Monday, 31 March 2008

25.yo-yo woman

Monday March 31st:
Hmm – being a bit lax with this blog I’m afraid. The last few days since the oncologists visit have been a tad yo-yo like. As in: one minute I was cheerful and positive, the next I was hopeless and miserable. One of the girls told me she doesn’t do ‘ill’. Well, I agree, as it’s a pain in the butt, but I usually don’t ‘do’ crying either. So imagine my surprise when on Wednesday I started crying at every little thing and couldn’t stop, or think what was up with me. Managed to keep this mostly under wraps, as Aj is back at work, luckily for him. Pointless to talk to anyone about it either, as the conversation would be: ‘so, why are you upset?’ answer would be: ‘I don’t bloody well knoooow’ ...dissolve to dramatic snivels in the vein of Tarantino. Hmm. Not constructive. And “are you ok?” leads to the reply [grumpily and ungratefully delivered] of “no, of course I’m not!! Whadda YOU think??” . Work went totally sideways, with 2 days spent doing a load of rubbish. More crying into the keyboard.

So by Thursday night this was sneaking [or rather, stampeding] into the general household domain. I was shopping for wigs on the internet, Aj came along to try to help me, and was thoroughly ill-treated [verbally! don’t worry, I am not an axe-murderer quite yet]. With his normal fortitude he kept coming back and trying to get through to me, which eventually he did. So we had a sensible look at the wig site, decided that the colour tabs are totally pathetic and that it would be more sensible to go into a shop and see some. Sunday’s little job. OK!! Good, now I have a plan, and that seemed to calm the old brain down a bit. Also worked out [much to my amusement] that having no hair for about 10 months will save me about £800.00 in hairdressers, shampoo, product etc. Cool!

I think that in the panic over going for chemo, I forgot that I am still recovering from massive surgery, a sudden menopause and a lot of shocking information, and was trying to be too normal. Er – this is stupid. I think that on Wednesday, the shock wore off, and everything just crashed down in my mind – plus I am sure my hormones are in league against me. Little creeps. What next. Plus I forgot all the good things. Stupidly. Again.

On Friday I’d got back to the point I was before all this self induced drama. I.e.: back to seeing the positive side of things and realising how lucky I am. Thank goodness for friends, and family and mostly for Andrew!! At least we have one sensible and sane person in the house. Friends from Oz arrived in Exeter on Sunday morning, so that was also a real boost, as one of them has a brain tumour of many years, and they were both really encouraging. Thanks! Morale city here now. Plus of course Tracey pointing out a few things which were really helpful and Mum phoning every day [this is to check I am still at large and haven’t yet got myself a prison sentence I think]. So, after seeing our friends, we nipped off to the wig shop – it was closed!! Incredible...all the best laid plans and all that. I swear it’s the only shop in Exeter not open on a Sunday. So that trip will be on Friday now, on the way to the pre-assessment for the first lot of chemo. But at least I know what I am doing again now.

Think I did a bit too much walking yesterday as well, as yesterday afternoon I was exhausted and my poor stomach was killing me. This morning it feels like ‘stiff muscles’, so I think hills are a bad idea for a bit. Now I intend to do at least one little walk a day, as the evenings are lighter, and Aj can chaperone me. I am still a bit concerned about trooping off on my own on foot, in case I fall asleep on a bench somewhere and get hauled away as a vagrant. It’s pretty odd how they do a slash, sew and off you go thing. No check up for seeing if the scar is healing well or if everything is ok etc. Anyway, we had the first BBQ [braai for you other lot heh heh] of the year!! Fantastic!! Summer will arrive at some point we hope, but yesterday we sat in the garden and it was brilliant [picture this: me, with a blanket over my knees?? hahahaha]. Had a few glasses of wine and an early night, and appear to be right as rain this morning apart form a bit of an aching feeling. I am now off the painkillers completely, but might munch one just to get past this.

Phew. I can now relax, get back on top of my work [after a lot of file deleting] and get on with wig buying, chemo and getting better. Good thing for me that I can work any time. I suppose this might happen again, but at least I am forewarned now. I think I just need to take even one positive action, and it helps a lot. Plus stop feeling sorry for myself, as I really don’t need to AND tell Aj as soon as it happens – easier to deal with it as a team.

