R+62 - "Going, Going, Gone" *

After a collapse at home late on Monday 9th January and being moved back to bed, David died peacefully surrounded by his family on Tuesday 10th January 2017.

David fought so hard over the last 21 months and was an inspiration to all around him.

We, as a family, would like to thank you all for your love and support.

We will miss you David.

Love Karine, Charlotte and Alexi  xxx

Going, Going, Gone
Bob Dylan
Lyrics:
I've just reached a place
Where the willow don't bend
There's not much more to be said
It's the top of the end
I'm going
I'm going
I'm gone
I'm closin' the book
On the pages and the text
And I don't really care
What happens next
I'm just going
I'm going
I'm gone
I been hangin' on threads
I been playin' it straight
Now, I've just got to cut loose
Before it gets late
So I'm going
I'm going
I'm gone
Grandma said, "Boy, go and follow your heart
And you'll be fine at the end of the line
All that's gold isn't meant to shine
Don't you and your one true love ever part"
I been walkin' the road
I been livin' on the edge
Now, I've just got to go
Before I get to the ledge
So I'm going
I'm just going
I'm gone


*Bob Dylan- "Planet Waves"- Track 2

R+59 - "Who Knows Where The Time Goes" *

Two days ago I was back in DCU and had a unit of platelets. Back again this morning for more platelets and a unit of whole blood.  The staff there are truly excellent and the atmosphere is always friendly and positive.  Nothing ever seems too much trouble even when they are run off their feet. It was very busy, a backlog from Christmas I suppose although they only closed for one or two extra days.

My weight has fallen a little more then went up a little bit yesterday.  I'm hoping it will plateau.  I've seen this quite often in cancer, maybe I'll be lucky!  Walking and balance are becoming an increasing problem.  I stumbled yesterday and was lucky not to hurt myself.  I now walk with two sticks but still feel unsteady, The leukaemia seems to be advancing very quickly.

Yesterday we've saw the GP and district nurse at home.  I have developed a bit of an infection - cough, sore throat etc - so am now on different treatment for the next week.

The district nurse has organised a bed downstairs and it arrived late yesterday afternoon together with other bits of equipment.  I think I will need the bed very soon.  The system has been incredibly quick at getting things done, a really impressive service.

My mind has accepted what is happening  but my heart is an altogether more mysterious organ and is taking its time.  Emotionally I'm 'ok' as in I'm coping but that's not the same as acceptance. A hug and a little cry with Karine every now and then through the day is a big help and brings a sense of relief and calm - precious moments.  In my darker moments I don't think I'll make the end of the month, at other times I don't worry about it, anything could happen and what does happen probably won't be what I expect or was worrying about!

I came across a saying quoted by a fellow sufferer on the Macmillan cancer site - "Worrying does not take away tomorrow's troubles, it takes away today's peace".

Fairport Convention - 'Unhalfbricking' - track 6

Relapse + 56 - "Precious Time" *

Karine, Charlotte and I saw the consultant again yesterday to go over treatment options. We all came to the same conclusion that palliative care is the only sensible course.  The GP is activating the local Macmillan service and social services and they will do needs assessments - can't be soon enough the way things are going.

My biggest problem is weight loss.  I'm losing weight hand over fist day by day and no one knows quite why.  I'm back in outpatients sometime in the next day or so but I'm not confident anything else can be done.

Karine is being incredible, we have hugs and tears every now and and they do us a power of good. My overwhelming feeling is of a terrible sadness, I so wanted us to grow old together, to see our children make their way through life and watch our grandchildren grow up. I just hope and pray that Karine will be able to do this for both of us.

Before you think there is no joy in our lives we all had  a wonderful time at Charlotte's on New Year's Eve......

Someone on Facebook commented that Eden looks as though she is disowning the lot of us! ......

and no, we weren't roaring drunk, just being silly and having lots of fun.


* Van Morrison - "Still on Top - The Greatest Hits" - disc 2, track 1

Relapse + 51 - " It's four in the morning. the end of December" *

Firstly an email has been sent to lots of friends and family so you may well have seen what follows.

Karine & I went to clinic yesterday morning.  The news is not good.  The chemotherapy in November hasn’t worked, in fact the leukaemia has advanced in spite of it.  This is something we had strongly suspected during the last two to three weeks so it wasn’t a total surprise.  The alternative treatments are immediate intensive inpatient chemotherapy  which could well kill me and may not work.  If it did work I would need another transplant to try and prevent another relapse with about a 25% chance of success.  However in July the government stopped funding second transplants. 

All in all this treatment is a high risk strategy with poor quality of life and little hope of success so I have opted for supportive palliative care.  My consultant has given me ‘six months’ but this is a pretty wild guess.  An infection could strike at any time and the advancing disease will cause problems at some point so it’s really six months plus or minus several months, more minus than plus I suspect.

Without any white cells I am extremely vulnerable to infections.  I am being kept going with a cocktail of antibiotics and regular blood transfusions so it’s frequent outpatient visits to manage this.

If you would like to visit you would be very welcome.   I suggest you do it sooner rather than later.  It is probably best to  call Karine’s mobile.  Alternatively call or text me.  I tend to have a siesta in the afternoon so would be grateful if you didn’t call the landline then.  If you are coughing or sneezing or think you may be becoming unwell please wait till you’re better.    Visitors in small numbers at a time energise me.  If you are coming from afar then please stay for a couple of nights, whatever is convenient. 

I remain in good spirits, mostly, so far - determined to make the most of the remaining time.  I try to live in the moment as best I can.  As we drove through the hospital yesterday the trees were stunningly beautiful  - covered in brilliant white frost in the bright morning sun.  I wished I had a camera with me!

