crushed or not?

yesterday was one of those stupid stupid days. I had a brilliant morning, attending the RD&E Cancer Services User and Carers group. It was interesting. Users basically means 'patient'. And we are able to contribute and give feedback on our local services, in order to try to improve the overall service that the NHS gives. A good idea - but rather complicated to implement.

I left the meeting in high spirits. Got home to my Tax return - shriek! I have a lot of tax to pay from last years earnings, even though I have paid half in advance and have earned hardly anything since December. This is called 'payment on account'. But it seems I can call the tax office and arrange interest free payments over a period of time. Guess what I'm doing Monday.

Then I checked my email to see if anything had come of the interview of the day before. NO. Nothing. Nada. Grr.  I went into a sort of tailspin. Cried all afternoon. Too many bad things happening for the last two years - gets exhausting although 99% of the time, I am positive. But it just felt like I was about to be crushed flat by circumstances. Couldn't wait for the FH to get home. He's a calming spirit. So the evening was an improvement.

Then today I went for my mammogram - turns out it wasn't one at all. It was a physical check up and chat. Ok. The mammogram will be scheduled shortly. But the check up did my head in, as she asked 'what were my thoughts if I were genetically predisposed to breast/ovarian cancer'. Oh. Right. Lots of thoughts - most of them starting with a loud scream!! Goodbye Zen mode.

After having a BRCA gene test performed, you learn whether you carry an inherited BRCA gene mutation and receive an estimate of your personal risk of breast cancer and ovarian cancer. Then [and this is a very basic précis] you decide whether or not you wish to have a double mastectomy and rebuild right NOW, or wait until you get breast cancer and decide then. FUCK!!

Well. Sorry - but that's not in my Book of Things To Worry About This Week. So we decided we'd discuss this next year. Apparently I can have the gene test any time, and it will only be one week until I get my results. Hmm.

And yes, I spent the rest of today in a cold sweat. Usually the specialists judge this on family history - but as I have no reliable information, they have to start with me. It's scary. But I am not on that pathway right now. I feel that my control mechanism of having the check ups, the mammograms, etc. is enough for the moment. It gives me a sense of control - and IF anything goes wrong, ideally it will be caught soon enough to avoid a mastectomy anyway. God. What a thought.

Makes me feel sick. But I am actually considering having the gene test - because I have two brothers which it may affect. I hope not.

After this, I visited a dear friend on the upper floor - he was in agony when I arrived, and I had to leave quite quickly. Bloody day of gloom for sure. Hopefully things will improve all round next week.

So not the best week!!  Although today was 26 degrees - a gift for sure. We had a bbq on the patio. It was lovely.

update part 01

First thing is, it's GOOD news! Second; this will probably be a bit fragmented. I am still full of anaesthetic and pain killers. So I will write between sleeping. I have to walk about a bit, as much as I'd like to stay in bed all day so trundling up and downstairs to my office seems good exercise. Just have to go slowly. So many people have asked for an update, and here is the easiest place to tell everyone all in one go. Between nodding off!

Yesterday. We arrived at the hospital at 8.00. My surgery was scheduled for 3.00. No eating after 7.30, no drinking after 11.00. The Ward Nurses were not happy; I could have gone in at 11.00, as it was I sat in the waiting room for 4 hours before they could put me in the Day Ward. Then another 3 hours in there. Happily I met a lovely woman and we chatted all morning, so the time went quite quickly. She was on the same schedule as me, except her surgery was at 1.30.

Yawn. Time for a kip.

In the Day Ward we got into our hospital gowns [a new, sort of oriental design that covers your butt – thoughtful!] and the snazzy white DVT knee socks. There were 10 of us all sitting next to our beds. It seemed confusing as there were two women supposedly first on the list. Hmm – then a major frenzy occurred at about 12.30. Anaesthetists and surgeons descended upon us like locusts! TWO surgeons. Good. Two lists. I was third on Mr Renninson's, and my time moved from 3.00 to 3.30.