Other cool things – my friend The Style Queen offered to BUY me a wig if I couldn’t afford to [such a darling] – my other friend The Queen of Sun Tan Minus the Sun, has helped me to turn instantly orange!! And is sending me some false eyelashes in the post. Good, my sense of humour has returned as well [just as well, as I now resemble a tangerine]. Decided to use self-tanner as the chemo and the sun apparently don’t go well together – I think it needs a little more experimenting yet. And I am sure a little bit of real sun may be ok. Will have to invest in Factor 50.

So, sun – where are you?

Wednesday, 26 March 2008

24. visit to the oncologist

Tuesday 25th March:

this is the outcome of the afternoon's little jaunt. So!! The only bad news was I am definitely going to lose my hair. That's it as far as bad news goes. That is because I am going to be having 70 – 80% Carboplatin, and between 20 – 30% Paclitaxel [known commonly as Taxol]. They work out the dosage dependant on what your kidneys are like – e.g.: if you have the kidneys of a buffalo, they give you more Carboplatin, as the kidneys pass it too quickly for it to do you any good, but if your kidneys are weaker, they give you less, or the kidneys are likely to be abused by too much. But the Taxol is the stuff that really drives it home, and it’s supposed to be worth the side effects for the result. The Carboplatin does most of the work though.

Re: the hair. He said I will definitely lose it. I did get a bit tearful at that point, even though I expected that, and to be fair, I was going to ask if I could have the combination of the Carboplatin and the Taxol if they didn’t talk about that, as I would rather have no hair for a few months than have to go through this twice. The more aggressive the initial treatment the more likely I am to come out the other side free of this stupid disease, so I am happier to have both. But this is merely my personal opinion.

Right, bad news over. Now I just need to think about HOW I would prefer to lose the hair – I actually don’t think it will be a good idea to cut it off myself, as I think it would be too traumatic for me – you’ve seen the pics of me, and my hair is part of my ‘personality’ and losing it is going to be a bit weird [same for everyone I would think]. So I think I might have it done at the hairdressers. BUT, I’ll wait and discuss it with my friends – a team decision! Why not? Also think I’ll have the wig from the NHS just in case I need it etc. Some days I am sure I won’t care, but others I might, so better to have the choice.

The hair falls by the 2nd session – between week 2 and week 4 I’ll lose the lot. Thank goodness I didn’t bother going to the hairdressers and spending a fortune on colouring it. Can now spend that money on hats. ;o] But, hair apart [oops – forgot one thing, it takes about 6 months for the hair to grow back to the point of being able to get a brush through it apparently] – so, enough about hair, to all the factoids.

I had Serous ovarian cancer - the commonest type. It was a Grade 3, and a stage 3b. Grade is how aggressive the cancer was, and Stage is how ‘big’ it was – for instance, mine was big, but visible and has been removed to the best of the surgeons ability, 3c is when there are bits they can’t remove but they see them and know they are there. Those bits have to be chemo-ed or gotten rid of with radio-therapy. Apparently my prognosis is good, as he managed to remove everything in sight, and the remainder is invisible [IF it’s there at all] – it was ‘Maximal Debulking Surgery’ – good grief... debulking??

The chemo will go in through a cannula in the back of my hand [phew – didn’t fancy that thing through the main artery in the neck – yuck!]. It takes about 5 hours, as they can only start preparing the chemo when you arrive for your appointment, as it can’t stand around waiting for you. Obviously chemo is impatient stuff heh heh.

This is the best bit! It made me laugh - I can drink wine! It’s recommended! Apparently the people who have the most nausea are tea-totallers. Unreal. Seriously though, apparently it’s a fact that a glass or two of wine at night can really help with nausea. RED wine. So there ARE a few good points about this. Can race home after chemo, put my feet up in front of the fire and have a nice glass of Chianti! Ooookay! [obviously this doesn’t mean one can race out and party until dawn – all in moderation]

I will be given steroids and anti-sickness shots before the chemo each time. Anti-sickness tablets for 3 days afterward, and a few extra ones, but a bit milder for ‘in case’ it lasts longer than that. He said the nausea is not as prevalent as one hears, and that a lot of people don’t have it at all. As I felt sick most of the time before having the Great Debulking [!] I am sure I can cope with that. Plus there's the Ginger, which I will try if I need to.

