A ROUNDUP + Velindre – appt.: Dr. Lester re.: MRI Results – 12-Aug-2011 – 15:15

A ROUNDUP + Velindre – appt.: Dr. Lester re.: MRI Results – 12-Aug-2011 – 15:15

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Hi,

well a whole week since my last Radio Therapy and I still seem OK!

I was on time for a change so not driving hell for leather.

As I thought Jason Lester is still on holiday and was right so I saw his Registrar Rachel Micalles – I am pleased to say the MRI scan has for certain shown up no signs of mets. in the spine anywhere nor in the sacrum or seemingly the pelvis so that is the good news!

The not so good news is that I do have fairly notable degenerative disease in the spine – I offered the explanation this might be as a result of a degenerate life but seems not!

They are not sure what causes it but in the main, in my case, put it down to being the result of wear and tear damage – well I guess I’ve earned that diagnosis!

I gather that being more specific about diagnosis is not really worth the effort at this stage as the likelihood it will be some form of arthritic condition seems certain and clearly I am shrinking!

I have in fact lost about 3 inches in height largely as a result of the disease, though scoliosis and being cut in half do little to help!

SO BACK TO CANCER!:

It seems I have survived remarkably well to date! I am told that the Chemo. did indeed shrink the tumour and seems to have killed off the cancer in the lymph system – SEEMS is an important word here as it is, at this stage hard to tell!

Then having had, as described in this blog, very little side effects from the belting with chemo. it was on to Radio Therapy and 20 rides of around 57 seconds on the Linear Accelerator being cooked with accelerated electrons!

To date I have also survived this well – I was reliably informed that I would most likely be far too unwell to drive myself to treatment every day but fortunately I drove myself on every occasion and apart from around an hour in the evening when I felt very tired I have had virtually no side effects of consequence.

At the moment I am told there is little point in scans or a ‘flexi’ as the full effects have not completed adequately to conclusively show up and apparently the inside of the bladder is likely to be fragile and inflamed AND very prone to the introduction of infection so leave well alone.

Next appointment is now Mid October – which beats even the original 6 month prognosis at best!

SIDE EFFECTS:

It is not strictly true to say ZERO side effects but for sure they have so far been inconsequential.

At one stage for a day or two I had perifferal vision flashes which were a bit odd and I guess must have been an effect on the optic nerve of the blood supply due to cancer (maybe not!).

Fortunately I have not felt sick at any stage and my appetite has been fairly good – largely due to the efforts of Lee in pandering to it! Also to be fair thanks to Nairn in the early stages for the constant supply of relevant mouth washes such as ‘Difflam‘ which controlled the problems of mouth tongue and upper throat ulcers, which only really featured in the early days of Chemo.

There have been periods of mild diarrhea but of little consequence and with the hernia to my nephrectomy wound I have got used to this!

Several of the other patients have said their diarrhea has been quite a problem at times – fortunately mine has been only occasional and no problem.

There is no doubt they have been playing merry hell with my bladder! Particularly during Radio Therapy and I am urinating far too often for convenience! Particularly at night where I rarely get more than around 2.1/2 hours of continuous sleep without a visit to the toilet!

To be fair I do consume a fairly high level of fluid with around 2 pints of fruit juice a day minimum and at least 4 pints of milky strong coffee.

I also consume not less than a pint of yoghurt a day in one form or another – I FEEL that since the system is being bombarded and the gut flora seriously damaged or at best irritated it is worth helping with a replacement together with a consequential amount of fruit relative to normal.

Well if the treatment is working and these are the worst symptoms so far I would call this a very good trade off – though we will not know just how successful the treatment has been for a few months. That said the very fact that I am still here is very much down to the treatment as in April I well recal Jason Lester’s prognosis that without treatment I had a probable 3 months at best 6. Well I’m still here and feeling OK – of course not 100% energy wise but beyond that I can hardly complain and this is after all 13 years after I first presented with ‘frank haematuria’ (I miss spelled that and MS correction was ‘crematoria’ Ha Ha!) as the first symptoms of all the fun to come since!!

Haematuria:

A passing tip for those who are too scared to go to their Doctor if they think they may have blood in the urine the obvious diagnosis is ‘stupidity’!

Blood in the urine is a SYMPTOM only go see your Doctor as soon as possible – most causes can be dealt with simply the others WILL KILL YOU if you let them get hold undiagnosed!

A simple test if you are in doubt is to pass ALL urine into a glass (clean) coffee jar and leave it to stand until naturally cooled blood in the urine is likely to settle out as a distinct band but just because it doesn’t does NOT mean you should avoid seeing your Doctor.

Blood in the urine is also an early sign of possible diabetes and minded that The EU is threatening to withdraw driving licences from those with diabetes who let it reach the stage of injectable Insulin perhaps an early check is well advised!
.

