Aboard Dignity (Lagoon 420) Blog

And happy with it. The place looks enormous after my hospital room. The new TV has exceeded our expectations and we haven’t tried everything out yet nor ran it with decent internet connectivity (which will have to wait). We did blow up the XBox power supply owing to it only running on 110V-120V. £10 dropped on Amazon and a UK power supply will be with us on Monday.

So I have a few days back home. On Thursday I go back to hospital and may stay for a while. I have some more treatment planned plus blood tests. I see three ways forward. 1) Blood tests show worrying signs so I’m kept in. 2) Blood tests show things are ok for now but more rest need. I come back home for a bit. 3) Blood tests so good they keep me in for round 2. I’m guessing it’s going to be 2). Mind you, it’s not like I’m not having treatment as I’m still being treated with multiple drugs including chemo. We have half the pharmacy at home for morning and evening doses of drugs. Helen is very good at looking after me in these circumstances.

General health position can only be described as good. Without very recent intervention my blood counts this morning were the best we’ve seen post-illness. I believe this means my body has the strength to recover and is doing so. I remain keen to get back into full chemo and see how I fare on another aggressive full round.

In the space of the last hour or so there has been much news.  Much of it from a very long chat with the Prof.

• I can be moved to oral treatment for my fungal infection but this requires a three day overlap with the daily intravenous.  That means I get to GO HOME SATURDAY EVENING.  It is now close to certain.  That’ll do.
• I have another Rituximub treatment planned for tomorrow to address possible EB Virus root cause.
• I will be booked back into the hospital next Thursday.  I will definitely stay for some day tests and day treatment of more Rituximub.  I may stay longer depending on test results.
• Recent scans showed active sites in spleen and liver.  Hard to tell exact cause.  In fact the Prof declared my case to be the most complicated he has been involved with in the last 10 years.  Doesn’t exactly sound good or encouraging but I am so relieved I am with Prof Linch and noone else.
• Turns out he lives about a mile and a half from our new place and knows the area well.

From other sources

• I’ve been told I’ll get delivery tracking info for the TV (read very flat screen of joy) this evening once it’s on the overnight truck.  I’m feeling confident.
• I now have email from the company recommending the insurance check.  The reference laptop is finally reasonable and the price acceptable.  I’ve agreed to the proposal.  Looks encouraging.

How things can change in a short period of time.  We can visit all the shops we want to on Sunday and I have a good game to play on my X-Box for my during my R&R.  I might just use the big screen.

Just did a deal with the daily nurse to bring in my evening meds a couple of hours early for Friday / Saturday.  Means I get to go home sooner.

It doesn’t escape me there are still many things that could interfere with this plan but at least we now have one and a few things I’ve working towards over the last few days are falling into place.

Incidentally, this timetable allows me to be present when the builder and possible also the engineer/architect visit our new property next week.  All good in the near term.  The long term, well I’ve promised the Prof a local beer when we’re all done.  I have faith.

The X-Ray was discovered unbooked. Once this was rectified I was down for my one minute chest X-Ray. The results of the X-Ray were reported this morning and things continue to improve in my lungs.

Today was my planned CAT scan. That proceeded on time. This is all part of the doctors assessing my condition with a view to getting me home for a bit to continue recuperating ready for chemo round 2. I was also giving a combined PET/MRI scan in a new machine. There are only six or so in the world and this was the only one in the UK. They are taking select patients and double scanning them so they can decide which machines are best for what sort of scan. They got their tests and I got a double scan, one with some very modern equipment. Win-win.

No exact news on if/when I can go home but it could be tomorrow. I’ve got two cases of protein supplements for weight building to take so Helen will have to come in with a suitcase.