Jim's Blog

Wide Area Excision / Sentinel Node Biopsy

2010-08-24T19:41:57Z

Friday August 20th 2010

So here's the full low-down on my day in hospital. It's a bit endless, but it's meant to give those who come after the full monte - I'm not forcing you to read it, lol.

I wasn't particularly nervous about going in - I was just so desperate to get the procedure done, I seemed to have been waiting for ever, and I felt, rightly or wrongly, that the delays might be exposing me to unnecessary risks. Also I became paranoid that I would get some cold or flu that would stop them doing the general anaesthetic, so for the last two weeks I'd been suffering from one psychosomatic disorder after another.

Anyway Penny gave me a lift in, and we arrived as requested at 7:30. Can't say the initial experience was very reassuring. They arrange that you arrive just as the shifts are changing so we were "greeted" if that's the right word, by an extremely tired woman at the ward desk. I was going to say "I'm Jim Lawton, and etc etc," but before I could say anything, she yawned at me and said "Hiya, I'll just stick you in the day room". This room was absolutely appalling. It was about 4 metres on a side and had a few NHS plastic chairs down three of them. On the fourth side there was a broken table with an old televsion on it, and in front of that someone had chosen to park one of those cranes for lifting patients in an out of bed. There were no windows, no magazines, no posters. Nothing. I never gave my name, so if I'd been in the wrong ward it would have been all the same. Anyway we were left there for half an hour, and just as I was going to go and complain, in came the very efficient day-shift staff-nurse, and from then on everthing was super-efficient and more or less faultless.

She took me to a bed in a six-bed bay with two other chaps in it. The ward was perfectly pleasant, it was a general plastic surgery ward, not just melanomas. It had windows looking out onto some trees - and blessing of blessings theywere open!<span>. The staff-nurse</span> took all my details, in fact nearly everyone who came almost down to the cleaner seemed to take all my details - including when I had last done a poo. I was very quickly given a wrist band for each arm, and the surgeon arrived to look at my existing biopsy scar. He then drew a big arrow on my leg pointing at the scar . As soon as he had gone the anaesthetist came, asked me all the questions again, and said I could drink half a glass of plain water - I'd been fasting since midnight, and it was now about 8:30. The surgeon had said I would be last on the afternoon list - as it turned out I got moved forward so a more difficult case came last, but it was still a long time wiothout a drink.

As soon as the anaesthetist had gone, the charge-nurse came back to say I would be going to Nuclear-Medecine at 9:00 a.m., so Penny and I said our goodbyes, and I sat and read until yet another nurse came and told me the route to Nuclear Medicine. It was miles away - that's one massive hospital - it wasn't even in the same wing - I was in the Clarendon Wing on B floor, and the Nuclear Medicine place is in the Jubilee wing on floor E. Anyway I found it OK, and was quickly ushered into a very large room with a massive machine in it, and a single very pleasant young woman. Oh, this place had a very nice waiting area with magazines and a tank full of fish. Anyway, off with the trousers and she got me to lie on the bed in the machine, and then gave me four subcutaneous injections of nuclear material around the scar of the biopsy. They did sting a bit, but at least there, on the side of my knee, they weren't what I would call painful. Then as the lymph carried the nuclear stuff up my body, she took a whole load of photos - right up to the top of my chest (just in case, she said). The whole process took about an hour, and at the end she made two crosses on my groin (tickled a bit) where the nuclear stuff had found two sentinel nodes. Fortunately the nodes were "very superficial".

Then it was back to the ward - I managed to remember where it was :0). I suppose I could have gone and had a walk around, but I sat on the bed and read, and texted people, and listened to the radio. The best bit was when two prison warders came in with a lad on the end of a chain with his arm in a massive foam rubber sling, and the nurses put him in the bed next to mine. Never found out anything about him, and he was gone when I came back from surgery. At about 2 o'clock yet another nurse came and told me that they were "ready for me in theatre" and gave me one of those impossible hospital gowns to put on. From this point on everyone, including the porter who wheeled me to the theatre (back in the Jubilee Wing) asked my name and date of birth. That being wheeled around is very weird. There you are, a perfectly fit person being wheeled through the corridoors on a trolley, through all the visitors and passers-by.

