Time for an update, I think

Still waiting...

The haematologist has now received the imaging and slides from the first hospital, so that he is in possession of all the information available on my condition. After he has discussed same with his radiotherapy colleagues, he may be advising that I have the radiation treatment to the enlarged node in the groin. This might relieve the swelling in the leg. On the other hand, it might not.

He won't be able to discuss this information with his coleagues until 1st or 2nd September at the earliest - hence the wait. And the frustration. While I should be able to go to work whilst undergoing this treatment, I didn't get the impression that skipping a couple of sessions was the way to do it.

Now, there are two things, outside this problem, but affected by it, coming up in the next couple of months which are adding to this sense of frustration.

Firstly, and less importantly, I have been invited to a meeting on the continent in a couple of week's time. I would really like to be able to go, but it will require an overnight stop, so I would be out of the UK for two days. The reason why this may be an issue will become obvious in a short while.

Secondly, and much more importantly, we go to Malta and Umbria for 10 days in October on honeymoon. It's our 25th wedding anniversary, but since our original honeymoon was only 3 nights in a B&B in Dorset, this will have to be a very late proper one. I am not going to miss it.

So, if the treatment last 4 weeks, there is a "window" in September when this could be done. It will mean not being able to go to the meeting, but it will be over and done a couple of weeks before the Malta trip. If it has to be done sooner rather than after we come back from Malta, I want it done now. I don't want to be in the position where I finish this therapy on a Friday and go away the following week.

Hence the frustration - I can't keep nagging this guy.

The leg is the main issue that I have at the moment. It's still much larger than the left leg, and aches in a quiet way most of the time. The swelling in the groin is also aching, and while it's not affecting my movement too much at the moment, I do think that if the treatment works that would be a benefit. I suspect that my mountain walking days are numbered...

10 places to visit - one per year?

In no particular order

1. Drive across the Milau Bridge on a misty morning

2. Walk to Cape Wrath

3. Visit Cape Cod

4. Take the train to Venice

5. Go back to see my Great Grandfather on the Somme

6. Explore the West Coast of Ireland properly

7. See the Northern Lights - Norway?

8. Visit Copenhagen

9. Revisit Berlin

10. Spend a week in a small hotel on the Gironde at harvest time.

I would really like to go into the high Himalayas and see the prayer flags surrounded by mountains. Not very achievable though.

"basically there's f*** all you can do about it"

OK, so the surgeon has advised that if I am to have radiotherapy, it shouldn't be restricted to just the lymph node that is in the groin area, but they should also treat the other diseased nodes elsewhere in my abdomen. Given that there are quite a lot of them (according to the original CT scan), this is a different undertaking altogether.

He did question why the recommendation was for radio rather than chemo therapy, and I just told him what I was told this morning. The chemo might work, but it wouldn't cure anything and it would make me pretty sick while it was doing its stuff. The radio therapy is much more local, and while it does have side effects, they are nothing like the chemo ones.

You just have to trust that these people know what they are doing and get on and do it with/to you.

He is to write to both my GP and my haematologist with his thoughts, and make sure that the images from the CT scan are passed on to the second hospital.

We had a good chat about stuff actually. I told him that despite this being pretty crap news this summer, you just have to get on with life. "Agreed", he said "as basically there's fuck all you can do about it".

Which is pretty honest...

So, now we are back to the waiting game again, pending the receipt of the scan images by the haematologist. September will be here soon...

One meeting down, one to go this afternoon

Not good news, really.

Just a quick update following my meeting with my haematologist this morning.

I spoke with him about the swelling in my right leg and, after an examination, he concluded that there may well be a case for some intervention. One of the lymph nodes in my right groin area is about the size of a quail's egg and could be the cause of the lymph retention in the leg.

He is going to obtain the original imaging from the CT scan I had back in May (see blog posts passim) and then discuss with a radiologist colleague. He is 50/50 with regards to treatment, but I suspect that it won't take much for hi to be tipped 75/25...

The treatment will most likely be radiotherapy, every day, for 4 weeks, and we have pencilled in September as the time when we'll do it. That should clear me of the treatment before the trip to Malta and Umbria. So, let's wait and see (again...).

Bit of a shock though, and there's no guarantee that the treatment will provide the solution to the leg problem.

He has also examined the full results of the bone marrow tests done last month. There is a very small amount of disease in the marrow (that takes me to Stage IV of the disease), but not enough to worry about at this stage. No doubt, further marrow tests will be required going forward, but not just yet.

