The wedding was wonderful and I was so happy to have been able to be there. The [...]]]>
The wedding was wonderful and I was so happy to have been able to be there. The weather could not have been more perfect. The ceremony was moving, emotional and joyful. The bride was so beautiful and the groom actually looked smart. The reception was certainly lively and great fun. Steve would have loved it.
So here some highlights of the day. The cake was made by the bridesmaid with the short black dress.
I’m wearing a Burmese costume which my Burmese mother use wear for special occasions.
Today [...]]]>
Thank you so much for all your many messages and kind words to me. It has been quite overwhelming but a real comfort too. I have always know what an amazing man Steve was but to know that so many of you felt the same was wonderful.
Today Steve will be cremated. There will be no viewing, service or ceremony today as requested by him. We will just collect his ashes. Steve’s wish was to have a really good celebration of his life and a memorial party. I have penciled this in for 28th September 2013.
My wish is to hold the celebration in the new house which Steve was so looking forward to moving into. I will be completing and moving into the new house on 12th September. This will give me time to plan and arrange something special. With barely any furniture in the house I’m hoping there will be enough room for everyone. If anyone would like to send a short reminiscent, tribute, message or photos for the ceremony please email it to SteverSouthwood@gmail.com. I would like to make some sort of display for the day.
Tomorrow I fly to America for our son Ben and Amy’s wedding which is this coming Saturday. After the sadness of this week I am looking forward to this very happy occasion. I am planning to take some of Steve’s ashes and scatter it in New York harbour. We learnt to sail there and Steve loved sailing past the wonderful NY cityscape and typical of him, dealing with all the challenges of sailing in such a busy harbour.
A week after the wedding, my son John is flying to Australia to visit with Ella and my granddaughter Bao. John plans to take some of Steve’s ashes too. He will have a small celebration there and scatter the ashes in the Brisbane bay area where Steve and I had our last sail on Dignity. Steve would love the fact that he’s still travelling around the world.
Not long ago, Steve renewed the subscription to this blog for another two years. Therefore this site will stay open for at least this time so that people can read Steve’s words and share in the adventure we had together.
After the celebration of Steve’s life, I will write one more blog. A tribute to my very very very much loved and wonderful husband.
]]>Everything happened so fast. The day after I wrote the last blog, Steve’s high temperature continued to worsen. He started becoming more confused and losing his coordination. Each day he dramatically worsen. Yesterday morning when I arrived at the hospital, Steve was barely [...]]]>
Everything happened so fast. The day after I wrote the last blog, Steve’s high temperature continued to worsen. He started becoming more confused and losing his coordination. Each day he dramatically worsen. Yesterday morning when I arrived at the hospital, Steve was barely conscious and Professor Linch was waiting to talk to me. He basically said that none of the treatment Steve was on was working and he felt it best to withdraw all treatment and make him as comfortable a possible. I knew then that Steve had lost his fight with lymphoma.
I reluctantly called our son Ben in New York who immediately booked a flight for himself, his fiancee Amy and his brother Sam (who had only just arrived in the States from Australia the previous day).
I spent the night with Steve who stayed comfortable and sleeping peacefully. I asked him many times to hang on as Ben and Sam were on their way to see him. The nurses were great, looking after him with care and always maintaining his dignity.
Ben, Amy and Sam arrived at the hospital soon after 10 am this morning and with their older brother John, were able to spend the last two hours with their Dad before he died. I am sure Steve hung on to have this time with his boys and me before he sailed away from this life.
We are all devastated.
]]>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 [...]]]>
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.
]]>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.
]]>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.
]]>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.
]]>- 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.
]]>- 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.
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.
]]>Today was my planned CAT scan. That proceeded on time. This is all part of the doctors assessing my condition [...]]]>
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.
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