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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.
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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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25-Jun-2011 – We are never alone on the Roller Coaster! Good Luck Hilary!

25-Jun-2011 – We are never alone on the Roller Coaster! Good Luck Hilary!
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Saturday, June 25, 2011

Turns out that being in hospital is like war…

long periods of mind-numbing boredom, interspersed with short bursts of equally mind-numbing terror.

Where was I? Oh, yes. Chemo.

It turns out I have “difficult” veins. I’ve always had this problem and am the bane of all IV-inserters’ professional lives. Yesterday I got in here by about 2pm and at 2:30, three different nurses had tried to put in a functioning IV into my arms and hands in four different places. On the fifth try, we got it to work, but the decision was made to surgically insert a veinous catheter which will have to stay in my arm for about a month. Until the next round of chemo.

That was fun, requiring a short surgical procedure during which I learned that I have a robust resistance to local anaesthetics. Great fun to be lying on a table, with them digging around 5 cm inside your upper arm, dodging important arteries, and suddenly they hit a part that the anaesthetic hadn’t found yet. Four tank-fuls of local anaesthetic later…Gah!

Oh, and no swimming for three weeks. I can lower myself into the pool, but I have to cover the bandage with plastic wrap and try not to get it wet. Fun fun!

This morning, I had another batch of water spiked with a large dose of anti-emetics, anti-histamines and various drugs that are meant to protect the stuff chemo drugs attack and that I need to keep. This kind of chemo kills the cancer but also the cells lining the bladder, and the kidneys and the brain, so as I’ve been having the IV drips of the deadly stuff, I’ve been given small doses of “antidoto” in the form of pills that dissolve in a glass of water to stave of “neurotoxicity”.

I realise they have to tell you these things to keep you up with “informed consent” but really, there are a few things I might be better off not worrying about. They know the signs to watch for and are so attentive that I’m growing in confidence.

Today we had to wait seven hours for a surgical expert to come to insert the “pic” and the next bag of poison was delayed. I am just about finished the second batch, cisplatin, and am having mannitol as a chaser to keep my kidneys from failing. There is a gaggle of nattering Italian ladies chattering away all at the same time, clustered around my roommate’s bed, and I am torn between being slightly jealous of their customary stick-togetherness, and relief that I don’t have to be pestered all day by crowds of relatives. Such an Anglo misanthrope, me!

Every time the nurse comes in and hooks me up to another plastic bag of clear liquid, I ask the same thing: “Che cos’è?” One of the nurses is obviously becoming annoyed by my obsession with knowing exactly what and how much poison they’re pumping into me. When they hooked up the Mannitolo, I asked again, and she said that it’s just “the protocol. The doctor esplain it all!” From now on I will just crane up and read the label upside down and quietly type the name into Google.

The nurse has just come and added another one to the ever-growing stack of plastic bags and bottles of incredibly toxic substances on the little table in the room, all waiting to go into my arm. At the other end of the table, the roommate’s six female relatives are clustered around a little portable DVD player watching home videos. (The three men are all chatting in the hall outside the door.)

There is always something slightly surreal about medicine.

Oh by the way, a little note for people planning on getting cancer in Italy, don’t get it in the summer. The Gemelli doesn’t have air conditioning. I got a friend to bring over a fan (and the weather has not yet reached the Terrifying Italian Summer-On-The-Sun tipping point where even a fan at full blast ten inches from your face is no relief) but I can’t imagine what everyone else is doing. Sweltering I guess. The procedure room where I had the surgery was at least ten degrees hotter than my room. I can’t understand how they manage it, but I’m a northern Celt and we don’t do hot weather.

More gruesome details as events warrant.

H

~

1 comments:

Greg_L-W. said…

Hi, but isn’t chemo fun!!! I’ve been playing this game for 13 years and I’m still here annoying people! I finished chemo 2 weeks ago and so far I won the race – they are killing the cancer faster than they are killing me THEY THINK so now it is on to 20 hits of radiotherapy starting on the 11th. I’m also on Cisplatin but my chaser is Gemcetabine. I hope you don’t mind I just nicked your article WITH LINKS and put it on my health site at: http://GregLW.blogspot.com – you may care to link to help others on The Roller Coaster! One way to safeguard a PICC Line is to use cling film – to bathe or shower! Have an immense amount of fun! Regards, Greg_L-W.
To view the original article and maybe trace others CLICK HERE
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 Please Be Sure To
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I Have Been Fighting Cancer since 1997 & I’M STILL HERE!
I Have Cancer, Cancer Does NOT Have Me
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
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18-Jun-2011 – The Worst Day So Far!