If you've never had a general anaesthetic the next bit would be a bit intimidating. There's a kind of ante room where various people stick electrodes on your chest, an oxygen monitor on your finger, a blood-pressure cuff on your arm, and a needle in your other arm where they can administer the pre-meds and the anaesthetic. The room itself was a bit like a mad broom cupboard full of electronic gubbins and medicine all muddled up. Everyone was very jolly, and I wasn't particularly nervous. And then comes the moment when the anaesthetist comes in - and this is why you need never worry about being in an operating theatre. He squirts a couple of syringes into the line in your arm, and then says something like "this is the one that will put you to sleep", and he slowly depresses the plunger, and you look at him and he looks at you, and then CLICK all those people are gone, and you are iin a completely different room with a completely different set of people, and it's all over! (That's the recovery room by the way, in this case it was a bit ike the baggage reclaim of a small provincial airport). They give you a bit of time to get your bearings, and make sure you're breathing OK, and then the trolley is off back to the ward.

I have to say that last time I had a general I felt absolutey dreadful afterwards, and it took me a good few hours to sleep it off and then I had an astonishing headache, but that was eye surgery. This time, for whatever reason, I came back chirpy as a cricket. I now had a big plaster on my knee and another on my groin, and that was that. Penny was there to hold my hand, a tea lady gave me a sandwich and a cup of tea. The surgeon appeared again and said I was good to go so far as he was concerned and after about half an hour various people came to look at me, asked me all the usual questions, and eventually, around 5:30 said I could go home. They did give me a pack of strong pain killers but I never took them, a few paracetamols were all I needed.

That was last Friday. Saturday and Sunday I sat on the sofa mostly, with my foot up on some cushions. Had the cushions in bed too. I was OK staggering short distances with a straight leg. Now, on Tuesday I'm bending the knee slightly. The dressing gets changed or removed on Friday, and I expect to be back at work next week. That all seems pretty quick, I know, but surgery was on an area with plenty of loose skin, so I didn't need any flaps or donor skin, and the lymph nodes were in the vertical group at the top of my leg rather than deep in my abdomen, so I think I got off very lightly.

Sunny days off

2010-08-16T10:59:45Z

Surgery this Friday, so I've taken a few days off to do some DIY which I suspect will be a bit less possible after Mr Peach has chewed a hole in my leg, and extracted one of my lymph-nodes! For post-op I am storing up films on the hard-disk recorder, and laying in a massive store of biscuits. I've fixed the new extractor-fan and kitchen blind, so as it's a lovely day outside I'm going to put on the SPF zillion, the hat, veil, lace gloves and parasol, and go out and mow the lawn. Actually I've built the parasol into the mower - a bit like those things they have for baby-buggies. Yes I cut a fantastric figure as I ... sorry, going bonkers again, but hey, you can't be serious *all* the time :0)

Paperwork

2010-08-11T17:09:43Z

At last I have written confirmation for Aug 20th - Wide Excision and SLNB. It's been a long time coming, and until I actual got the call - even though I'd been told I was listed, I was still nervous. But just to play with my mind a tiny bit more, the letter says "report at 7:30 a.m. - ring before leaving to make sure there is a bed". Well, all I can say is, there'd better be. I know it's a pro-forma letter, but do they really go as far as getting the operating theatre, the surgeon, the anaesthetist, and then not have a bed? I'll bring my own, OK?

I never new Limbo would be so sticky

2010-08-02T11:30:22Z

Yes, wading through Limbo is truly energy-sapping, bit like being up to your shins in Grimpen Mire. I know there are people on this site who have spent much longer in Limbo than me, and my admiration knows no bounds. Keep wading folks!

Anyway, I spoke to Michelle, the surgeon's secretary again this a.m., and put the screws on a bit more than usual. (I am polite, but can be stern ). Anyway she is a lovely person, and said she was "more than certain" (I had to laugh) that I would be listed for Aug 20th. I pointed out that she had said I should expect August 9th, and she said yes, she knew, but apparently there are only two people per list, asnd etc etc. However, she did say that there was a possibility that one person on the Aug 9th list might not be OK, in which case I would get that slot.

In terms of knowing what's going on, this is great - and I did at the end, say I was sorry for being a bit more insistent than usual, to which she said that I could ring her as often and be as pushy as I wanted, because they don't want us to suffer from not knowing what's going on.

