18-Mon-2011 MEA CULPA!

18-Mon-2011 MEA CULPA!

Hi,

my blog has slipped behind!

Firstly I am due for Clinic at 14:30hrs. later today and then hopefully Chemo. on Wednesday.

My Diary section is a complete muddle due to re-scheduling.

My Uncle Alan at 83 still has no answers but had blood tests in preparation for an FNA on Tuesday which is a little daunting at 83 since St. Thomas’s failed when they tried!

An FNA is a Fine Needle Aspiration in which they have a CT scan and then insert a needle into the tumour to withdraw a sample for biopsy. Let us hope all goes well – Brenda is going with him, no doubt after over 60 years together she is far too angst ridden to remain at home alone!

Well as you gathered my leukocytes and platelets were too low for last weeks chemo. so let us hope they have built up adequately for this week – tomorrow will tell.

I feel remarkably well but constantly tired.

Perhaps part of the reason for my blog lapsing is that I am still angry with the incompetence of the management and political structure of The NHS in Wales and before I actually write my formal complaints and publish them wide and far I incline to calm down and consider vengeance is a dish best served cold – once I start I intend to eviccerate the bastards who quite clearly are responsible for my cancer having metastisised to the Lymph glands.

It is clearly a management failure due to the squandering of public money designed for the NHS on politicised badging projects just because they could, that cost £1Billion rather than invest in fundamental equipment to ensure Radiography kept pace with medical and clinical need.

Now we have had the direct example of the F**k Off and die its Friday principle of NHS Management that too will be expounded in ruthless detail.

My very good friend at The Sunday Times is showing much interest in the story as not only did his Father in Law die of cancer but he has very much held my hand in the past. Without his intervention at the time there is every possibility my Nephrectomy would have been delayed yet further ensuring my death 10 years ago!

I will aim to in fill the missing last week in the next few days and will also try to update The Diary to the New Schedule also!

I just want to say sorry for copping out at times and leaving Lee and friends to cope!
Any help and support YOU can give her will be hugely welcome.
I do make a lousy patient!

If YOU want to follow my fight against Cancer from when it started and I first presented with symptoms see The TAB just below the Header of this Blog. called >DIARY of Cancer< just click and it will give you a long list of the main events in chronological order.
.
Thoughts and comments will be in chronological order in the main blog and can be tracked in the >ARCHIVE< in the Right Sidebar.
You may find the TABS >MEDICAL LINKS< and also >CANCER LINKS< of help. . YOU are welcome to call me if you believe I can help in ANY way.
.

Posted by: Greg Lance-Watkins
tel: 01291 – 62 65 62
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07-May-2011 – I’ve Gone Dotty! Well Legs & arms!

07-May-2011 – 01:35hrs. I’ve Gone Dotty! Well Legs & arms!
Hi,
well Royal Gwent here I come!
There is no hurry so although I HAD planned to go and catch up on sleep mid afternoon they do say ‘Life is what gets in the way of ones plans’ so make a couple of phone calls and then a shower.
I phoned my uncle/Alan as I thought if I am kept in then he just might call sometime tomorrow and might be a bit anxious if he could not get hold of me.
His biopsy at St. Thomas’ was I gather unsuccessful! He said at the time they had tried several times but the tumour was in some way very hard to access, so it now seems that they failed to get a sample and they have taken almost 3 weeks to get around to letting him know! NOT CLEVER with an 83 year old as it is clearly bound to worry them as breaks in routine and fear play a larger than life role in life.
Alan is being very stoic about it but clearly he is worried on Brenda’s behalf – after 60 years together that is hardly surprising especially as Brenda has had more than her fair share of health concerns over the last few years.
Another factor is their concern for Derek – Paula’s Father as I gather all is not well and I gather he and his wife Babs are feeling a bit dispirited at the moment.
Back to Alan and I gather since St. Thomas’ failed to get his biopsy they are going to have another go at his local hospital!!
Well I’ve made the needed calls.
A quick shower and off to The Gwent MAU (Medical Assesment Unit) to wave my Yellow card about! I must run a scan for your amusement when I get home – it is little wonder they are so helpful as it gives the impression that if I have presented and it is Velindre authorised I could fall over dead at a moments notice 😉 NOT to be read by the faint hearted!
Lee came down with me and I’m half pleased she did but the MAU was a complete zoo with waiting time on a forever basis – they were really good to us and I was given one of the consulting rooms to try to isolate me from other patients and avoid any risk of my being infected.
Every seat in the waiting area was in use and when we arrived one poor woman was bemoaning the fact that she had been waiting since 13:30hrs. And it was 20:20hrs.!

To be fair this is just a matter of bad management as when I came in on Bank Holiday Monday it was near empty!

