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.