Well, it’s been a fortnight since my last confession, and things are pretty much as they were.
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.
I will post my first experiences in the hands of a radiologist when I get back from work.
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.
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”
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.
Bloody radiologist hasn’t called today, which means that things are getting pretty tight with regards to getting 4 weeks of treatment in before we go to Malta/Italy.
… is a virtue.
Just had a call to invite me to a meeting with the radiologist on “Monday evening” – time yet to be determined.
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.