18-Jun-2011 – The Worst Day So Far!
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Hi,

having had chemo on Wednesday I must admit it is rather kicking in today!

Last night was a real rubbish night of disturbed sleep – but I was not alone and Lee gave up on me being restless and vanished off to the other bedroom, as she is won’t to do if I’m not sleeping properly!

I noted she was still awake reading at about 06:15hrs. this morning! I must have got up and wandered around at least twice an hour by then! If it wasn’t what was clearly a Chemo headache with that bar of pressure across the forehead it was tummy or bladder discomfort that kept waking me!

Eventually I got up feeling as if I had a real doozie of a hangover at about 09:30hrs. as I was feeling progressively worse in bed! Eventually I had a shower and went for a VERY gentle walk locally which made me feel a bit better but brought it home to me just how few Red Blood Cells I have carrying O2 around! I’d also hazard a guess that my platelettes are around 50-60 judging by minor blood when I blow my nose.

We were due out for dinner this evening but it was on a confirmation basis so I’m afraid I ducked out when I spoke to Rae – Yes I could have made an effort but to be a wet blanket and feel mis. in someone elses house is not my style.

I expect Sunday to be relatively rough then I should start rebuilding my bloods – if I confirm to pattern. Astonishingly everyone keeps saying how surprisingly well I look so I guess I had better keep up the act! Acting well and laughing actually makes me feel a huge amount better – I just can’t think why people do miserable!

I’m surprised I haven’t heard from David in Shrewsbury as he was scheduled for a ‘Peek & Poke’ this morning (Flexi for bladder cancer, check uuuup) – I do hope he had an all clear again.

 .
 Please Be Sure To
My Blogs
To Spread The Facts World Wide To Give Others HOPE
I Have Been Fighting Cancer since 1997 & I’M STILL HERE!
I Have Cancer, Cancer Does NOT Have Me
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

08-Jun-2011 – Off for day 01 Chemo on my third cycle DOUBLE HIT!

08-Jun-2011 – Off for day 01 Chemo on my third cycle DOUBLE HIT!

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Hi,

well my bloods were OK on Monday in fact they were ‘spot on’ to quote Lester.

So here we go for another double whammy of Chemo – just as I was starting to feel normal lets have another go at feeling bl”dy awful with mouth ulcers, no energy, despondency and infected teath with abscesses!

Oh Joy 😉

But the rest of the news is far better so whilst you read Alice’s essay above on the >TAB< I’ll see what I can come up with as an update!

Regards,
Greg_L-W.

 Please Be Sure To
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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

06-Jun-2011 – BLOODS, CLINIC, DELAYS & THE REAL WORLD!

06-Jun-2011 – BLOODS, CLINIC, DELAYS & THE REAL WORLD!

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  Hi,

Just to put some of this in perspective:

Mortality from cancer worldwide

Each year more than 7.5 million people worldwide die from cancer. Because of the size of its population around half of these people (50%) are in Asia). Around 12% of deaths worldwide are from cancer. The proportion of all deaths caused by cancer varies, from only 4% in Africa to 23% in Northern America ( Figure 3.11-2). In the UK around 24% of all deaths are caused by cancer.

Even considering WHO predictions that Cancer deaths will rise to 15M a year by 2020 CLICK HERE worldwide that is scarey but a tiny weenie number when you consider there will be approaching 8 Billion people alive then.
So currently out of around 56 Million deaths a year only about 7.5 million are related to cancer.
OK that’s you dead from boredom with statistics but it does put some facts around the fear 😉
Now to really bore you!
So on Monday Lee and I went to Velindre for a Clinic as although I had not been notified last Thursday I remembered I had Chemo on Wednesday (low on my priorities that week!) but when did they intend to check my bloods and when was Dr. lester going to come up with the results on my scan.
As anyone who has played these games will know – you desperately want the results of scans but you try to put them off as it MIGHT be a death sentence – Scanziety!
Anyway I bit the bullet and I suggested I came in for clinic on Monday and then if there was a problem someone else, with luckier results, could have my Chemo slot on Wednesday!
So we walker into Velindre on time! Another 40 miles down the M4! More of that later, but I’ve had a bit of a cunning wheeze I think!
It is astonishing in that busy hospital with all those agitated and concerned faces around just howmany seem to greet me by name!! I suppose it is ‘cos of the crazy ‘T’Shirt slogans and the determination to laugh about life and laugh with people however rough it gets!!
It is astonishing how many people end up chatting as they sit their looking glum and you say ‘Hi great to see you are still alive it gives me hope’! They ALWAYS smile after that!
Anyway – in for another armful of blood to be taken! No problem we were laughing about the risks of washing up when you are on Chemo – DANGEROUS might cut your finger!!
Right so off the blood samples go and the tests, which are done mechanically (well electro Mechanically sort of electronic and printed out on screen) are then human checked by someone with one of the world’s most boring jobs! 
That should take just over 20 minutes but in any busy blood unit it takes nearer an hour – werll it is all down to resources and of course Managers come far before Medical Care! Clearly there are far too many managers and parasites in the Kleptocratic QUANGOcracy.
What we need is more clinical & medical staff – not more parasites – clearly there is a log jam at Bloods and another in Radiography.
I would NOT have possibly terminal Cancer if instead of squandering £1Billion The Local Welsh Health Service had not squandered the money but bought the required Scanners and funded them. The scan I should have had in the first 2 weeks of January so that this could all have been sorted with simple surgery but waiting until the end of March to prove what we already knew led to metastases that may well kill me!

