Tuesday, 19 February 2008

2008 Feb 19th - Seeing the Surgeon (pre-op) and Scan Results?

I had a thorough abdominal ultrasound scan on Monday morning. Having slept for about four hours (aided by Baileys) and many tears, I woke up feeling rotten and not looking much better. Umpa drove, thankfully because I don't think I'd have hit a single right gear, but possibly some pedestrians or other cars! No old ladies waiting today and though we managed to arrive early I was seen pretty quickly. The scan took a lot longer than I thought. I laid on my back and both sides so she could check every organ, spending most time on my lower right ribcage (still sore from Friday nights gym class) where my liver was.

I sort of expected a phone call because Dr Tom had made a point of getting the scan booked so they could discuss me at the MDT meeting that afternoon. Still I had my appointment with Mr A, the surgeon today so it wasn't much longer to wait.

I slept a little better, probably because I had TWO large Baileys this time. Also I'd spoken to Aunty Susan and even though she made me cry a teeny bit, by telling me I don't have to be brave all the time, at least not for her, it helped. A cuddle would have helped more, but I had the teddy she bought me when she came to visit (Umpa has one too, we always get the same, it saves arguments). He's as fluffy as Skittles but doesn't wriggle or keep me awake with his loud, contented purring.

I like going to the Bostonian, there's no messing about trying to find a disabled parking space - there are even less now because of some "work" being done! True to stereotype the "work" men were stood around talking when we arrived. It was proper brass monkey's weather so I'd have expected some movement just to keep warm.....other than their jaws.

The couple who went in before us had a cancer diagnosis, I'm sure. Evidence being - conversation between secretary and nurse fetching cup of water "How are they?" "Not good, very sad". I could hear crying when I went through, at which point the couple hadn't left so I think they were in a side room talking it through. There was the telltale diagram, drawn by Mr A to demonstrate the site of tumour and surgery, a nurse whipped it away, saying "oh that was a previous patient", I just looked at it and said "deja vu".

Poor Mr A, not knowing about the scan results (namely because I don't think the sonographer's report was available for the MDT meting so I wasn't discussed as intended) was surprised that I was looking a little worried I think. He read the CT report, then the incredibly short ultrasound scan which just confirmed there was "something" (insert several large words here that even I haven't been able to commit to memory and google) on my liver. That was it. It just said "yep, you were right with the CT". Mr A said it was stupid! He asked the nurse to make sure I was on next Monday's MDT list to be discussed - but he's not unduly worried. I panicked at this point and said...........but surgery is planned for Friday..........? I think that's when the penny dropped that as Oncology were rushing to get the scans done before surgery I was expecting it to be cancelled. No chance, he said, it's two separate things, he'll do the operation and the rest can be dealt with later. Jeez, talk about RELIEF!

I'm not even worrying about the scans now, my main concern was that my path has been, not set in stone, but pretty tightly set out and any deviation just depresses me. I think it's the lack of control that cancer is so good at creating. That the cancer might be back, or even if, as hoped, it's just damage caused by the chemotherapy (Dr Tom's thought) was like cancer saying "Haha, I'm still in control, you thought it was all over".

He attempted a rigid sigmoidoscope again but (and I checked to see how loud I was) I "OW"d a lot and he asked if I'd rather he used an endoscope when I was on the operating table and unconscious instead (um YES PLEASE MR A!) to make a final check of the join. I know some people have a barium enema and x-ray to check the join but he likes to see with his eyes, I think. It's been 9 months, so I guess if it hasn't healed now it never will. Not ALL the staples came out anyway, I only remember seeing about half a dozen or so (gulp).

Mr A went over the risks and possible complications: bleeding; leaking (peritonitis); having to open up the full 10 inch scar again; blockages etc. Then I signed the consent form, hopefully the last of many in the last year or so. I've signed a consent form for the 7 weeks continuous chemo, another for the 5 weeks radiation, one for surgery, another for the last lot of chemo and now the final operation.

He'll be cutting around the stoma where little PTW sticks out and then (I gasped at this point) they chop PTW off and throw him away!!! He'll then join up the two ends, shove it all inside and stitch me up.

