Better do an update…

Well, it’s been a fortnight since my last confession, and things are pretty much as they were.

My right leg swells during the day, and I am looking for some socks that have the wide, soft elastic at the top, to prevent the sock-top cutting into my calf, but apart from that, I am OK. Trying to stay positive 🙂
Looking forwards to going on holiday, though…
Had a “Bupa Wellness” medical on Friday, which was interesting. That was the third one I have had in 4 years and, as before, I am fine apart from my blood pressure and cholesterol are too high. So maybe my heart will get me before anything else does. Probably not. The really interesting part is that all the blood tests show that I have the liver and blood of a tea-totaller. How does that happen? No, I don’t know either.
Need to get our act together with regards to film, clothes etc for the trip. I am absolutely NOT going to be buying any over there, what with the Euro heading for parity with the pound again. It’s pretty criminal really – last year we were getting around €1.25 to the pound and a few years ago, it was €1.50. Makes a trip to Eurozone 1/3 more expensive than before. Maybe we need to consider having the One Challenge in Britain again next year – it might be better for everyone!
We will see – I suspect that Venice will be chosen, as many people have already expressed an interest.

Now we are making some progress…

Had an extremely useful meeting with the guy this morning. Turns out he is a Consultant Clinical Oncologist, not a radiologist, but he seems to know what he’s talking about.

We now have a plan…

He advises that only 2 1/2 weeks of treatment every day will be sufficient – they no longer do 4 weeks, as there is no benefit from the additional days’ treatment, and the minimal amount of radiation that you have, the better. Lymphoma also responds well to very low doses of radiation too, which means that the side-effects are also minimised. So, maybe I will get away without the diarrhoea and cistisis (!), but only have the sunburned skin and tiredness. Time will tell, but it doesn’t really matter.

Have arranged to have the treatment when we return from Italy, as there is really too short a time between now and us going away. I will need a further CT scan about 2 weeks before the treatment, so that they can establish exactly where the node is, and where to direct the radiation. They will tattoo the area, so that the point of treatment is consistent everyday. If they do this too early, then the disease may have developed in the meantime and then treatment might not be given to the correct place.

So, it’s another CT scan on 9th October, treatment starting 26th October, running through to 11th November. It means that I might be limping around a bit when in Malta and Italy, but at least I won’t be knackered and with the runs 🙂

I’m happy with that, and in a more positive mood now that “something is being done”.

Had a great walk up to Nine Standards yesterday – it’s a bit tiring walking for 4 hours with the equivalent of about 6 pints of water strapped to your leg, but the views were worth it. This week’s photo shows the Standards in all their glory – a place well worth a visit.

Appointment confirmed

9:30 Monday morning

Yesterday I collected a couple of earlier reports and a CD of the PET scan that was done a couple of months ago. I had a look at the scan images this lunchtime – there are incredible, and it’s really fascinating to look through your entire body, slice by slice.

Going to be a decent looking weekend this week, so I think it’s time to take the cameras out for a run. Going to Alsager near Crewe tomorrow to support the Lymphoma stall at a charity market. It’s Lymphoma Awareness Week next week, so please be “aware” 🙂 And drop a quid in a box if you see someone collecting.

http://www.lymphomas.org.uk/news/news.asp?newsid=70

Finally….

Had a call from the radiologist yesterday morning, advising me that he will give me an appointment on Monday morning, next week. Couldn’t tell me at what time… but someone would be in touch to let me know.

Well, no one has been in touch, so I phoned the hospital again this morning. Progress! The now know of me, but still can’t tell me what time on Monday.

“We are going to write to you with an appointment”

“But, it’s Thursday already. The letter will never get to me”

“Well, you’ll have to phone tomorrow afternoon then”

Very helpful

I explained that some of us have other things that we need to organise in our lives, and can’t be hanging around all morning waiting for appointments, but that didn’t go down too well. It’s as if they think that patients are just sitting around with nothing else to do

So, Monday, sometime, will tell what’s next. One thing that is for sure is that we are no longer going to be able to fit this in before mid October.

Went to a meeting of the Lymphoma Organisation at Christie Hospital last night. I probably wasn’t actually the youngest there, as I thought I would be, but I wasn’t far off. They were very helpful and very friendly (why wouldn’t they be?), and I will certainly go again next time, in November.

Broke a tooth this morning – need to get that fixed too.

The radiologist

Just had a call to invite me to a meeting with the radiologist on “Monday evening” – time yet to be determined.

I look forward to hearing what he has to say, and what he has in store for me. But there is a sense that it’s getting serious now, and it’s hard to avoid a feeling of being overwhelmed. And this “watch and wait” is really quite difficult to take, sometimes.
It’s been 4 months now…
There is a meeting of a Lymphoma Organisation Support Group in Manchester next Wednesday evening. I think I might get myself along to that and see what’s what. Reading about radiotherapy on their website, I note that it is usually preceded by a course of chemo therapy, so I am wondering why this isn’t the case for my particular example. While I am sure that the people looking after me know what they are doing, it would be good to understand what makes my case different from the majority. I will raise this on Monday when I see the radiologist.
“BUPA Wellness” phoned me yesterday to arrange my biennial MOT. I tried to explain to the booker at the end of the phone that I wondered whether this was absolutely necessary, but I suppose it will be good to know that my heart isn’t about to give out before the rest of me does 🙂 That’s sorted for the last week in September. If I’m busy doing “other stuff”, then I’ll cancel.

Escalation

Had an email from the haematologist’s PA this evening. He has now discussed all the results with his colleagues and everyone concurs that I have follicular non-Hodgkin’s Lymphoma.


So, today, he has referred me to a radiotherapist at our local cancer centre. I don’t know how long it will take for him to get back to me, but I’d like to think that I should hear from them within a few days – this time next week at the latest. Got to get on with this – we fly to Malta in exactly 6 weeks.

So, in the meantime, I have arranged to see the haematologist again for a check next Tuesday.

Exciting times at the moment. There’s a new camera being released by Leica next wednesday, and I was privileged to be given an invite to the launch in Germany. (That’s the meeting I referred to last time – we can talk about it now 🙂 ). Unfortunately, it has transpired that the above events have overtaken us, and not only do I have to be able to clear my diary at short notice, but the cost of the flights to Frankfurt are now prohibitive. I don’t want to be the one that makes FlyBe its profit for that particular flight…

Maybe next time.

I have lots of friends looking out for me and supporting me near and far. I appreciate every one of the messages I receive – I know a lot of great people. However, someone I know sent me a message the other day to say that his partner has recently been diagnosed with ovarian cancer. And I thought I had it rough – what I have is nothing compared to the situation that others are in. So, my thoughts go out to her, and him at this really difficult time.