Alexi, Lucy Eden Bethany Karine me Charlotte and Stewart just after Christmas

None of the above is confidential so please feel free to pass it on to whoever you like in whatever way you like.

Karine and I wish you all a very happy New Year,

With all our love

D & K

* Leonard Cohen - Songs of Love and Hate - opening line of "Famous Blue Raincoat" track 6

R+48 - "December Song" *

Been home ten days now, so far so good, no sign of any infection. This is largely down to great care from Karine and to me avoiding groups of other people. The house is awash with cleaning agents, though Karine sticks to the environmentally friendly ones as much as possible.  The main risk is everything we touch around the house, appliance handles, door and cupboard handles, taps, TV remote controls, telephones, hand rails etc. The more you think it about the more paranoid you get!!

Meanwhile I live on blood and platelet infusions and a cocktail of antimicrobial drugs.  There is no sign of the bone marrow recovering and the consultant thinks this should be happening by now. The upshpot of this is he is considering a repeat BM Biopsy probably next week but nothing is decided yet.

There are hospital visits for blood counts and transfusions on Wednesday 28th  and to see the consultant on Thursday. The crucial question is have I got any neutrophils back? If so this changes everything and I will be absolutely over the moon, thrilled to bits and heartily relieved because this means the bone marrow is waking up and it looks as though the chemotherapy is working, at least to some extent.  It will mean I could mix a little with other people.

No neutrophils suggests the opposite so there is no point in continuing with the chemotherapy for the next three to four months. The leukaemia would have a field day, well at least that's my understanding of the situation.  Hence a BM Biopsy to properly assess the situation. I just hope they can get a useable sample quickly, it's been a real struggle recently.  If it's bad news I don't know what happens next and until now deliberately haven't asked.

Christmas celebrations went ahead joyfully chez nous.  Karine decided on a no stress Christmas so no big meal as such but plenty of good food.  Charlotte and Stewart, Bethany and Eden joined us for the day.  We all sat down together for a slow meal in the conservatory (it was a lovely bright sunny day) and ate things like smoked salmon, foie gras, home made little savoury tartlets thanks to Karine and Charlotte, olives, delicious home cooked cold sliced gammon, little chipolatta sausages made by the local butcher etc etc.  All this washed down with champagne and a special prosecco which Charlotte and Stewart had bought at a Chatsworth food fair earlier in the year.  I don't really drink alcohol, the taste puts me off which is a pity but does mean I get to drive people home!

Today they are all back again and Lucy and Alexi have zoomed down from Newcastle to see Lucy's family yesterday and us today. Lucy is back on a twelve hour shift in A&E this evening so they will leave early. She's already done the night shifts in the run up to Christmas including Christmas Day night finishing at 8am on Boxing day morning, an exhausting schedule.  Alexi also worked over Christmas.  We also have one of my nephews and his partner popping in on their way up to the Peak District, we haven't seen them since August so it promises to be a great day.

We have also had friends come round during the Christmas break, mainly in ones and twos and the change of company is a real tonic for both of us.  If anyone would like to visit they would be most welcome.  Please call first unless you don't mind finding us out, as there are hospital visits two or three times a week.  Infection is a big danger so please stay  away if you are coughing or sneezing or think you might be going down with something. There is some flu and some norovirus about at the moment. If the weather is half decent you may get dragged off for a very short easy walk. The muscle loss whilst in hospital earlier in the month has been dramatic and it is proving hard slow work to regain the lost ground.

The next post will probably be later this week to report how the hospital visits went and what happens next.

A belated Merry Christmas from Karine and I to anyone still awake after reading this!

* George Michael - "December Song" - the title track off a 2011 EP

R+37 - "The Naked Ride Home" *

The above title isn't completely accurate!  It's a sunny day but this isn't California, Karine and I are no longer in the first flush of youth and it's December in England so we opted to keep our clothes on!

The rest of the title is perfectly correct, I'm going home this afternoon together with some extra tablets, I can't wait.  Karine and Charlotte are coming to pick me up in an hour or so.  Then it's back to the Day Case Unit in three days time on Tuesday to see if I need more platelets and again on Thursday to see the consultant to discuss the next round of treatment and check my blood counts before the Christmas weekend.

It feels fantastic to be going home especially on a bright sunny day such as this, things are looking up!


Jackson Browne - The Naked Ride Home, title track

R+36 - "The Boy in the Bubble" *

No temperature for nearly three days now so perhaps the infection has gone. Each episode seemed as though it would never end and made me feel that this was not a life worth living. Then the fever would start to subside, the horrible shaking would settle and the other symptoms such as no saliva would resolve themselves, life would start to take on some colour again and the future would make an appearance once more.

If everything goes well the IV antibiotics will stop later today. No bug has been found for all this palaver which means the treatment has been empirical.

I am sustained by regular transfusions of blood and platelets and will need some more in the next day or so. As for going home, perhaps by the end of the weekend if I'm lucky.

I still have no neutrophil white cells so am not sure when I can start the second round of chemotherapy. This is likely to make me worse again as it upsets the graft cells whilst hopefully pushing back the leukaemia, more fun and interesting times ahead!

Karine brings food in twice daily for which I'm extremely grateful. That and the regular visits from her and Charlotte do more for my quality of life than anything else, oh apart from paracetamol when I'm spiking a temperature!!!

Once home the risk of infection is the big danger as before. I think I will need to wear a mask when leaving the house like those tourists one sees, they can't all have neutropenia can they?  Karine is threatening to put me in a glass bubble.

Later today we meet professor emeritus John Fletcher - after whom the transplant ward is named - and finally present the cheque from the walk in Derbyshire in September, £1,670.  Lucy and Mike my sister and brother-in-law as chief instigators, organisers and leaders of the walk will be there too,

Paul Simon - Graceland, track 1