I said: "Oh, the poor thing"
Mr A (laughing): "Have you become quite attached to it?"
Me (patting PTW): "He's worked really hard for 9 months, I swear at him when he misbehaves, but it seems such a shame"
Mr A: "Would you like him in a little pot to keep?"
Me: "Yes please! I've still got my wisdom teeth in a pot and my best friend was allowed to take her tonsils home (admittedly we were about 14 at the time)."

I'm pretty sure he thought I was joking. I wasn't.

When Umpa told my nephew, he said "But doesn't aunty Lisa NEED that bit?" He was also most impressed by the fact, not that I'll not need to glue a bag to my belly every day or so and empty it a zillion times a day, but that I shall, once more be able to FART! I wasn't aware it was a regular habit of mine, but then realised, he's a boy, it's their favourite pastime!

Mr A tried to make us both cry again too. He said all his patients are special, but I am most special. I am his youngest bowel cancer patient! Therefore he is sure everything will be fine.

I told him he can do what he likes when he opens me up because I've got a small windfall coming from a share payout soon. He said he likes to hear his patients are rich. PMSL!

So for now, I'm just excited about the surgery and this last step. If the blips on my liver turn out to be anything else, that's another chapter. As Angela Wan Kenobi once said "I refuse to get excited about it until I know it's really a problem."

I'm working on various options for keeping you all updated whilst I'm in on an IV crash diet of essential fluids for the best part of a week. It will most likely include a laptop, a memory stick and Umpalumpa (told you she was like a Swiss army knife!).

Friday, 15 February 2008

2008 Feb 14th - Valentine's Day - Scan Results

Oo well there I was having had five hours kip and Parcel Force were knocking at the door. Karys went to get it because she looks better than me in the morning. She said it was a box and probably had flowers in it.

Hmm. Odd. I thought maybe it was because I'm getting my scan results today someone has sent them.......nope. Turns out it was a dozen pink roses, some chocolates AND a bottle of champagne. Confused? Certainly. There's not even any point in me being curious because hardly anyone has my new address. Not to mention I don't know anyone who'd spend that much money on me especially to get nothing in return since I don't know who sent them. Still they all went down very well and were much appreciated though a little premature. Not knowing my results I wasn't ready to celebrate yet.

Umpalumpa drove us to the hospital and by some fluke we got a disabled spot near the entrance so I didn't have to hobble so far (note how I can run the five feet to the front door when I think my ipod is about to arrive but that's about it). Clinic was running a bit late so I didn't get seen until an hour after my appointment time. It was the big man himself, Dr Tom. He thought I was just there for a check up until I said I was after my results. We had a look at the images and he pointed out some streaky bits on my liver. The report (not their usual radiographer) mentioned "suspicious" areas on my liver.


Still Dr Tom says if he were betting on it he thinks they're just changes due to chemo and not actually cancer deposits and he's seen enough to know but I'll need an ultrasound scan to be sure.

If the ultrasound comes back clear then I still get rid of the little monster that is PTW. He's developed a hole which means output leaks right at the base of the stoma and damaged the adhesive seal so I pretty much have a leak every time I go to the gym, go shopping, drive etc.

Dr Tom rang me this morning (Friday) to say he was trying to get my scan booked for Monday morning so they can review the results on Monday afternoon at the MDT meeting. I'll be seeing my surgeon on Tuesday anyway so the latest I'll hear about anything is Tuesday.

I still downed half the champagne - Pob came round since we're both single and had no dates so he drank the other half. We started with kebabs and beer......and finished with Baileys coffee!

We toasted the fact that I might NOT have metastases on my liver.

Keep em crossed for me eh?

2008 Feb 11th - Pre op checks

I had my pre-op check appointment at 11.30 on Monday this week. Luckily I managed to drag myself out of bed early enough to get there on time, always a bonus. I did forget to take in a urine sample though, but that's because I forgot to get a sample bottle.

The nurse called me through and we went through the questions I'd answered on the admission form, basically to check I'm not asthmatic, have heart problems or anything that might cause issues with anaesthetic or other drugs as I did back in June. I'd listed all the drugs I'm currently taking (four at last count) and the doses. After the paperwork was done and I'd answered the comedy questions "Are you seeing your GP about any serious illnesses at the moment" - "Na, just anything cancer related - that's all I've ever seen him about".