I saw the Anaesthetist, Dr John Saddler, first. As usual, a wit. Seems to me Anaesthetists are always pretty chuckalicious chaps. Then I saw Mr Renninson, my surgeon. He ran through the procedure, we discussed the book I am reading as he is reading it too, he got me to sign the release forms and told me he would come and tell me what he saw as soon as I was coming round. He said if he didn't see anything cancerous, he wouldn't bother with a biopsy. Aaargh! What? So I asked him to PLEASE just do it anyway, as he would be in there rooting about, so why not have that extra assurance? He said he'd see, and he also said I am his favourite patient!! That was nice of him. He is for SURE my favourite surgeon!

Sorry, I am not getting far fast with this – I started at 8.30 and it's now 12.00. I keep wandering off. I have managed to sleep a bit and do some washing in between. And eat more painkillers. And I am now going for more sleep!

Right – where was I? Oh yes. So, off I went to surgery, actually at 3.15 – managed to see the FH, who popped back, but only for a minute. I came round about 40 minutes later, and I am sure it was 2 minutes after that that Renninson shot into the room, beaming his little head off and informed me he couldn't see ANY CANCER!!! Then he rushed off again with the promise he would see me later. Whoosh!

He had a Noddy hat on?! A red and blue striped beany. I will never forget it.

I couldn't believe it. I burst into tears which promptly threatened to drown me, as I still had the oxygen mask on. And that is the best news we have had for what seems like forever. I just wanted to rip the mask off, find the FH and tell him. I did manage to give him the thumbs up as they wheeled me past him on the way to recuperate in the Day Ward. His little face was a picture – I'll never forget that either.

More details later. He had to do a bit of chopping and slicing. I have pictures!! And stitches. Ugh.

I will still be a LITTLE worried until I get the biopsy results in a few weeks, but Mr R is pretty reassuring. If he says no cancer, well…I am 98% there. More sleep now, as everything is rather hurting. But I am The Bomb!! No cancer??…woo hoo!

MRI; next stop

I don't think I was particularly clear about what is happening in the last blog post. But then again, I wasn't feeling very clever at the time, so there you go. My girls have been asking questions that I thought I had answered. Well, I hadn't. Looked over the last post and noticed LARGE gaps in the information. Sorry. Brain is mush.

What happened is this: CT scan in December. Couldn't go to Portugal to work because of that and family commitments. Then I lost my contract because I couldn't go. Uff. Seems that cancer can cause all sorts of BS that you never consider. Until it happens. Well, there you go eh? Life goes on…I will find other work.

Then the CT scan came back with 'something' on it. [I begin to hate the word 'something' AND the New Year]. I went into the RD&E to meet Renninson [my lovely surgeon]. He came in especially to see me just before Christmas. Nice or what?

Anyway, the meeting went thus: 'I have seen something on the scan that looks like a 'thickening'. It needs to be investigated. I don't know what it is, but there's a 50/50 chance it is either scar tissue or a recurrence. Before we go down the road of more chemo, I want to see what it is'. Me: Swallow [chemo? again? fuck!]. Aj: freak out. He heard 'it is cancer'. But we sorted that out. I love my husband – he is so involved with me. And I hate that he has to be. It takes things from his life. This is so unfair to him. Do ALL cancer patients feel as guilty as I do?

So, the next steps are: tomorrow, the MRI scan. I understand this to be a pre-op measure – so Renninson can see what is going on in there. A PET scan was out of the question, as he said it would merely show up a 'hot spot'. This would not tell him whether it is cancer or not, so no need for that. Ok. But at least I had the info to ask the question – thanks Nat. Then the pre-op meeting. Then I will find out when the surgery will take place.

The other thing Renninson will do [I am trying to be CLEAR here] is to try to find out what is causing the pain on my left side [although, thanks to Senekot, that seems to be receding]

Bugger. And yes, I could curse a LOT here. grr. But I won't. I will keep the Zen brain I succeeded with today…THIS IS BETTER.

Sort out the office [where I am sitting right now in  the midst of a ton of stuff!]. Clean the house. Look for work. Get on with it. Ok.

Good fun this isn't it? But at least two good things happened today – the car is fixed [£100.00] and the front window [which some prat smashed while we were away] is fixed too…

woop!

update

I get such good service at my hospital. Actually I just learned today [from John Renninson] that they have been named a Centre of Excellence for Gynaecological Cancer. So, I am very glad I live in Exeter!