It took about an hour for my bloods to be taken +ECG, BP (Blood Pressure) etc. then the long wait for the labs which rarely is under 1.1/2hrs. And will be more than 2 tonight at a guess!
Then there was a snag and they needed another batch of blood to use to do a culture – I get the impression they may have called Velindre.
Eventually at 00:50hrs. I’m told that I do have a slight infection showing in the blood which will have to be treated with an intraveinous drip, so I have to stay in – as yet as I haven’t actually seen a Doctor yet they are not sure if I will need a transfussion as well!
Poor Lee she looked so upset, she is so very scared for me but as yet to me it is just another bloody challenge – she is also VERY nervous at driving home alone – since we have been together almost 24/7 for 26 years although her driving is perfectly alright she has not driven anywhere alone on her own – yes with friends in the car or me in the car but not alone!
She is convinced something will go wrong and just as she is leaving she realises her mobile has gone flat! Well 01:00hrs. On a Friday night in Newport is probably her best time to start there is little or no sign of traffic about – Yes of course I’m nervous on her behalf but I have every confidence in her.
Knowing one isn’t fit enough to FIX things at the moment makes me nervous. Never before in my life have I not been master of the situation – how soon we forget ;-p Yeah Ok my nephrectomy was a bit daunting but I was 10 years younger and as it was a first I KNEW I was goint to beat the demon!
Then I never felt ILL yep frail from being cut in half but not ILL – this time around there is no doubt I feel those 10 years acutely and the relentless stress of cancer day in day out is wearing, however well one might be coping with it.
This time they are pumping my body full of Cytotoxic* chemicals and taking one to the brink – not knowing what the next symptom will be on the road to winning is naturally daunting!
I am now waiting for a bed and being set up on the drips – Lets hope they can balance me up so that I am OK to take both Carboplatin* & Gemcitabine* on Wednesday when next scheduled!
Mean while don’t mind me being worried Lee has got home OK.
*: these can be looked up in the Right Sidebar under the Hotlinks
Any detail you need do try the SEARCH at the top of The Right Sidebar.
I just want to say sorry for copping out at times and leaving Lee and friends to cope!
Any help and support YOU can give her will be hugely welcome.
I do make a lousy patient!

.
If YOU want to follow my fight against Cancer from when it started and I first presented with symptoms see The TAB just below the Header of this Blog. called >DIARY of Cancer< just click and it will give you a long list of the main events in chronological order.
.
Thoughts and comments will be in chronological order in the main blog and can be tracked in the >ARCHIVE< in the Right Sidebar. You may find the TABS >MEDICAL LINKS< and also >CANCER LINKS< of help.
.
YOU are welcome to call me if you believe I can help in ANY way.
.

Posted by: Greg Lance-Watkins
tel: 01291 – 62 65 62
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03-May-2011-20:30hrs. – I Must TRY To UPDATE GOOD NEWS TOO!

03-May-2011-20:30hrs. – I Must TRY To UPDATE GOOD NEWS TOO!

Hi,
I really must make more effort to update when my location changes as Roger had been reading the blog and Anne phoned thinking she would be speaking to Lee as I was still seemingly in hospital.
Mea Culpa – I was out again and had not caught up so she was quite surprised when I answered the phone!
Anyway it was really great that knowing I was in hospital or at least having read the blog and thought I was still there Anne and a couple of others called up to offer Lee support – Thanks, it really is a great help for both of us.
Roger is back on Sutent but this time the dose is down to 37.5 as 50 had just made him too ill – this time to their relief his system seems to be controlling the side effects a bit better. The normal fatigue but not the more extreme manifestations he had during the last cycle on 50mg. Dosage which he had been forced to abandon.
Roger has picked up an error in my brief comments on his Cancer Trail as it started NOT with RCC but with Prostate Cancer and what seemed to be a very successful radical prostetectomy. There was every reason to believe that he was in the clear.
Then a completely new round started with RCC this time but he has promised to write up his details rather better for me and I’ll include them on a link on this blog.
Check out the Hot Links in the Right sidebar for more details or use The SEARCH BOX at the top of the sidebar.
Anyway – yes I’m back home and my thanks to Anne and others for their calls of support.
I just want to say sorry for copping out at times and leaving Lee and friends to cope!
Any help and support YOU can give her will be hugely welcome.
I do make a lousy patient!

. If YOU want to follow my fight against Cancer from when it started and I first presented with symptoms see The TAB just below the Header of this Blog. called >DIARY of Cancer< just click and it will give you a long list of the main events in chronological order. . Thoughts and comments will be in chronological order in the main blog and can be tracked in the >ARCHIVE< in the Right Sidebar. You may find the TABS >MEDICAL LINKS< and also >CANCER LINKS< of help. . YOU are welcome to call me if you believe I can help in ANY way. .

