07-May-2011 – YELLOW CARD – Bored, Knackered and Uncomfortable

07-May-2011 – YELLOW CARD – Bored, Knackered and Uncomfortable

DID I SAY I HAVE CANCER & I’m ON CYTOTOXIC CHEMOTHERAPY 
with a platelet count of 34 that is falling and clear signs of infection!

Hi,

I’m sitting in a consulting room in The Royal Gwent Hospital where I arrived at just after 20:00hrs. yesterday and it is now about 05:30hrs. and in a disgusting display of utter incompetence of the management structure of The NHS under the devolved irresponsibility of the super annuated Welsh Council they STILL have failed to find a bed for me!

This is where I have been since I arrived for urgent medical attention at the request of my Consultant’s staff at Velindre 9.1/2+hrs. ago:

In view of the circumstances and the state of my health how do YOU feel about the chair I spent the night in!

I was unable to sleep past 09:30hrs. on the 06-May02011 after about 4.1/2hrs. sleep so that is over 20hrs. without sleep so far and so far one coffee, no food and iced water from the cooler in reception since about18:00hrs.

Did I tell you I’m here ‘cos I’m not well and my Consultant’s team believes I need prompt and competent attention – perhaps someone can tell me how this level of abuse by the management of the NHS can be other than damaging to my health and possibilities of survival?

So in boredome lets consider The Velindre NHS Trust YELLOW CARD!

I will scan the card when I get home but here is the text:

Front Cover:

VELINDRE NHS TRUST

I am a patient on Cytotoxic Chemotherapy

NANE DETAILS NUMBER etc.

DRUGS: CARBOPLATIN & GEMCITABINE

CONSULTANT: LESTER

If you are unwell or are admitted to
another hospital for any reason contact
Velindre Cancer Centre aany time day or night

Telephone: 029 2061 5888 and ask for the
nurse with the chemotherapy pager.

Inside Front Cover:
Information for patients

You must contact Velindre Cancer Centre
immediately any time day or night if:

You have a temperature of 37.5C or above

flu like symptoms, chesty cough or any
other signs of infrction

shivering episodes

unusual bruising or bleeding

vomiting more than once in 24 hours

four or more bowel movements, or 4
episodes of diarrhoea in 24 hours

mouth ulcers or soreness that stops
you eating or drinking

you are admitted to another hospital
for any reason

Information for healthcare staff:

This is a Velindre patient receiving chemotherapy
treatment and is at risk of

Neutropenic sepsis

Treat all infective episodes seriously and promptly
with antibiotics.

If febrile will need urgent FBC and blood cultures.

If signs of shock or obviously unwell:

Do Not wait for blood results, administer IV
antibiotics as per neutopenia protocol:

http://www.wales.nhs.uk/sites3/home.cfm?OrgID=357

commence IV fluids

take serum lactate, glucose and clotting screen

monitor urine output – may need catheter and

hourly urine measurement

adminsiter 100% oxygen

consider referral to critical team

Contact Velindre immediately if this patient
is admitted for any reason. We have 24 hour
access to medical records and oncologist advice.

Telephone: 029 2061 5888 and ask for the nurse
with the chemotherapy pager.

The back page:
this page is not very relevant as it is just contact addresses that Velindre Cytotoxic chemotherapy patients might need!

Well its 04:30hrs.

No bed no antibiotics and I’ve just had a chat with one of the nursing staff and voiced my concern just think what The Yellow Card says!

Last Monday I came in and YES I had a very minor infection but a judgement was taken that my bloods were OK to cope with this but to keep an eye on it at home and monitor my temperature.

Clearly SOMETHING was going wrong sufficient for Velindre to require hands on checking and care – my platlet counts are down to 34 when norm is 150 to 300 – I have clear signs of infection showing in the blood and a Consultant on the phone is happy to let my infection rise and do nothing until after more bloods sometime in the future without checking with Velindre, without clear explanation and without seeing me!

This does look like crass irresponsibility and at this stage I may well take some very serious convincing that this is NOT utter irresponsibility.

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-Apr-2011 – Tomorrow Is just daunting!

03-Apr-2011 – Tomorrow Is just daunting!

Hi,

I have to be at The Royal Gwent Hospital at 09:00hrs. in the morning – for me that time of day is quite daunting enough!

That means leaving the house for a 1/4mile walk to where my car has to be parked, due to idiotic planning by MBC. So to be sure to be on time I need to leave at about 08:00hrs. so up at about 07:15hrs.

I guess as the treatment ‘beats me about’ I’d better get one of those Blue Badges just in case I plain can’t cope with a walk that far!

Yeah I know that is making a fuss about something all sorts of people do as a natural every day but may I remind them they haven’t had this bastard disease for 13 years! My sleep patterns are crazy!

So find somewhere to park at The Royal Gwent and pick up a form from whoever is on duty on The Urology Unit and set out on the trek to Phlebotomy for them to take at least half an arm full of bloods – before we go any further My Consultant wants to know every detail he can, which is reassuring.

Then for the trek to Nuclear Medicine where I am due at 10:00hrs. to WILLINGLY!!!! be injected with a Radioactive Isatope (as if the Japanese folly isn’t delivering enough already! – Well the probably will soon!).

I then have to find something to do for about 4 hours until I glow from every bone!

Then back to be scanned for a full skeletal scan – I’m told there are no side effects from the drug/injection but I must say if I am to keep away from Pregnant Women and small children (easy as it tends to be a habit on my part!!) I just have this feeling that if it MIGHT harm third parties then it can’t be doing me much good!

Interestingly, as Lee will confirm, I am finding it increasingly difficult to actually DO anything or make decisions – which at a time like this is so very selfish of me but I am increasingly focusing on beating this vile disease. Perhaps it will be a bit more rational after Wednesday when I get the results and we ‘Make a Plan’ for treatments and what that might entail.

~~~~~~~~~~#########~~~~~~~~~~
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