Summary Text

SUMMARY: First diagnosed with myeloma October 2011. Recruited onto clinical trial Myeloma X11 (Lenalidomide) at Bristol Oncology and Haematology Centre. First High Dose Therapy and Stem Cell Transplant (HDT&SCT) in July 2012. On maintenance until June 2017. June 2018 recruited onto Myeloma XII trial (Ixazomib). December 2018 Second HDT&SCT. On maintenance until February 2020. August 2020 Commenced treatment involving Daratumumab. April 2021 relapsed. June 2021 recruited onto Cartitude 4 clinical trial and infused with CAR-T cells in October 2021. My own immune system is now fighting the cancer . I am exceedingly fortunate.


Friday, 15 July 2016

Old Haunts

Again, I recently visited my consultant and my results were good with no detectable paraprotein and low free light chains. I was thus prescribed for cycle number 49. It doesn't take much to realise that next month, if I'm still in remission, I will be prescribed for cycle 50.  The staff at BHOC have made it clear that this will be something of a milestone.  Let's hope that the news remains good.

Since my previous clinic appointment, Margaret and I spent a few days in Northern Ireland. To explain, my first posting after training was to RAF Bishopscourt in Northern Ireland. Originally developed as an airfield in WWII it then became Ulster Radar with two huge radar systems, one on the former airfield and one at nearby Killard point. As such it provided long range surveillance for both civilian and military air traffic.  I joined the communications section providing high power UHF and VHF services.  We even provide the communications for the Concorde supersonic trials which took place over the Irish Sea.  I arrived in April 1975 and we married in the November.  Margaret immediately joined me so in effect we did not have a honeymoon. (we've made up for that since !). We were finally posted away in April 1977.

Being very junior in rank at the time, I didn't qualify for service accommodation so I successfully applied to live "off camp".  Initially we lived in the coastal village of Killough, but soon moved to the charming village of Strangford.  Our return trip started with a visit to the recently-opened Titanic Experience located in the famous docks area.



Well worth a visit, the impressive building houses a combination of audio visual displays which tell the story of Belfast's shipbuilding heritage, the construction of the famous liner and her ultimate demise.

We then drove on to Strangford where we booked into a very comfortable and friendly hotel.  When the weather allowed, we were able to walk around the village and especially to our former home.



Our home, of 40 years ago, was the lower of the only two bungalows in Quay Lane and within yards of Strangford Lough.  Across the lough is the village of Portaferry. During our trip, we were thus able to eat dinner in our own hotel and also, by taking the ferry, to eat across the water.  

Each day we had trips out to the site of the former RAF station and down the coast to Newcastle (with views of the majestic Mourne Mountains, and to National Trust properties of Mount Stewart and Castle Ward.  

This proved to a short but very enjoyable and fulfilling trip. Strangford was, and still is, a very special place for us.

And so to choose this month's saying:

Sometimes you will never know the value of a moment until it becomes a memory
(Dr. Seuss)

Keep well, and remember, YOLO
Stephen

Sunday, 12 June 2016

Sunshine and Music

Again my consultant is content with my results which are good and I'm still in remission.  I realise that it is time to update my blog and fortunately my calendar, which is always fairly full, gives me inspiration regarding content!

Notably, Margaret and I had an excellent trip to Cyprus again. It was wonderful to feel the warmth of the sun, to meet good friends and to enjoy the island's food and hospitality.

This picture shows our favourite beach at Evidimou.


We always make a point of having lunch here at the beach-side restaurant where we order "222" - that is two grilled halloumi, 2 lountza (smoked pork loin) and two fried eggs. Served with chips, salad, and a shandy it's not especially good for us but oh so tasty!

Yesterday evening we were treated to a concert in the Colston Hall in Bristol. This featured the Royal Philharmonic Orchestra (oh they did sound so good). The first half included "Thus spoke zarathustra", Strauss' Blue Danube Waltz, 2nd movement Beethoven's 7th symphony, and John Williams' Star Wars Theme.  The second half comprised Gustav Holst's Planets Suite which was enhanced by NASA images, projected onto a big screen, of each of the heavenly bodies. An amazing experience! You will have realised by now that the theme was the solar system.