Temperature has to be watched, as the immune system is being battered all the time – apparently you get cold and shivery if your temperature is too high, so at least it’s distinguishable from the hot flushes! Above 38° you call the hospital. Side effects are mostly; hair loss, nausea [but not always], aches and pains, bruising, bleeding [like a blood nose – again, call the hospital] and pins and needles [the latter three are all rare – but one has to call the hospital or at least tell them, as they have to deal with that] – but it’s not USUAL.

BEST thing – the ‘2 year’ statistic is rubbish – he said ovarian cancer is a VERY treatable type of cancer, it responds very well to the chemo, and that I have a very favourable outlook. He was amazed when I told him about the statistics we saw on the Ovacomb site. He said that’s not true. Personally, I believe the doctor over the site. And he said I had the best surgeon, and the best possible outcome of the surgery. I came home feeling 2 kilos lighter, as all that was such a relief. Common belief is that this kills you – well, as usual – lots of supposed ‘facts’ are not quite what they seem. And not quite right.

I came back shattered – I think it was the relief of knowing that those statistics are not correct [perhaps it’s out of date? who knows...], and that I know where I am with the hair scenario. My first chemo is Tuesday 8th April, after an assessment on the 4th. After that, off to the GP for a blood count 3 days before each session. 6 sessions in total, one every 3 weeks as long as my blood count remains ok.
Travelling during chemo isn't advised, as the risk of infection is high, especially from the 7th to the 14th day after the chemo when the immune system is at it's lowest. So, avoid the Great Unwashed at all costs it seems!

When you read this, please remember that all this is MY personal opinion, and the things I have been told relate personally to me. So!! Just to get through the next 4 months, and back to normal life as we know it. I really think it’ll speed by, as I'll be waiting as per usual - waiting for the blood count, then the chemo, then the blood count etc etc. A fast forward button would be handy!

Saturday, 22 March 2008

23. a 'good luck tomorrow' card from my brother

I love this - an email card from my brother with a photo of Mum's dog [well, she thinks she's a person. What can I say]. Arrived the day before I had the surgery.

22. P.S.: questions for the oncologist

Still Saturday 22 March
P.S.: Working on a big list of questions for the oncologist on Tuesday, so far it goes as follows:

    *what type of ovarian cancer did/do I have [Serous / Mucinous etc]
    *what stage am I
    *Stage ?? is:
    *what grade am I
    *Grade ?? is:
    *How successful is chemotherapy for my type of cancer
    *What is the aim of the chemotherapy
    *What are the benefits of this chemotherapy
    *What drug or drugs will I take. Will I have just one drug or a combination
    *What are the side effects
    *What will my treatment involve
    *Where will it be given
    *Through a drip or a central line
    *How long will my treatment last / how long will I be in each time
    *Are there any other drugs that could be used that you have not told me about
    *Will I have any other treatment for my cancer along with the chemotherapy
    *Lower resistance to infection for some months after chemotherapy has finished. How many is ‘some’?
    *What about radiotherapy
    *Can I have immunisations
    *Can I drink alcohol while I am having chemotherapy
    *What about sunbathing / sitting in the sun
    *Can I travel by air while I am having chemo [need a letter if not]
    *What about wigs

I leave a big gap so I can fill in the answers, then peruse it at my leisure later - I can never remember anything they tell me, so this is a good plan. Fantastic this blogging thing - I can waffle on willy nilly and nobody can stop me! Yippee!

21. there's a rat in the kitchen...

Saturday 22 March
Well, not quite IN the kitchen, but further on that in a minute... I am not impressed! Not a solitary Easter egg in this house! Plenty of rubbish like Mint tea, organic yoghurt [where did that come from? organic?!] and other healthy stuff. Blast. Having a very interesting day – got the idea into my head that MAYBE I’ll lose my hair and PERHAPS I’d better think about it a bit more. Ok, not bothered too much about it, but decided to check out the hat scenario – and had amusing thoughts of a purple wig too. Or a straight one – then I can pretend I am Jennifer Aniston in 20 years never know – I might feel like it, and better to be prepared! By now you must have realised I am a total control freak. Correct.

