Aboard Dignity (Lagoon 420) Blog

Frustration -> JOY

by steve, on July 19th, 2013 (UK)

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.

Some Frustration, Some Joy, Some History

by steve, on July 19th, 2013 (UK)

Frustrations :

I’m not going home today. An infection disease doctor is supposed to visit sometime to work how to get me off intravenous drugs each day. Also docs may have overlooked planned chemo treatment for my liver (HLH) syndrome which I’m on right now. Liver functions are really solid from the daily blood tests and I it’s been a while since I’ve been the yellow monster.
I am fed up and getting shirty. I don’t want to spend the weekend here waiting. I wan’t to go home or get on with my broader lymphoma chemo. Better still. Send me home on Friday and bring me back end of next week.
The insurance company has been frsutrating me with their poor offerings. While writing this this may be turning into joy. The company tasked with finding a replacement called to say they have found one but can’t source it themselves and want to ask the insurance company to give us a check. The amount they are recommending is acceptable so stirrings of joy. They said they’d send an email but I haven’t received it yet so frustrations linger. Cash is king as it allows us to retech a different way. When I ordered the laptop which was stolen our needs were different so we can use the money differently. Rather than pay for a power laptop it looks better to get a lightweight one, a pad and a desktop for our new home.

Joy :

Potential joy if the laptop insurance works out.
New vacuum cleaner has arrived at Betty’s. Not a big deal but it’s been ordered early so we can use to tidy up flat before we leave. Brings some solidity to the idea we’re moving into a new home soon.
I have been informed our new TV is being delivered. Joy. If I use the consignment reference given it is not listed. Frustration. Would be nice if it arrives tomorrow AND I AM LET HOME FOR THE WEEKEND.
I feel good. My weight is returning. SEND ME HOME. (Get the idea)

Some History :

Helen and I visited the nearby Petrie Museum of Egyptian Archaeology hidden away in the vast University College of London Campus. It was a pleasant distraction from the hospital which, incidentally, I WANT TO GET AWAY FROM.

Click to see Pictures

Incidentally, some people have for a long time been unable to view pictures. For them I have set up an alternate which I hope works. If you’re one of these people please click on the link above where it says “Click to see Pictures”. If this works it will be a regular feature. In time I will seek a better answer.

I’ve Been Scanned

by steve, on July 18th, 2013 (UK)

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.

Medical Update – Six Weeks On

by steve, on July 16th, 2013 (UK)

Prof Linch was back from his hols yesterday acknowledging he’d been following my progress while away. We had a long chat. The general impression is that this week I’ll be having further tests (chest X-Rays, full CT scans) to assess progress with a view to getting me onto oral drugs and be allowed home for a few days for more pre round 2 chemo recuperation. While I’m keen to move on with my broader treatment this all sounds good. I may even be able to attend a builder’s visit to our future home planned for Wednesday next week. The frustrating thing is there is no time commitment on the X-Ray and I just have to sit around waiting. That’s no good.

Forgot to mention that we were visited by Betty and Emily (sister-in-law and niece) as well has Ed and Cornelia (A Capella) over the weekend. Visits are always nice. Come and see me if you’re in town and have an hour to spare.

Laptop insurance claim is stalling a bit as they don’t seem to be receiving the emails I am sending. Am calling a couple of times a day to try and move this on.

Oh, and by the way. Today marks six weeks as an inpatient.

New house pictures

by steve, on July 15th, 2013 (UK)

Here’s a whole lot more pictures of our soon to be new home. There’s too many and they’re not too well sorted. For those who like pics, this may not matter.