultant could have looked at the tests beforehand so that when I saw him he could have said, you need Radiography which has been booked. It was probably partly a function of how the waiting time targets worked.

Anyway, that's my moan for the day. Tomorrow I hope to learn where we are. THis morning I got a letter confirming my appointment, but it implied that the treatment is imminent. So I starting to think that maybe the Chemo will start next week.

Consultation

A week after the biopsy, I chased up the Dr Leahy, the consultant at Christies Hospital, with a phone call. His secretary got back to me with the message that he got the preliminary report yesterday. He would like to discuss it with another doctor but he is on leave this week. So I have an appointment to see Dr Leahy on Friday morning.

This sounds like this is not a simple case of confirming the original diagnosis. lan takes this as good news, that it probably means something less important. I am not so optimistic. There is obviously something he wants to take advice from someone else, but he doesn't feel able to defer talking to me till next week. To me it suggests there is bad news to be discussed.

Working while waiting

I have been back at work since Wednesday and expect to be working Monday and Tuesday this week as well. I hope by then, a diagnosis will be derived from the biopsy and I will know where I stand.

It is probably not sensible, but having an operation, even as an outpatient, worries me more than Chemo.

Being back at work has been a bit tiring. Driving to work aggravates the pain in the leg and my poor co-workers are uncomfortable watching me hobble around. I think its those who know about the testicular cancer because, despite me telling them that the lump is much higher up, almost on my hip, these guys are imagining having a tumour on the testicle. (There was nothing painful about that, 8 years ago, until they operated. I could have gone some time not worrying about it, had Lan not insisted - thank goodness.]

What I have found is that the pain is less at work than at home, I assume because work takes my mind off it. So I was worrying about this weekend. In fact it was no problem and I even pottered around the market, to see the Cultural Jamboree on Saturday. On Sunday friends took us out to the Thai Buffet at the Pacific, Manchester Chinatown. Later I took a slow stroll across the antique bridge, to be demolished tomorrow and through the new Mersey Vale Nature Park. So far, all that is new about the nature park is the rather absurd Seeds of Change statue.

So may be it is stress related. But that is rather odd, for I am getting very little stress at work. Having handed all my work over to others and not being sure I will be around for long, I just have bits and pieces to do and can almost choose my tasks.

Waiting

I had the biopsy this morning. Now I must wait a week to find out if the chemo is to go ahead, as planned. Or whether some other treatment is required.

If you want the full story, Lan and I returned to my room in the hospital at 06:45, a bit earlier than we were aiming for due to the lack of traffic. We were told the earliest anything that would happen would be 8am so to be there by 07:30. We watched a DVD I had brought then fell asleep.

The nurse came in at 08:45. She thought we had been there all night and that Lan has slept on the chair. She was ever so sorry for Lan. Anyway, they said they hoped the surgeon would be with me within the hour. It was in fact 10:15.

He took a couple of samples of the lump with a needle. He had difficulty getting much of a sample, which possibly suggests it is more likely to be a seminoma or from the skin cancer I had in 2001. So we checked out the hospital and I am back in the office tomorrow.

Diagnosis in doubt

After eight hours in the hospital, doing very little except for four blood tests, we now know less than we thought we did.

When the doctor eventually saw me at 4pm, it was to say that Thursday's CT Scan revealed a lump which didn't look like a a typical tumour. He was originally so confident with the diagnosis, he hadn't asked for a biopsy at the same time as the scan. How he is less sure, so I am having a biopsy tomorrow.

If it's a tumour, then the chemo will commence after all. Or it could be something else, such as an abscess which could be dealt with me as an out-patient.

Lan is feeling exonerated, as she said for some time she didn't believe it was cancer. I am not convinced. I have girded myself up for the ordeal of chemo and am frustrated by the delay and uncertainty. It has been a very tiring day, even if it has just been waiting.

While my proviate bed is still there at the hospital, I have come home for the night, where it is easier to relax.