Right – what happened. We had a bacon and eggs and toast and coffee in order to be fortified for the meeting. I felt like going in my dressing gown. But as it's 3° out I thought better of it.

We met Renninson, who had come in specifically to see me and have a chat about the Scary Scan Thing. I am not sure why, but all the specialists were wearing striped shirts and striped pants. One had on a bright pink waistcoat and looked very designery…with a little goatee no less. Very festive fellows.

Renninson said that they can see something on the scan, what appears to be a 'thickening' where they had to [his words] "rip the tumour off the things it was growing onto". Ugh. So it could be scar tissue. Or it could be a recurrence of the cancer. But his odds were 50/50, and that's really good coming from him, as he always errs on the side of  caution. Worst case scenario is that it's a recurrence. Best case is that it is scar tissue.

The plan is that in January I will go for another MRI scan. He discussed doing a PET scan with me thanks Nat!], and isn't keen on doing that, as he said it shows up 'hot spots' but it still wouldn't tell him for sure whether or not it is cancer or scarring. So, a pointless thing to do in my case. And I would rather have less scans if possible, so that's ok by me.

So, the MRI; then we will have a pre-op meeting [where I get to see all the scans, yippee], compare the scans, discuss what's going on and then he is going to do a laparoscopy. Yay – 'minimal invasion' sounds good to me. He will put the laparoscope in through my belly button, then another one [or two, depending on how he gets on] lower down in the abdomen. The difficulty he may have apparently is because I have had such major surgery, there may be a lot of scar tissue getting in the way. Lets hope not.

He will then take a sample of whatever it is [the SCAR TISSUE!!] for a biopsy. So, if all goes according to plan and no bowels get punctured etc. I will be in and out in one day. Then we will know what it is [scar tissue!!] shortly after. Renninson was quite nonchalant, and said he doesn't know what it is, but if [worst case] it's a recurrence, WE will deal with it. Cool.

We will. I think I startled Renninson rather, as I gave him a big kiss. Well, he is saving my life :o)

We both felt MUCH better after the meeting, raced off and did a fun last minute Christmas shop, then went for tapas and wine at La Tasca. Then we came home and I had a zillion photos taken by the Times photographer. I think it's going to be in tomorrows paper!

the 2nd CT scan

Aaaargh!! What  a day! 7.00 – up and at 'em, nerves. 8.00 – a pint of water with some gastrografin in it. 9.46; email from Cinca. Stop eating at 10.45. 10.31, 10.37; email from Cinca. Another pint of gastrografin diluted in water at 12.00. It tastes DISGUSTING. 11.44; email from Cinca. But apparently it makes the bowel appear much clearer on the scan. So, bring it on. Well, in hindsight, it was ok – but while I was drinking it – er, no! Yuck. As well as making the bowel beautifully visible on the scan, it also 'disturbs' it…ugh. Running up and down stairs a lot.

Arrived at the RD&E early, and [shock horror] I went in straight away! This is not normal – I put 3 hours on my parking ticket just in case [£3.00]! But I was in and out within one hour. The chap whom I gave my parking ticket to when I left was delighted.

14:30. Logged in at reception. Told the woman I was starving and it would be excellent if she hurried it up. She obviously took me at my word. Into the little changing booth, off with the clobber – all jewellery has to be removed. Anything metallic is a no no. Everything goes into a shopping basket which you then haul about everywhere. I absolutely HATE taking off my wedding ring.

Into the HIDEOUS hospital gown. WHY would anyone design a gown you have to walk about in public in, so that your ass hangs out the back? Fired. Then another revolting drink of something. Not quite sure what, but the chap in HIS hideous gown next to me raced me to drink it [yes, in hospital everyone goes a bit mad]. I was grizzling and pulling faces. So he decided I should just suck it up. And I did. He went first. I told him to hurry up. He did.

Then in went the catheter at my elbow. I was well chuffed! No searching for veins in my right arm any more. They appear to have recovered. yay! But it still hurt. 'A small scratch'? ha. A 'STAB' is more like it. Bloody nurse sense of humour….Then an explanation of the whole thing – I had a CT scan last year, but as it was an 'emergency' scan last time, no-one explained anything – they just jammed me into the machine, did what needed to be done,  and threw me out the other side. This was much calmer, and it's nice to know what to expect. The catheter is for the last lot of 'stuff' that shows everything up well on the scan.