ANNOUNCEMENT:

whilst we were chatting with a couple where the wife had been a Sister at The Royal Gwent, in one of the few units she believed functioned OK, her husband had Prostate Cancer and was waiting for news of scans with a mixture of bold equanimity and trepidation – don’t we all!

The announcement was that Dr. Jason Lester’s clinic was running 90 minutes late!

Actually nuisance as it may be I never really mind – he sets up his clinic on a planned time scale, as is essential, but when he sets it up he has no way of knowing just how long his patients may take to assimilate what may be very grave news and he will – as I have seen repeatedly, give the time that is needed to every patient according to that need.

I may need that time one day and I may well think of the delay but …

So Lee and I checked in with the sister managing the clinic and asked if we could Mike Off to the canteen for an hour – no problem, the coffee is better, it is comfier and there is an outside view!

 Please Be Sure To
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To Spread The Facts World Wide 
To Give Others HOPE
I Have Been Fighting Cancer since 1997 & I’M STILL HERE!
I Have Cancer, Cancer Does NOT Have Me
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
on: http://GregLanceWatkins.Blogspot.com  
TWITTER: Greg_LW  
Health/Cancer Blog: http://GregLW.blogspot.com  
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27-Apr-2011 – 11:00hrs. Velindre FOR FULL BLOODS!

27-Apr-2011 – 11:00hrs. Velindre FOR FULL BLOODS!

Giant Platelets on a blood smear (40x).Image of Platelets (purple) via Wikipedia

Hi,

well it was schlep off to Velindre – initially I thought at a sensible time!Well I suppose most people are OK with mornings but I tend to write at night once the phone has died down so I am not very good on mornings!

The appointment for today started out as chemo at 15:00hrs. which seemed perfectly reasonable – no rush to get up, a leisurely shower and when we got around to it a gentle putter down the M4 – OK 32  miles is no big deal but when you start the day feeling dead headed any effort isd so much easier to put off!

Anyway I have to be there at 11:00hrs. for bloods – YES it does take best part of an hour to have them done and then have a coffee whilst we wait, in the canteen (praise be it is very good coffee).

Then saunter over to The CDU cardboard box and check in with the staff to be sure the results are through so we are now running at about 12:00hrs.

No problems as I gather all my various blood checks are seemingly OK – Woopy firstly I have it confirmed they haven’t killed me yet with this toxin they are poring into me – SECONDLY I can have my next dose of chemo. I have this, sadly all too rational fear that they may say – Sorry the response on the bloods, or what ever, is wrong we have to stop the chemo!

I wonder if that would be a death sentence!!

Well I’m OK this time although the platelet count is a bit low [Platelets, or thrombocytes (from Greek θρόμβος, “clot” and κύτος, “cell”)] – so Lee and I decide to have lunch whilst we wait for the chemo to be made up to the right dose for me in the Pharmacy.

Lunch was actually very good value although eating anything is becoming ever more of an eye watering experience due to the increasingly sore mouth ulcers which are well under way – particularly inside lower lip, inside lower jaw and on either side of my tongue and across the back of the tongue.

I gather this is all part of the fun of chemo! FOR SOME PEOPLE.

Please don’t think that if you have been prescribed chemo your symptoms will be the same as mine:
FIRSTLY:
There are many types of chemo and they come in different dosages.
SECONDLY:
Chemo is NOT an exact science and everyone seemingly reacts differently to the drug and the dosage.

So I may well have mouth ulcers whilst another person has hair loss, headaches or nose bleed.

I gather nausea is fairly standard but I’ve avoided that SO FAR and lethargy is also standard – which explains my feeling tired.

Lunch for me was a generous prawn salad (COOL & just about swallowable!) Lee had an equally generous and well filled baggette (I wish, but the crust would have been like a mouth full of razor blades – the salad was sore enough!).

Pleasant as the canteen is and friendly as the staff and other diners are it is not somewhere I would by choice spend almost 3 hours trying to pass the time!

Well its just gone 14:00hrs so back to CDU.

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