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Memory Update

Sorry I haven’t updated recently. I’ve been waiting for Steve to show some real improvement with his memory issues but unfortunately there hasn’t been any real change in that area.

There has been improvement with his general health though. One positive result of his memory loss is that he’s forgotten how much he dislikes hospital food and is eating well. He has finally gained weight and is doing gentle exercise to gain strength too.

The main concern at the moment is Steve immune system. He is struggling to generate enough white cells and platelets. Last week he started developing temperature spikes which is a sign of infection. An MRI taken showed inflammations in Steve’s brain, especially around where short term memory is thought to be processed. So he is back on strong antibiotics and antivirals.
To help the immune system and memory issues, Professor Linch has started Steve on Interferon. There are risks with this treatment but the benefits outweigh the risks if it works. Steve had his first dose the other day so we wait to see how he responds.

As for me, I still commute in everyday to spend the day at the hospital with Steve. We get regular visits from family and friends and a few times I’ve met up with old friends for lunch or a drink. Sometimes I take a break for an hour or two and visit some of the many museums, libraries, and shops nearby. That’s one advantage of being in the center of London.

I’m also kept busy with quite a lot of paperwork, fortunately Steve is so well organized that I’ve been able to take over quite easily. The purchase of our house in Chorleywood is going smoothly. We’re expecting to exchange contract next week and close end of August/early September. As many can imagine I spend many hours planning and scheming how to decorate and furnish the house. I’m very much looking forward to having a home again.

Thank you everyone for your continued support and words of encouragement. They certainly help to keep me strong.

Memory Loss

Steve had a seizure/fit last Sunday at home. I called emergency and he was taken by ambulance to Stoke Mandeville our local A&E hospital. He stabilized quickly but was left confused and appeared to have no memory of recent events. Stoke Mandeville hospital kept him overnight and then transfer him back to University College Hospital in London once they had talked to Steve’s doctor there.

Since then Steve has no memory of the past year and vague memories of the previous year or so. He often thinks that what happen a couple of years ago happened yesterday. Neither can he retain short term memory. Everyday is a new day to him. We have to repeat where he is, why he’s in hospital, his time and treatment in Australia, our sale of Dignity, our return to England etc. every day. Often what we tell him in the morning is forgotten by the afternoon. After four days of repeating the same facts, I have written down the events of the last year so that Steve can read it over and over again.

Many checks have been performed to work out why Steve had his seizure and memory loss.
The results of the MRI showed no difference between the scan from before and after his seizure. This is good news as there are no noticeable damage to his brain and no sign that his lymphoma is increasing and causing the problem..

The neurologist did a whole load of tests. All physical reactions and reflexes were good. Steve was able to read fluently, respond articulately, name all pictures of objects and famous people shown and do numerical recalls extremely well. He has complete memory of his birth date, place of birth, our children’s birthdays, our anniversary date, all the things that he’s known for many years. He just does not have recent memories.

The neurologist is incline to think that the seizure and memory loss are caused by an infection. So specific test are being made for brain infections. We should get some results by Monday. Steve also had some EEG done on his brain mainly to check that he not having mini stroke. If Steve has a brain infection than the doctors are pretty confident that once treated, most of his memory will come back.

Steve is still very much himself although I think he is more cheerful, optimistic, mellower and funnier. He said it’s probably because he can’t remember his worries, although not remembering is a bit of a worry!

For me it’s been pretty distressing but I’m beginning to come to terms with this new complication. So for the moment I’m making the most this funnier and sweeter Steve while it lasts.

I’m Home

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.

All Roads Point Home

Everything is now geared for my return home late afternoon. The drug schedule is running another 30 mins early so we could be away by 5pm. We have had a vaste bag of drugs given to take at home and walked through their application. The staff here are all excited I’m going home and pleased I have done so well recovering from the round 1 complications. The more I hear from people the more I learn they felt the situation then was quite dire. I’ll be looking in the mirror for a return of Mr Yellow Man diligently.

Thursday I am back for at least a day visit. I am booked in to stay indefinitely again but could be sent home again that day. We’ll see on the day.

As a complete aside I ran into a good bio for Professor Linch. Tells us where he is professionally.

John’s here now visiting so I’ll say more later. From home I hope.

Frustration -> JOY

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.