So from that point of view, I am reassured. However from the general perspective of the health service, is it right that a city of 700,000 people (the third largest in England in population) should have a surgery bottleneck of two lists per month with two places on each list? I'm guessing a lot of this stuff is done in other centres in the city area, but it still seems ludicrous. I shall be putting on my investigator's hat once I escape from Limbo (suck, suck)

Ah well, Michelle is ringing me back this afternoon, so I'll let you know....

You know, I could get snappy :)

2010-07-30T16:07:22Z

On the 16th of July (regular readers will recall) my surgeon's secretary (I call him "my" - I've never met him, and the way things seem to be working I never will) told me that due to various exigencies, happenings, planetary occlusions, acts of God, thermal gradients, and a lack of tomato sauce, I should assume I would get "seen to" (not in the tom-cat sense) on August 9th. This was just her guess really, I mean I heard her sacrifice the cockerel, but possibly that was just a sound-effect, or maybe she is an excellent mimic. Anyway, I held myself in patience, and with firm resolve and undying (I hope) optimism, refrained from bothering her further.
Today, being about ten days before the day suggested, I determined to ring her again. She knows who I am - no need to explain. This gives one some confidence, or perhaps now I might say it gives someone confidence, but not me, for much longer. "Oh, Mr Lawton" she says, for we are on second-name terms, "Mr Peach has just come back from his holidays" (I refrain from groaning "What, again????" ) "and is in a meeting. When he comes out we'll be sorting it out, and I'll ring you back.".
Ah the efficiency, the sense of quiet expectation, and of dates soon firmly to be fixed. Filled with confidence, we set off for a pleasant day out, never leaving sight of a friendly Orange antenna, and expecting, in the Industrial museum, walking by the canal, drinking tea in the pleasant tea room, and even later while sprucing up the kitchen paintwork, to hear the jolly chime of my mobile phone.
But can it be? Look. It's 17:01. There will be no call today. And it's Friday. So my life remains suspended once again over the abyss of unknowing.
I am however a Zen practitioner of the highest order. Because of years of practice, and a degree of self awareness not experienced by most of humanity, I am able to gain relief from this trial in the following way:-
"AAAAAARGHHHHHHHHHHH - FUCKING HELL" ....
Ommmmmmmmmmmmmmmmmmmmmmmmmmmmmmmm...

Frustration

2010-07-23T12:43:12Z

Suffering a bit with frustration today. There's the stuff you know, and the stuff you don't know. It's now eight weeks since I had my melanoma removed at the biopsy and six weeks since the result - it was 1.5 mil thick. The doctor who gave me the news stressed how urgently I had to get to see the dermatologists / oncolgists at Jimmy's. Hurry, hurry ... got there, but now it'sbeen three weeks of lolling about, with another two before the pencilled date for the WLE / SLNB.

I have no idea whether this passage of time matters or not. How active are any melanoma cells left around the original site likely to be? If they are there and they are left for two months, are they as likely to spread as the original MM? The hospital doesn't seem too worried, but as I said to my partner, if my destiny is to be killed by melanoma, then I'll just have to accept it, but I'm damned if I want to be killed by bureaucracy.

Because Jimmy's is a teaching hospital the SLNB is part of a clinical trial, and that has been one of the reasons for the delay - it requires a general anaesthetic and they couldn't fulfil one of their lists for want of an anaesthetist. I suspect that if I had taken the option of the WLE only, it would have been done by now.

Anyway moan over. Can't be positive 100% of the time. Actually, apart from the frustration of waiting, I'm still OK with the MM, I sometimes ask myself if I'm in denial, but I don't think so. Tonight Pizza for tea, and two meals out over the weekend.

Hope anyone who reads this is feeling upbeat and positive - let's all try and enjoy "now" and worry about later, later :0)

Jim xx

A good weekend

2010-07-18T21:14:34Z

OK, three weeks to the SNB, WLE all being well - not actually got a date, but that's the list I'm supposed to be on, max. Had a good weekend, though I had to get up at 5:00 a.m. Saturday as I'd got my thoughts in a loop. as soon as I wa upright I was fine - listened to old radio programmes on Radio 7 - "Listen Again" a fantastic blessing in the night. Got all my ironing done before Penny got up at 8:00 (My grandfather was a ship's steward, my mother expected men to look after themselves :0)

Saturday we did a bit of decorating, then off to Uppermill to see Dougie MacLean. What a singer that man is. (You Tube is your friend here :0) Today, a bit more decorating, gardening - visit from family for an hour just to make sure I'm not at death's door.