I was weighed and my height measured. I've got my centimetre back!! I'm back to 5'10 again and 178cm. I'm guessing that's because I don't have back pain and am not as exhausted as I've been when I've been measured before.

While we were chatting about my side effects that I'm still stuck with, the nurse seemed a little surprised by my matter of fact attitude, she asked how I cope? She thought I was very brave. But I didn't set out to get cancer, I didn't choose to deal with it so how can I be brave? What option do I have but to just get on with it? I'm guessing most people she sees with cancer are older and dare I say more negative or better at moaning about their lot. Most likely because they have other health issues and were hoping to have some free healthy time to enjoy their retirement. She actually had to grab a tissue and grab her eyes, so I apologised for upsetting her (!) which didn't help.... I suppose I'm so used to all this now and I know from bitter experience that the more you repeat the details about something distressing, the less emotional you become when retelling it.

That's why I like writing these blogs because my initial emotions are captured and people don't get the wrong idea about how bad or good things are.....well some do but I can't have everything can I?

I managed to produce a sample of wee which showed signs of infection (bloody marvelous) and then it was time to take more blood. As if I haven't had enough blood tests lately. As my latest PICC scar is still a good half centimetre across and red I suggested my poor left arm where I can pretty much see most of my other test scars, tiny pits. First attempt - it hurt a bit and not a lot happened............same arm, different vein, much fist making and arm tapping to encourage my shy vein - no blood. Not enough to test anyway and she needed a few tubes filling. I got a bit queasy at this point - it was 1.30pm and I was thirsty and hungry and poking in my arm isn't the best thing in that state. My blood pressure had shown it was still on the low side so I had a bit of a lie down on the bed and a glass of water while a different nurse came in and opted for the first PICC vein on my right arm which bled like a stuck pig. At last! After a cup of tea and another reminder of what would happen, or at least what we hope will happen next Friday I went home to see if my parcel had arrived.

NO parcel.

I doubled checked the UPS site, but it still only said that it had arrived at Nottingham UPS in the morning. A van went past and I ran out the front door.....it wasn't my delivery.

A little later a UPS van drove by........again I ran out of the front door. About five minutes later they came back - I was right there, the driver didn't need to get out of the vehicle!

My ipod Touch 32GB had arrived to replace my 40GB ancient brick of a 3rd generation ipod photo. Bless it, it has done me proud for a good few years since I got it one bountiful Christmas but having played with the iPhone in a local shop.....I'm afraid I was sold.

I've been sending emails, surfing the net, playing games, all whilst listening to music. It's got google earth maps on it and I can plan routes and get directions and EVERYTHING. It's bloody gorgeous. I don't even have to worry about the expense because I'm getting a teeny windfall next month so it's covered. The children will still be fed.

Wednesday, 6 February 2008

2008 Feb 6th - CT Scan

(In which Lisa manages NOT to faint like last time 13 months ago...................)

I had some very weird dreams last night. I'm not sure if it was because I watched the first episode of Lost season 4 or just because I knew it was scan day today. I say weird dreams, it was more like just the one dream which carried on even though I woke up a few times in between. Something odd where some bloke had disappeared but managed to take a symbol that belonged to a girl - it was like a badge or pendant or something but was official, not pretty jewellery. Anyway, at the time I was sure I was just dreaming about a film I'd seen and was replaying in my sleep so didn't pay much attention (in my sleep). The badge thingy with the symbol on was his saving grace because no one could see him and he couldn't contact anyone until he realised if he shone a torch through the badge thingy it illuminated the sky with the girl's name and some logo. That gave them hope to carry on looking for him and involved creating a decoy around some dangerous waters where he swam to safety!

No, I can't read anything useful into that dream either, don't bother trying.

Maybe it was Fat Tuesday's pancakes that made me dream...........I had lemon and sugar on mine and Karys had lemon scented honey. Unfortunately I ran out of gram flour (just that and water make low cal protein pancakes) so had to resort to the egg, milk and "ahem" brown rice flour! No, I still haven't bought any wheat flour after last year's "Starve Tyson, feed Lisa" diet. Anyway they were yummy.