Posted by: Greg Lance-Watkins
tel: 01291 – 62 65 62
Enhanced by Zemanta

25-Apr-2011 – Efforts To Prove My ID to be able to die!!! Even If I Don’t Want It For Years ;-)

25-Apr-2011 – Efforts To Prove My ID to be able to die!!!
Even If I Don’t Want It For Years 😉

Hi,

I probably only spent a total of 6 or 7 minutes in direct sunlight on Saturday in and out of a few shops and friends’ but I was aware of a sore (not very) scalp on this morning when I brushed my hair after a shower.

I shall have to be even more carefull of the side effect of sensitivity to the sun!

ME sensative to the sun!!!

Well off to Cribbs Causeway (shopping center at Junction 17 on the M5), Lee drove as she needs the practice in case I am unable to drive for her at some stage.

What a revolting concept shopping centers are, with their erzats blandness and impersonal sameness – it is extrodinary as one walks towards a shop assistant how, like some photo electric cell sensitive doll, they stand up straight gaining at least 2″ and develope plastic smiles to go with their part trained modulated offers of assistance!

We were able to get what I wanted but not a staff object in sight! I wanted some photos for a new passport – you would be astonished at how much ID is needed for legal forms and payments – Funny but no one has ever asked me for ID when they extort money FROM me.

Lee wanted a larger memory for her Olympus camera – probably to justify all the lenses!

She is struggling to come to terms with both the new technology AND the new camera which seems to do everything but make tea!!

Me technocrass so I avoid all settings on all cameras and try to work out what >AUTO< is but Lee feels a need to work out what all the buttons do and in howmany different ways!!!

I have a Canon IXUS130 which is small enough to carry in my waistcoat pocket and has a huge screen big enough for me to see. Yes I said see – there is no implication therein that I understand what I see!

Photography to me is strictly point and press despite having owned 10s of £1,000 of cameras over the years – I have NEVER had much interest in viewing the world through a view finder.

Whatever! Well we upgraded the memory so now I presume Lee will feel a need to upgrade her understanding of the complexity, which may explain why she is getting up early in the morning to act as a guid for Simon and a couple of friends who are near professional in their ability. Off to a few of the very impressive bluebell woods and view points around Speech House in The Forest of Dean.

On the way home we dropped in to see Gerald & Carol as being a Financial Adviser he is kindly sorting out various details for me – whether it is the illness, the treatment or just that I have an excuse now I just so hate ‘Bumf’. I lose patience witjh it in a matter of minutes.

Eventually we left at about 21:00hrs. as I was starting to flag a little, I lack energy which strangely comes in waves!

My mouth and swallowing are both very sore with ulcers as a side effect of chemo and the mouth washes etc. are doing little to control the discomfort nor the feeling my tongue has doubled in width and is raw – which produces extra saliva which means yet more painful swallowing!

Yes I’m being self indulgent and complaining but I have been immensly lucky as apart from a rather jaded feeling and a sore mouth I seem so far to have avoided the expected side effects and the pag of various anti sickness pills remains unopened!

Do remember this blogs aim is to tell the story warts and all to help others facing down the Grim Reaper with a deck stacked against them. Whatever the bastard’s disguise:

I have age and general fitness on my side and also 13 years of practice so lets see if we can beat the bastard for another 13 years!

Alan, my Father’s youngest brother is now 83 and as a result of losing his voice a couple of months ago has recently been diagnosed with cancer on the lung which is putting pressure on the nerve controlling the vocal chords.

As yet they have no firm treatment plan for him but let us hope it is a slow acting version at his age as with Simon (his son) living in West Virgina and now an American citizen to loose his voice and not be able to speak with him would be an added irritant. Simon’s wife Paula’s parents live locally to Alan & Brenda but although younger her Father is having his own second battle with The Reaper – so that is the three of us with cancer – woopy doo!

I just want to say sorry for copping out at times and leaving Lee and friends to cope!
Any help and support YOU can give her will be hugely welcome.
I do make a lousy patient!

.
If YOU want to follow my fight against Cancer from when it started and I first presented with symptoms see The TAB just below the Header of this Blog. called >DIARY of Cancer< just click and it will give you a long list of the main events in chronological order.
.
Thoughts and comments will be in chronological order in the main blog and can be tracked in the >ARCHIVE< in the Right Sidebar. You may find the TABS >MEDICAL LINKS< and also >CANCER LINKS< of help.
.
YOU are welcome to call me if you believe I can help in ANY way.
.

Posted by: Greg Lance-Watkins
tel: 01291 – 62 65 62