Whatever it is they inject into the catheter – well. It's weird! It's a contrast material, introduced to the bloodstream during the procedure. But it makes you all hot in strange places, and the funniest is that it makes you feel like you have wet your pants! The first time round, this is awful – the 2nd, not awful but still a tad startling! Slightly chuckalicious, as you know it's coming?

Then – hold your breath. In the machine, out again. Inject the contrast material [feel totally mad]…hold your breath…in and out blah de blah. Then rip out the catheter and off you go. With a great lump of that bloody awful sticky tape they attach the bandage with..I don't like it. It gives me blistery things. I rip THAT off poste haste. And it hurts! grr. But better than all that blood going everywhere. Lots of blood jumps out of my veins after they remove the catheter. It's pretty gross.

Straight to the nearest food! Having been starved all day, plus the contrast material makes the mouth taste dreadful, a spicy pork pie was just the thing. Then home again home again jiggety jig…

Now just to wait for the results. Oh, and find a job…what fun!!

here's the CT scan machine thing…that would be me, except they didn't put a large brown blanket over me. I am rather glad they didn't, as it would have hindered my escape! Never a good thing ;o) Not to mention it makes the person look like a corpse. Not quite up to looking like that quite yet thanks!                                

yay – result!

Check up day – what fun [not]. Off to Exeter. Parked near the solicitors…you can only have up to an hour there, so that was perfect.

Wandered into the shops and had a mental aberration in Warehouse. Bought stuff [as you do IF you aren't looking for anything, which I wasn't – well, the shoes apart]. Looked for the shoes.

Well, the shoes were a BIG failure. After racing about Exeter town centre looking for the Kirk Geiger shop [and not finding it], I resorted to the iPhone and looked it up on the www. Oh yes…it was in BRISTOL that I went into that shop…stupid chemo brain. So, no shoes. YET!!

Then Aj rang and said he was home, so I went to pick him up to go with me to the RD&E. Thank goodness I did. The parking was a complete and utter nightmare. Aj dropped me at Force and went to try and park. I dropped the collection box in and got a new one. Everyone seemed very excited by the weight of the box. I also got some Christmas cards. Then went to find the DH. He passed me in the car, waving his arms and legs in hopelessness of ever finding a space. I merrily left him to it and went for a cup of coffee in the waiting room.  WAITING being the operative word! An hour late! Oh well.

Of course, as soon as I got really stressed and raced outside for a cigarette, I was called. Raced back in and assumed the position.

Right – First thing, the CA 125 is 8. Yay. Up 2 from last time but not actually 'up'. Relief there. Although I do understand this is not definitive, it's still a nice little control mechanism for panic.

Next; regarding the pain I have been having. Initially I had a dull pain under my left ribcage, almost straight after the surgery.  That has remained constant. And I don't worry about that. Maybe it's a scalpel or a hat that someone forgot. But for the last few months [since my last check up] I've had a new, more painful pain that runs down my left side just inside the hip bone. The last few weeks it's been going down my leg too. NOT conducive to cheery thoughts. Renninson said it is the large intestine, or bowel, and apparently it's backing up? He can feel it, and shouldn't be able to.

Charming. A 'backed up' bowel? Eww. It seems I need to drink MORE water, and eat MORE fibre. Probably linseed oil. Which I always thought was for cricket bats [all important task of applying Linseed Oil to your bat...don’t forget the toe!]. Renninson thinks not. It's for bowels and I should have it at breakfast. Sounds suitably repulsive, but I shall try it.

And he's sending me for a CT scan. Result. So now I can chill out [between scoffing fibre and guzzling water and linseed oil] until the scan results. Hoorah.

check up time again…

why are we so nervous nearing the check up? we/I should be jumping for joy. It's just a confirmation that we are well. Right? No. It's a test to see if the cancer has come back.

The last few weeks I have been worrying a lot. When I initially asked Dr Hong HOW I would know if I had a recurrence, she said that I would probably have the same symptoms as I had in the first place. And that it would probably recur on my stomach IF it were to recur. Oh joy. They were hardly 'in your face' symptoms were they? A swollen tummy, a lump in my groin, extreme tiredness. Well, I have the extreme tiredness again, that's for sure. And it worries me. Plus, apart from being exhausted, I have a lot of strange pains in my stomach – these are apparently 'normal'. After massive surgery like I had, you get pains. Adhesions etc.