Woke up feeling nice and cosy warm this morning before the alarm went off, but then wished I'd got up BEFORE the alarm went off because when I did lift the duvet, I realised evil PTW had sprung a leak during one of my dozes. Great. Perhaps he knows his days are numbered and just wants to go out with a bang...........? Thank you whoever invented incontinence pads for beds.
Actually, strike that. Thank you to whoever came up with the idea of producing a stoma to avoid certain death or a life time of pain (for those with non cancer related ones).

So to the scan. Umpa arrived in time for a swift coffee and catch up on emails (no broadband yet at Umpa Towers....ah sorry I forgot to mention the lack of blogging may have had something to do with her moving house last week). Had to hotfoot it into the disabled loo while she parked the car, since we drove round and round the disabled parks but they've dug half of them up for some reason so NO spaces there. In the end she had to park the furthest distance possible from the outpatients entrance. Typical. By the time she found me, she'd already whizzed round to CT reception looking for me (I'm slower than I thought).

Lucky me, I sat next to an older woman. She greeted me, now with a cheery "Hello!" but with

"I don't know WHY they get you here so early if all they do is make you wait".

Me: Well you'll be having several hundred pounds worth of scan, you want them to get yours right don't you?

Woman: A hundred pounds!

Me: No, several hundred pounds. They can't plan for everything, once when I had one I passed out so I know that must have held the next patient up, but these things happen. They don't always know how people will react to the drinks and dyes.

Woman: I've got a stone and it's getting bigger. I had an x-ray but I thought they'd DO something about it not send me for scan.

Me: Oh right (losing the will at her poo pooing a VERY expensive and complex diagnostic tool)

Woman: So why have you had scans before?

Me: I'm a cancer patient.

Woman: (imagine blase tone) Oh I've had cancer. I had breast cancer, what have you got?

Me: Bowel cancer.

Woman: They took my breast so I have to wear a falsy

Me: Well, at least you still have all your internal organs, I think I'd probably rather lose a breast than everything I've been through. (Yes I think I was a bit harsh but it's how I feel and she was treating me having a scan to see if I still have cancer in a very trivial manner, plus her skin was thicker than a rhinos)

Nurse calls me through to check details and that I'm fit to scan...............

Nurse: Would you like to come this way with me?

Me: Yes please, ANYTHING to get away............

Nurse: I'll show you where there are some other seats you can sit in peace.

Woman: Hmpppf! My appointment was 2.15!!!

Umpa: Yes, so was my sister's.

Woman: So, are YOU fit then?

Umpa: As far as I know, yes.

Strangely, as ever the next couple into the waiting room were chatty and good humoured. This despite the poor woman having polycystic (something) i.e. she has cysts growing everywhere and last time drained 8 litres of fluid that had collected in her abdomen. They grow inside all her organs which is probably about as shit as having tumours grow everywhere. SHE was grateful to be alive and her husband was pleased she was still being cheerful despite everything she was going through.

Why is it some people have to moan and whine their way through the day and others just get on with it? I'm pretty sure I've been good humoured at least 90% of the time and only let people know how bad things were approximately 1% of the time, which leaves about 9% of whinging and whining. This blog doesn't count by the way - well it's part of the 1% and of the 9%.................!

I'd like to say I felt like this scan was "just a formality". It isn't. Whilst I can pretend to be outwardly confident over the results that I will be NED (no evidence of disease) it doesn't mean diddly until the Lone Ranger tells me so next week and I can have that operation to shove PTW right back inside where he belongs. Before I know it I'll be back in to see him for my next 3 monthly check up on my blood results.

Ha, speaking of the Lone Ranger, remember last year on Valentine's Day............when he was busy shoving a 53cm tube into my right arm for the FIRST time? Well I get to see him on the 14th again this year too. He'd asked me to pop into the chemo suite so they could let him know my scan was done and Ray handed me the appoinment and pointed out it was a leap year.............

DON'T go buying any hats. Honestly.