He did state that there was something else interesting in the results. Lymphoma comes in many forms, but it infects two different types of cells - B cells and T cells. The results from the path tests done on the lymph node removed, shows disease in the B cells. But, the bone marrow shows slight disease in the T cells. Normally, only one type of cell is infected. So, there is a very, very slight possibility that I actually have TWO lymphomas at the same time.

The chances of that happening to someone of my age are so slim that this just can't be the case. Apparently.

So, this afternoon, I now have a visit to the surgeon who originally removed the lymph node. I am seeing him after my GP requested his opinion on what could be done about the leg. Rather than just write back saying that there's not much that can be done normally, he will take another 10 minutes and £350 from BUPA and tell me to my face. I will NOT be bullied into having him do any more surgery on me. If that were to be come necessary I'd go somewhere else.

I think it might be time to get in touch with the Lymphoma Organisation to see what they can do for me. And what I can do for them.

Finally, for now, the haematologist is still talking "10 years". Which isn't good enough really - I want more than that. At least it gives me plenty of time to sort out a Bucket List - first draft of which I may share later. At least I hope it does.

Good meetings and more meetings to come

Had a good week, since my last entry here. Took a couple of rolls of Kodachrome for Stefan’s “Kodachrome Challenge” at the weekend, and posted them off on Monday. Restricting oneself to only taking red and yellow subjects is actually very interesting – I look forward to seeing what returns. It will probably take about three weeks to get back to me. 5 rolls left – I will take them to Paris with me next week.

Finally got round to hanging the last of the new doors off the landing. I have now replaced every door in the house, top to bottom, inside and out. The frame on this last one is so out of square, it’s not true. I will need to put another architrave at the head to prevent the daylight coming right through.

Had a good chat about potential new entry to the digital rangefinder market coming next month with a couple of the guys on Tuesday lunchtime, and a very good meeting in London on Wednesday. Long day though, getting up at 5:30 and back to the house at about ten past nine.

Booked the flights for Ed and Niki to go to Rome. Amazing how a £30 flight can turn into £320 for two, but that’s budget airlines for you. They will be in Italy the same week that we are going to Malta, which will be a bit odd.

Had some news about stuff this week too. I had seen my GP a couple of weeks ago and asked him about the leg situation. He wrote to the surgeon who first looked at me back in May, and I have now got an appointment to see him again on Tuesday next week, the same day that I see both the haematologist and the dentist. A full service, really. What I don’t want to happen is for the surgeon to do what he did last time I saw him for a consultation, which was get me in, under the knife, the next morning. If he needs to do any more cutting, he will have to wait until after next week and I have dragged my bones back from Gay Paree. I don’t think that this is very likely though – he can’t keep cutting bits of my lymph system out.

The haematologist has now had both test results from the bone marrow back, and since he hasn’t called me in for an unscheduled meeting, I am hoping that, for now, we have the all-clear. He did say when he saw me to do the test that if it did come back clear, then he wouldn’t want to see me until October, which is fine by me. I will ask him for a likely timetable of consultations, and whether I will be needing further PET scans, bone marrow tests, or what. I assume that he will need to be testing me regularly, but that’s one thing I’m not sure of.

Weekend looks set fair. There’s a VW car show meeting at one of the Cheshire stately homes sometime this weekend. Might pop over if I have some spare time.

Bone marrow biopsy result

I had an email from my haematologist last night with some results from the bone marrow biopsy. While he is still undertaking immuno-histochemical tests on it, he has stated that "if there is involvement, however, it is minimal and the marrow function is well preserved. All it means is that I may have to follow you up more frequently if the tests are positive."

So that's good news, I suppose and it does mean that we will be able to take a few days off in August after all. We have decided to take the Eurostar for the first time, which will be interesting, and a friend and colleague who lives in Paris has offered to take us to dinner while we are there, which will be great. Looks like a half decent hotel too, which will be a first for Paris. Never had much luck with them in the past - definitely a city where you just have to bite the bullet and put your hand in your pocket if you want to avoid a sweltering box room on busy main road...

Saw my GP today, just to update him, and ask about a secondary symptom that I have - a swollen leg. The thigh, 20cm above the knee is 5cm larger in diameter than the left one. This is due to the fact that the lymph system is knackered, especially in the region where I had the surgery a couple of months ago. A quick bit of research on the web this evening also says that is incurable too, so I'm not having much luck at the moment. My GP is to write to the surgeon on my behalf to see if there's anything that can be done, but it's not looking hopeful on that score. Oh well, there's always the bottle to turn to in times of crisis...