Tonight Penny cooked tea, I drank some red wine and we watched "Southland" with the cats. (They don't follow American dialogue though). Tried recording my melanoma poem on the computer - sound quality is pants. If I get it right ever I'll post the link.

Don't know about you guys, but sometimes I think "WLE in three weeks? Oh flipping heck, just show me what to do, I'll get the Stanley knife"...

Maybe not :0)

Goodnight ...

Got a date - sort of

2010-07-16T12:31:24Z

I think I chose the wrong time of year to be diagnosed. Because the surgeon has been on holiday for two weeks, he has a backlog, and the list which I should have been on - 30th July is short of an anaesthetist. So the surgeons secretary (lovely and helpful, I have to say) says it might still be done then,but more likely on August 9th. But on the other hand the surgeon is trying to get some more lists, so it might be earlier.

It's now five weeks since I was diagnosed, and I must say that despite the hospital being reassuring, I don't like all this time that's passing.

But what can I do? Er. Nothing. Put on a happy face :0) Pizza for tea, with red wine, followed by summer pusdding and cream - that looks quite good. I can put another coat of paint on the new squirrel feeder I've made. Yup I'm not short of displacement activities ....

How I found out - a poem

2010-07-14T20:16:25Z

Dr Mbugua Telephones

A few weeks ago, no more,
I noticed, which had not been there before,
A blemish on the skin beside my knee.
How big was it you ask?
About like half a pea.
It wasn't a thing to worry anyone,
If I had seen it on a child
I would have said
It's just a wart - and smiled.

But when I'd passed sixty
I'd made myself a rule,
that I would have these things checked out,
And feeling quite the fool
I went off to the doctor, apologising -
But she said, no, you're right to come
Though if this is anything
It would be surprising.

Nevertheless, she said, for the same reason
That you came to me,
I'm going to send you to a specialist,
But don't worry, I 'm sure he will agree
That this is nothing -
We'll just do it for the certainty.

The specialist was very pleasent,
From Zambia I think he said.
Anyway he pushed and pulled my knee,
And then, with some shaking of his head,
Said, - I'm sure this is just some harmless mole
He even gave it some long Latin name
Which I can't now recall.
Nevertheless he sent me for a biopsy
Because, he said that was best for positivity

When the surgeon saw the mole he smiled and said
Nurse! I think I can remove
This whole thing with the eight mil. punch.
As he did, we talked about the nurse's cat,
"If this is anything, he said, I'll eat my hat!"
And we all laughed,
And that was that.

Some days later finishing my tea,
The phone rang, and I went to see who it was.
A soft voice redolent of Africa asked :-
"Mr Lawton? - About your biopsy."

Time goes by so slowly ...

2010-07-13T21:03:56Z

Rang Jimmy's (St Jame's Infirmary, Leeds) yesterday and spoke to my (future) surgeon's secretary to see if there's any news of my impending SNB, WLE. Pleased to say I'm in the system, and will hopefully get a date by the end of this week. I do occasionally wonder if the passage of time increases the risk, but mostly I'm fine, except I'd like to get this next thing done and dusted. The only thing I can compare it with is standing on the end of a platform waiting for a late train with no indication of when it might turn up.

In general though, I seem to have adjusted to/ accepted my new state. Nothing I can do about it, so no point doing anything except get on with life. Maybe I am appreciating things a bit more than I was, though. The nice day, the pint of beer, even a day at work - and the jolly chat I had with my dentist today :0). And of course my excellent partner, and our brilliant cats!

Ho hum

2010-07-08T21:19:25Z

Ho hum, another day with no call from the hospital. Waiting for a WAE and SNB appointment. The protocol says they've got 15 days, and Jimmy's clinic says I'm to ring and chivvy them (Jimmy's) on Monday(after 7 days), but it's a bit tedious. Had to chivvy them to get my first appt too - amazingly, after I did I got a call back after only ten minutes. What a coincidence :0). Oh well, patience is its own reward - what does that mean?