A grand day out and "Doing It Oneself"

The weather forecast wasn't brilliant yesterday (Sunday of the Bank Holiday weekend), but we decided to go to Llandudno for the day regardless. It absolutely tipped it down on the A55 - a proper cloud-burst. Very unpleasant. But by the time we'd come down from the Clwydian Hills and towards Colwyn Bay, things brightened up a bit.


Llandudno is an odd place. It pretends to be quite up-market, but scratch the surface and it seems to appeal to the same demographic as most of the other north western seaside towns. Only, here, all of the tat and the burgers are restricted to a narrow strip at the western end of the north beach. The actual prom is pretty dead, with a wide walkway and lots of 3-Star hotels fronting onto the road. All the activity takes place one block inland - presumably to keep away from the on-shore winds - which were pretty strong yesterday.

After an hour or so of that, decided to head over to Anglesey (second time in a month!), and go to South Stack, beyond Holyhead.  A busy spot on top of the headland, but a great lighthouse on a smaller island, accessed (in good weather) by a foot bridge (closed yesterday). This place is so far west that the mobile phone service is provided via Ireland... Definitely worth coming back to when the weather is a bit less clement - would be great with some incoming clouds or a storm. One to remember. Came back via Beddgelert. What a lovely little spot - again, one to come back to when the hoards have all gone home. And finally, a quick stop to grab a shot of Snowdon from the usual spot at Capel Curig.

Have done some investigation into how PCTs work, particularly with regards to providing funding for drugs and therapies which are NOT NICE approved. Having spoken with the finance department of the PCT, it is possible to do this, on an individual basis, so I have provided all the information I could find to my haematologist. I will be very disappointed if I find that he hasn't already started to do this himself, on my behalf. It seems to me that you have to take charge of these things yourself if any progress is to be made, as others don't have the same sense of need that you do. Despite several emails, my haematologist hasn't come back to me about progress on this, or the Bupa application yet. A "gentle" reminder is in order, I think.


Been a cracking day today though - let's hope that this is settled now for 3 weeks. Somehow, I think that might be wishful thinking ...

Struggling

I have emailed the haematologist a couple of times but have had no response from him as yet - nor his private PA who has been very good in the past.

This morning I spoke with his NHS PA, and asked her whether she knew if he'd been in contact with Bupa yet. She did not know, but she did confirm that he has written to my GP informing him that he has now taken me back onto his private list. I suppose that's something at least.

I advised the NHS PA, as I had done the private one in the emails, that I am on leave as of Friday next week, and would really appreciate some progress on this before I go away.

I have also made an appointment to see the GP before I go on leave, to update him on the situation and see if there is anything that he can do to help. But, as always, you can't get to see him until the middle of next week (literally).

I will continue to pester my man until I get an answer from him. If Bupa can't help, I will be seeing my MP at the first surgery he has on the new term...

I did an inventory of my film at the weekend, in readiness for the Scotland trip. I have 2,700 frames in the freezer - mostly black and white (Acros and Delta 100), but a lot of Astia too, that needs "shooting up". So, we're probably all set in that department.

I'm not sure how long it will take to process that lot, but it will keep me quite for a while... I will need to buy some more chemicals, especially for the slide film Note to self to sort that this week.

Apart from that, I'm just trying to work out how to find £666 per month for the next 5 years...

Bad news

Disappointed, but not very surprised, sum up my feelings up really.


After waiting nearly an hour and a half beyond my appointment time, I saw the haematologist yesterday and he had bad news for me. He has not been able to persuade whoever needed persuading that I should go on the Rituximab maintenance. Indeed, he said that his colleagues thought that he was mad to even suggest to me that this would be even an option.

Apparently, the Rituximab is licenced for use in my circumstances but has not been approved by NIHCE for this purpose yet. They may be making a judgement in November, which on the face of it sounds positive. BUT (big “but”…), they would be approving it for maintenance use starting three months after the end of the initial 8 session course of treatment. By November, I will be 4 months post-treatment and will not therefore qualify.

Bugger.

So, I am now in discussion with BUPA to see whether they will pay for the maintenance. One other slight problem is that the recommendation is now no longer one course of Rituximab every quarter for two years, but for five years, i.e. 20 treatments. At around £2,000 per go, we are talking forty grand’s worth, over the five years. BUPA have asked for a full report from the haematologist with details of my condition, the R-CVP treatment that I have recently completed and why he considers it to be in my best interests to have the maintenance. Given that this treatment needs to start at the beginning of October, he needs to get his finger out and get the report to them ASAP.

I mustn’t forget that the maintenance isn’t without its side-effects – people who are on the Rituximab for long periods tend to be more susceptible to other infections for example, as the white blood cell count is depressed by the drug, but the long term benefits are very positive in overall terms. Given that the maintenance regime has now gone from two to five years, I was wondering last night whether we are working up to a situation where a dose every quarter, for ever, is an effective “permanent” solution to keeping the disease under control. I am sure that by the time five years is up, someone will have done more research and a better picture will have emerged.
So. Until I can get an answer from BUPA, I am a bit in limbo.

I could be really selfish and cruel and mention the treatments that I have seen being given to frail old people in their nineties, whereas I am a “fit” 49 year old with another 17+ years of paying taxes to go yet, so where do the NHS’s priorities lie, but I won’t. If that old person was a grandparent of mine I would want them to receive the best of appropriate treatment too.

It’s just that I also want it for myself.

Maybe now is the right time to downsize after all. Let’s see what Skye brings in a couple of week’s time.

Off to see my consultant tomorrow

Having had a few weeks off from going to the hospital, tomorrow sees me back there for a follow-up with the haematologist.

I am hoping that he can confirm whether the maintenance is available to me, but we will see.

I have another CT scan to look forward to next month, and I'm surprised that he didn't want to see these scans before seeing me again, but I'm sure he knows what he's doing.

At Leica in London

Had a very good lunchtime today with David Bell and Jenny Hodge from Leica UK and Dr Eric So of Kings College London, who accepted the "cheque" on behalf of AICR, the charity that we have been supporting. Bill Palmer, also of the Leica USer Forum was there too.

Thanks again to Leica for all their support - we have raised over £10,000 for the charity, much more than we ever thought possible.

This is me, David, Eric and Bill Palmer at Leica in London this lunchtime.

Yes, my diet starts tomorrow...