And so to choose this month's saying:

Life isn't measured by the number of breaths you take,
but the number of moments that take your breath away.


Keep well, and remember, YOLO
Stephen



Tuesday, 10 May 2016

Happiness, Pride and a Little Emotion

Firstly, I've just got back from my monthly Consultant's appointment and yet again all is well.

Now to the real news. Margaret and I were treated, last Monday, to the sight of our younger son, Christopher, marrying Becks.  There were few dry eyes in the room as we watched first the four bridesmaids and then Becks and her brother James (who gave her away) walking slowly down the aisle. The ceremony was brief but very beautiful and afterwards, once the obligatory photos were completed, we sat down to an intimate meal with entertaining speeches and excellent food.


As can be recognised from Chris' clothing, the wedding was held in Scotland. Chris, our elder son Nick, and James all wore kilts adding much to this very special occasion. Margaret wore a stole in her family tartan. I confess that I only managed a tartan tie !

Travelling up to Scotland, we took the opportunity to visit two of my cousins, one who lives near Dumfries and the other in Edinburgh.  We stayed in Leith and took the opportunity to visit the Royal Yacht Britannia.  Again, an amazing experience often feeling as though we were invading the privacy of the Royal family.


In the afternoon we took a trip on the river Forth where a new road bridge is being constructed.


Journeying south to Ilkley in Yorkshire we met up with another two of my cousins for an enjoyable evening meal. Finally, what had now developed into something of a tour, we called to see the National Memorial Arboretum before driving on to the Imperial War Museum at Duxford.
Here we saw many exhibits but perhaps the most exceptional was the SR-71 Blackbird.


Margaret and I first met at Farnborough air show in 1974. This was the first time this aircraft type had been displayed in the UK.  Accordingly, the SR-71 is somewhat significant to us.

In summary a wonderful wedding followed by an eventful tour back home.

Having somewhere to go is home,
having someone to love is family,
having both is a blessing.
Unknown author

Keep well, and remember YOLO
Stephen

Friday, 15 April 2016

They say the boidie’s on the wing

Firstly, I visited my consultant and, yet again, my results were good. My Kappa continues to slowly decrease and my paraprotein remains undetectable. Noteworthy was the fact that my general blood tests results, haemoglobin, white count and platelets were all especially good.

During the last couple of weeks I've become aware of the dawn chorus. Living in the country as we do, this can be surprisingly loud. Unusually we also get a sunset chorus. I guess this is from  those birds who have had an especially good day!

That might then explain the title of this month's post. Well not quite.  After my consultant's appointment and when my prescriptions had become available I drove over to Essex.  The route took me on my least-favourite motorways being the M4 (boring) and the M25 (always congested). The purpose of the trip was to undertake flying training over the next two days or so.


The aircraft I was to flying is a Piper L18c being the military designation for the Super Cub.  This would hopefully prepare me for eventually flying the aircraft of my dreams being a Stits Playboy which has very similar control layout.

The next day I was "treated" to over four hours of instruction including Practice Forced Landings, Stalls (four different types), steep turns up to 60 degrees of bank, and so on.  By the end of the day I'd developed some skill in each of these but my take-offs and landings would require more work !

At the end of the day this "boidie" retired to my hotel very tired but pleased that I'd achieved so much in one day.  Over my evening meal and during a rather sleepless night, I began to have doubts about the advisability of buying and flying the Stits Playboy.  By the morning my mind was made up and I told my instructor that I would not take further training and would not be buying the Stits Playboy. My decision was largely based on the likelihood of not being able to maintain adequate skills after training.

I came home and, having made the decision, slept remarkably well !

I have not failed. I've just found 10,000 ways that won't work
Thomas Edison

Keep well, and remember YOLO
Stephen