Whilst in Portugal I rang the oncologists secretary in tears – she said better to wait until your appointment. So, I will.

But normal?? What is that?? Tomorrow I have to phone and book myself in for my bloods. I should have done it today. But as usual, I leave the important things to last.

To my detriment.

what a day

Arrived with Julie at the Oncology department, and the first thing was, they didn't have our details anywhere. Hello heart failure…but they soon found everything and off we went to the waiting room. Waiting…waiting..and MORE waiting! Bugger. They were 1 hour behind. Sitting there feeling sick. Eventually Julie went in, and came out with a good result - she will be scanned soon, and as it's near her 5 year mark, that seems sensible.

Off she went to the pub to wait for me. I was an age…but everything went well, and as I came out, Aj arrived to pick me up, and off we went to the pub to meet J and celebrate our brilliant results, PLUS Julie's birthday!

Brilliant - my CA 125 is back down to 6. Last time it was 9 - mine seems to nip up and down between 9 and 6 so I am very happy. Dr Hong was happy, Aj was happy and life is good! The norms are 0 – 35 (μg/mL).

Today I discovered something that I was 'sort of' aware of, but didn't really take much notice of as it doesn't apply to me. But since hearing my friend MA's story, I took more interest. MA's CA 125 jumps about all over the place – but this may be the reason for her not to worry too much.

The CA 125 is a marker. [well, it's also a Chinese aeroplane, but there you go…]. It can be the harbinger of a recurrence of ovarian cancer if it suddenly shifts by more than 20 points. But for example, my tumour was leaking CA 125 into my system before surgery. Many tumours don't. If the tumour isn't leaking into the system initially, the CA 125 isn't very reliable as a marker afterwards.

So before my surgery, my CA 125 was 1149. After surgery and before the first session of chemo it was 161 [25/03/08]. It went down to 30 before the 2nd session of chemo [24/04/08] – it was 7 before the 5th session of chemo. Now it is 6. Last check up, it was 9. Therefore, my CA 125 levels are a pretty reliable guide to what is going on with the cancer in my body. Right now it seems there isn't any. YAY!!

Dr Hong was quite concerned with the constant pain in my side. But she doesn't want to scan me yet, as I was pretty much blasted with radiation last year [sound scan, cat scan blah blah]. She seems to think that as my CA 125 is steady [i.e.: it is following the same constant pattern it has since the outset], and I have no other symptoms, that we can wait until November [next check up] and see where we are. Even if it was a recurrence [which it bloody isn't!], 4 months would make no difference to the treatment/outcome.

So. I am now cancer free for another 4 months! Phew…we are totally exhausted, and both off for an early night - good news is great, but waiting for it? Aaargh…

the day before 'The Check Up' – screaming. quietly…

what I have wanted to know for a while is this: WHY do we get so distressed about having this check up?  And I think I may have discovered the answer.

Weeks before, I am thinking about what 'could' happen, what 'might' happen – the worst scenarios and the best. Plan A and Plan B. [gotta have those – control, control…]. And I know I am not alone in this. At first I thought I was, but now I know better.

EVERYONE who has had cancer [any kind – oh, and how fun that there are so many varieties of this fucking disease!!] that I know, freaks out in the weeks preceding The Check Up. It's odd, as as soon as I walk into the Oncology department I am totally Zen. I have a comfort zone there, as they are the people who saved my life, so if they did it once, in a worst case scenario, they can do it again. So, once I am there I am calm and totally 'in the zone'. Am I naive? Am I stupid? Or am I realistic?

But Aj put it completely into perspective for me when he said that actually, this is a 'life or death' appointment. And he's right.

It is life or death.

And that's scary. I never really managed to think it through until he said that, but I think that's actually what makes us all into quivering wrecks. And please, anyone, correct me if I'm wrong here. But for me, the [almost] subliminal thought that 'this time' could be the time that they tell you it's come back. That bastard cancer. That sneaking, murdering, hideous little cell that could kill me if I let it. It could be the day that I discover I am going to die of this disease. Soon. And in pain. Probably in agony. It could be the day that I discover I have to have more chemo. Or some new treatment. Or more surgery. Or that they can't do anything more for me because I am terminal. Or anything.