Hat web sites suck. Unless you want to go to a wedding with a great big fluffy thing. Which I definitely do not. Oh well, back to the drawing board. Baseball caps will do it, and I have zillions of them already. Plus the trusty Prada sunglasses! Good for hiding behind. The Bamster thinks they are actually permanently glued on my face – wonder if I can get a Prada baseball cap? Back to the internet immediately! Result was that Prada caps are apparently some kind of ‘Chav’ trend, and you can buy Prada caps for a tenner on eBay. Hideous!! I will have to get hold of my French friend Isabelle, the Style Queen, and ask her to find something appropriately poser-like, but NOT Chav-like.

Main interesting event – a great big RAT ran through the garden! OMG! What is this year like? Enough already! Cancer, Prada is becoming Chav and now rats!? How outlandish.

Hardly any pain today though, I am now down to one pain killer, which I take before I go to bed, as it makes me really sleepy. Most of the stitches have fallen out, so not much scabby stuff left. Still can’t wear jeans and things, as it’s irritating in a sort of ‘the hole where your tooth just came out of’ way; sensitive to fabric. And I didn’t need to have a nap today either, as I’m not so tired. I’m definitely improving every day now – and the scar will be so thin, after a while I am sure it’ll be barely noticeable. Good job I didn’t chuck my bikinis out. I shall start slapping on the Fabulous Organic Rosehip Seed Oil from Neal’s Yard as soon as it’s completely healed. Supposed to be brilliant for reducing scarring. We will see. Oh, and thank you Mr Renninson for taking sewing lessons seriously! Lovely man.

Friday, 21 March 2008

20. getting a bit over emotional

Friday 21 March:
Easter Friday – managed to totter up to town last night with Aj and buy Easter eggs for Vick, Jen and Grace. Got back and felt a bit like I’d run a marathon – windy, rainy and cold, and I can’t do that English thing we do of running from shop awning to shop doorway to keep dry. Silly country this – always rains, but there’s never any cover to get under! Architects are idiots. Anyway, plodded stoically up the High Street in the rain like a little old lady and was quite chuffed that I managed it. Felt like I was stretching the scar all the time – a bit unpleasant, but not painful.

Today Mum and Dad visited, as Dad is off to work in Paris on the day I go in to see the oncologists [roll on Tuesday! wish it were done already], so he came to say bye and good luck and supply me with more books. And fags! Good lad. Mum got me some organic Mint tea, so will try that later.

Having a bit of a funny day, as Aj is off to Stoke to deliver the Easter eggs and this evening out with his best mate Mikarik, for a few drinks. Tomorrow he’s off to see the Stoke match with the Boys of ’72 [don’t ask...] - very posh they are – in a suite! Then spending the night at his dad’s. Collecting my friend Patty from Bristol airport on his way home on Sunday [handy timing Patty!]. I am really happy he’s gone, as he needs a break to talk to normal people and have a bit of R&R, but I feel really lonely without him [ooo – selfish!]. BUT saying that, it’s nice to have a day on my own to just potter about. Confusing. Having a bit of a cry, and wondering why I am. I think it’s to do with another girl, a friends niece, who has this and she’s only 24. Makes me so sad, she’s so young – seems very unfair. Plus she’s having a really hard time of it – need to get her onto FB to join in the chat with the Jolly Gang. I am exhausted today too. Need to sleep a bit more I think. Over emotional.

Talking to the girls on FB today as well, Annabel and Tracey. Tracey the one who already has the ‘done this’ T-shirt has been giving lots of cool advice and ideas. One thing is a shopping list! Started it, and this is it so far:

¨ peppermint tea – good for wind and nausea. Blasted wind is driving me bonkers. Got that.
¨ ginger pieces [from the health food shop – not the crystallised stuff] – good for nausea after chemo – apparently they give you anti-nausea tablets, but only enough for 3 days [what??]. Then you have to just sort it yourself. Tracey said the ginger is brilliant for that.
¨ ice lollies – for the post chemo sore mouth
¨ Johnsons self tanning body lotion - for dry skin and to feel like you look better! can’t really sunbathe, so it gives you a bit of colour
¨ a manicure – this from a friend of Mum’s. Apparently your nails can dry out, so keeping polish on them can help.