Have worked out that alcohol makes my condition worse. I read recently that, in some people with lymphoma, alcohol can make the lymph nodes and glands painful. This has been the case with me, so it looks like I will have to be even more moderate than I have been in the past :-) Another crutch removed... going to save a fortune!

Good news and bad news and gory details.

Saw the specialist yesterday and he had the results of the PET scan that I had a couple of weeks ago.

As I expected, my disease is at Stage III, as it is also present in my neck and my armpits. I knew this without him having to tell me, as in both areas feel the glands, as if recovering from a dose of the flu. The recommended therapy is still "no treatment" though. Just have to keep waiting. At least I don't have any "B" symptoms as yet - something else to look forward too!

He also did the bone marrow biopsy yesterday. If you've never had one, you just cannot know what it's like. A bit like childbirth, I suppose :-)

I had to lay on the table, with my trousers round my knees and my lower back exposed. Knees are drawn up to the chest in order to stretch the skin and muscles at the base of the spine above the buttocks. The skin is then anaesthetised and a needle inserted so as to mark the route for the biopsy needle. The doctor then takes this needle, which is about 5mm in diameter, hollow, about 100 mm long and with a t-bar handle. Very much like a gimlet, or the tool that cheesemakers use to extract a core of cheese from the middle of a round. With the tool (it's not really a needle...) he then pushes into the flesh, and ultimately into the top of the pelvis. Merely by pushing and twisting very, very hard, he gets the needle through the hard outer bone, and into the softer marrow inside. At least, that's the theory.

And this is where the good news comes in. I have very hard bones. So hard, that he was struggling to get this tool into the bone and through to the marrow. After about 20 minutes, in which time the patient has to keep still, yet push against the force of the tool, (so as to avoid being pushed onto the floor) he managed to extract a core of marrow about 5mm long - just enough to do the biopsy. Although it doesn't hurt as such, it's a very odd feeling having someone try to force his way into your skeleton. I could feel the pressure in my coccyx and even in my toes. It's hard work for both patient and doctor.

As always, the tests on this small piece of marrow ill take a couple of weeks to come through. I am hoping, of course, that the disease hasn't spread into the marrow already (that would take me to Stage IV), but we just have to wait and see, again. If it's clear, the doctor doesn't want to see me again until October. Otherwise, he'll see me straight away and decide what to do about the marrow.

The Leitax mounts arrived yesterday, as predicted, and I fitted them to the 28mm and the 60mm Macro. Although I haven't had much chance to play yet, I am very impressed so far. More at the weekend.

Leitax

Got an email yesterday to advise that the replacement lens mounts to convert my Leica R lenses to Nikon mounts are on their way (from Spain). Likely to arrive next week, I suspect.

While it will be a little daunting to take the back off the Leicas, the website from where they are coming suggests that it's not a difficult job. We'll see. However, I am looking forward to using the R-glass again, especially on a full frame digital.

The correct negative has also been sent to Washington, so maybe we can make some progress with that next week too :-)

Bone marrow

Been a good week this week.

Edward has graduated from Liverpool, and we went to the award ceremony at the Philharmonic yesterday. See the photo on the right. That's Ed with his girlfriend Nicki. He gave me a bottle of Laphroaig as a Father's Day present afterwards, which is very generous and for which I am grateful.

I have heard from my man's P.A. and definitely have an appointment to see him on 14th to discuss the results of the PET scan. I don't know what they are yet, until I see him, but I anticipate that we are in stage 3.

He also wants to do a bone marrow biopsy, apparently, so that will no doubt entail some more prodding and needling... Just leave yourself in their capable hands and do as you are told...

I am going to ask about whether there is anything I should be doing diet-wise, or other-lifestyle-wise. Stop drinking Laphroaig would be a good start, I suspect. :-)

Turns out I sent the wrong negative to the printer in the US who is doing my gift print from the Leica Forum guys. Doh! Have found the correct negative, and will AirMAil it out to him tomorrow.

Also, had an email from the guy that makes the replacement mounts for the Leica lenses so that they fit onto Nikon cameras. He will take 3 days to get them out to me. Not a problem, and encouraging that he felt the need to email me to let me know. Should have them early next week, I suppose. 14th probably.

Results of PET scan, and...

Pencilled in for an appointment next Tuesday at 11:30

Oh, and I bought the D700 today.

Both of which are good :-)

All I need now are the replacement mounts for my lenses and for the hospital NOT to have lost my PET scan information...