It's a screaming unknown. And we go into it screaming. Quietly. And hiding the screams with laughter or chatter or blasé remarks. Trying to be POSITIVE. BEING positive.

But the screams batter round your brain….echoing hell. A hell no-one can see.

How positive can we be?? I know I try so hard. It takes almost all my energy. Day in, day out, trying to just keep a cheerful face on…and I know my friends do too. But what if the surgeon / doctor / oncologist gives one that bad news? How strong do we have to be?  How strong CAN we be? Do we have to just carry on 'being positive' because friends and relatives expect it of us? Or is there a point we reach that we just say: "no, enough"…

I hope I never, ever have to find out.

Frenzied plans and feeling jumpy

22 July 2009

On Sunday I arrived in Portugal for a weeks work. This is a normal event and was planned well in advance. But I had no plans to return in August, as August is the month that the tile industry 'goes to sleep'. Usually most of the staff is on holiday, the kilns are shut down for maintenance and there is a skeleton staff running the factory. We tend to try to get ourselves organised which usually involves deleting and filing zillions of things that seem to get all over our computers and desks during the preceding months.

But this year, it seems I need to be here [Portugal] in August. But unfortunately I have already made plans and with only two weeks notice it is not possible to change all of them, and difficult to change some of them. The plans are all on the weekends apart from one weekend, which is the week of my 4 monthly check-up [SHRIEK!!] on the 11th.

The other weekends all involve people arriving and staying at the house. They have booked holiday or bought train tickets, bus tickets etc. and there is no way I can change those dates without letting a lot of people down. And I don't want to anyway. Miss the ''Annual Famous For Hangovers Cocktail Party''? I don’t think so!

So the only remaining thing I COULD change was my oncology appointment . That would free up the week of the 9th to the 15th so that I could come to Portugal [unfortunately the flights are Sunday to Sunday or you walk].

Uff - NOT something I particularly wanted to do, as I didn't want to make it any later, and so far I hadn't been thinking about it too much. It was, after all, 'weeks away'. But I had to at least try to free one week in August, and that was the only solution. So I rang the oncology department. They wanted to know why I needed to change it, so I explained. The woman I spoke to was so kind! She found an appointment 2 weeks AFTER my current one, and when I said I would get far too anxious waiting longer and may end up in prison for some violent crime, she seemed to think that was quite normal and acceptable, and hunted about further. Whilst all this was going on I was feeling sick and panicked. I didn't want to even think about that appointment right then, let alone phone up and change it. I was sort of hoping it would be impossible.

After some rummaging, viola! She came up with an appointment on the 28th July. Yay!! I think…Ok - but what about my bloods? I am supposed to have them done a week before, and I am in Portugal right now, so that's impossible. Nice Oncology Person said not to worry about that, just get myself down to the outpatients on Monday, they will do the bloods and process them for Tuesdays appointment. So, the plan is now to get home at 12.30 on Sunday night from Portugal. Jump up Monday morning and race to the Outpatients in order to get seen as soon as possible - I don't fancy sitting there for hours, as the girl are down Monday and I want to see them before they go home. Then Tuesday, The Dreaded Check-up!!

All rather rushed and making me jumpy. After I finished reorganising the appointment I was completely drained.

The good things about this are:
I have hardly any time to worry about the check-up
I am here with Julie, [she’s on holiday!] and her appointment is the same day, half an hour before mine, so we can worry together
Aj doesn’t have to put up with the Post Check-up Panics and Touchy Behaviour :o)
The sooner it’s done, the sooner I will know I am cancer free for another four months

The bad things are:
I AM STRESSED ABOUT THIS AS USUAL!!!

Better for everyone to stay out of my face this week that's for sure. I am head down and working in the day, and chilling out with Julie in the evening, and Aj checking up on me by phone. Roll on Tuesday evening when we shall all be at the pub celebrating!

In the meantime, I am in a bad mood. And nervous. And pleased that this time next week it'll be done for another 4 months.

I hope.