Gotta get a grip, so I am going to do some work!! After I look at everyone’s pet dog on FB...think I need a pet too. Missing my cats.

Wednesday, 19 March 2008

19. insurance companies? disgusting people...

Wednesday 19th March:
Woke up this morning feeling really grumpy – I keep waking up at 3.00 and 4.00 in the morning - it’s freezing cold here in the UK and me, I have a personal heat wave! Lucky me... I don’t mind the heat so much as the perspiring – it makes for more housework that I can’t do myself, so it’s a bit frustrating. Might have to sleep in the bath?? Apparently this is a ‘hot flash’ – flash?? Hah. Who comes up with these idiotic names? Anyway, back to the reason I decided to do an update today.

The day didn’t improve at all. That’ll teach me to be grouchy in the first place. First I still haven’t been paid by the people I work for. Great, just what I need right now, a ‘chase me for money’ scenario. Grr. Second, the car cost about £1000 for the service repairs. As usual everything is going wrong at once. Hmm. Pass the wine, pass the wine [oh, of course, THAT’S gone up too! Thank you the government]...oops, can’t yet, it’s only lunchtime. Oh well, later then, after I have a good old bitch here. This is like self help; free therapy!

Lastly, [for today anyway!] I have discovered [well, Aj discovered it actually] that it seems to be acceptable for people to abuse you if you have cancer, or have had cancer. They wait for you to be down and then...YES! Kick you! For my job, I have to travel on a regular basis. Therefore I have annual travel insurance. It seems that once you have cancer [or ‘have had’ it - let me stress this past tense here!], you are a pariah. God forbid, but the insurance companies might have to PAY some money out if you are taken ill somewhere. How confusing for them.

It seems that they either refuse to cover you or the cost is really extortionate. So now we will have to do a major investigation into insurances - we will have to go through ALL our insurance covers etc and check that I am still covered and various other details. What fun. Bad enough to have this to deal with, and then you have to deal with petty squabbles from insurance companies as well? What’s that all about?? This really, really upset me actually - I was so shocked that anyone would want to add to my existing problems that I just lost the plot. Took about an hour to calm down - I suppose it''s just another thing I'll have to get used to.

One good thing happened at the last minute! Someone saw my post on the Ovacome site, and got in touch offering support. She’s already been there, done it and got the T-shirt. Had ovarian and endometrial cancer, went through the chemo and radiotherapy, and a year down the road she is ok – so now I have someone else to ask a million questions of, and it’s touching that she was kind enough to contact me. So the day was not a total loss after all! Whoopee!

Tuesday, 18 March 2008

step 18: two weeks later

Tuesday 18th March:
Now I’ve been home for 2 weeks, started back to work on Friday - bearing in mind I am working from home, and don’t have to lift or anything like that, plus I have very understanding colleagues. We got the appointment to see the oncologist in the post yesterday, I'm going on Tuesday. That’ll be interesting. Little brown envelopes are starting to make me a bit nervous!

Apart from that, the scar is still ITCHING! Driving me a bit mad, and I am so tempted to pick at it like we used to as kids when we had scabby knees. Restraining myself though, as visions of it popping open are quite a good deterrent! But it is surprisingly neat, I am impressed with the sewing skills! At least I feel confident about having a shower now, and I can have a bath, as long as I don’t soak in it, or use smelly things in it. Oooo - missing my bath oils.

Had lunch with Mumsy on the weekend, she was a star and really kept it together; I have come to the conclusion that this is all a lot harder for her, my husband and other people than it is for me? I at least can make decisions and decide things, and I know how I am feeling. For others that care about me, I get the impression there is a feeling of not being able to do enough, help enough etc. Quite frustrating for them. Bear that in mind when people seem to be ‘hassling’ you - they’re not, they’re trying to be useful. They NEED to be useful. Mum was very useful! Brought me home made bread and spaghetti cheese - yesss!

I think people need to see that I’m back to normal, not moping about the house worrying. I have all the power to do things, they have none to help me, so it must be difficult and upsetting. But I need everyone to be cheery and positive, so that I don’t waste any energy on crying and worrying if I can help it. I haven’t got enough at the moment to be using it up on something that doesn’t help me much. I still get very tired, and now a new and interesting event keeps happening - I wake up in the middle of the night drenched in perspiration. HOT!! Super. But not too difficult to deal with - jump out of bed and wander about the house until I am cooler, then go back to sleep. Aj is as bad – he is getting very little sleep, which worries me – he looked at too many things on the internet I reckon. Now that I know where I am, I avoid looking up too many things, as it can be a bit nerve racking and doesn’t gain me anything.

Right! Until Tuesday 25th then!

step 17: the wound afterwards

This was taken one week after surgery.

The marks on the left side are bruises and there are horizontal scrapes/scratches on the right side from where they clamp your tummy open. Very neat and tidy, but it’s bigger than I thought it would be. I suppose anything that you have all of a sudden seems pretty weird until you get used to it though.

step 16: before the surgery

This is what my stomach looked like just before the surgery. For me personally, this was grotesque, as I usually have a board flat belly. It looked as if I were pregnant, and was very hard and uncomfortable. Cutting my toenails was a nightmare.

If I had been carrying a lot more weight I probably wouldn’t have noticed the lump, and the surgery would have been done a lot later. This would have meant that the mass would have had time to spread further into my abdomen and cause more damage than it did.

step 15: biopsy results

Wednesday 13th March:
Went back in for the biopsy results, and they were much as we expected, but it was still quite a shock. I took my trusty notepad again, and Aj was with me. If you can take someone, do so, as no matter how well prepared you think you are for bad news, it’s still hard to deal with.

I have/had ovarian cancer, and both ovaries were involved, plus it had grown onto the bowel and there were traces of it in the omentum. This is a type 3 cancer [still need to get that clarified], and is pretty lethal. Generally speaking, the higher the grade, the more quickly the cancer is likely to grow. They have obviously removed everything they could see, but as the mass had started to leak into my abdomen, there is a likelihood of there being some ‘invisible’ cancerous cells still remaining which could grow back. So I need to have chemotherapy to get rid of it. There is a 70 to 80% chance of clearing it, according to Mr Renninson.

In two weeks time I will have a meeting with the oncologist who specialises in this kind of chemo. They will tell me what they plan to do, and give me a date for the first treatment. This is likely to be one week after the initial meeting. The delay is so I can first recover from the surgery I have just had, as it was so massive.

I will then have 6 treatments, one every 3 weeks. Each treatment takes approximately half a day. Apparently it’s exhausting, but I will get all the details on Tuesday.

The one thing the Renninson and the ward nurse said is in my favour the fact that I am so positive – apparently this helps a lot. So, we have our positive heads on, as I don’t intend to let this stop me doing everything and anything!

And, some totally gross news – he said the cyst / thing he removed weighed ½ a kilo!! Aaargh! And I have a picture of it – it is so disgusting I can’t believe it!! I am so glad I didn’t see it before he removed it, as I would have been tempted to try and get it out myself! Hideous thing. Anyway, shot of it now, and recovering well. Apart from the blasted wind!! I never knew AIR could be so problematic! grr.

step 14: the great escape

Friday 7th March:
Ok – time to go home today. Went to the loo at last! I asked the nurse to change the dressing before I left, as I had visions of things going on under the bandage that would only come to light the minute I left the hospital. So it was duly changed and I was asked if I’d like to leave the dressing off. I took one look at it and said no. Absolutely not thanks! Really would rather have it covered up for now, until I get used to having a great big slash down the middle of my once nice flat brown belly! Sorry, but yuck! Nothing like having ones head in the sand – if I can’t see it, it’s not there. For the moment.

Also, I didn’t much like the look of it, as my stomach is still swollen on one side, and flat on the other. Foolishly, I expected it to be flat, but as there had been so much rummaging around going on in there, I think it’s going to be a while before it looks normal again.

The wound is healing really well apparently, and I will be able to take the dressing off on Monday. Ok, sounds good to me. At least it’ll be covered up for the weekend. Had a few more blood pressure checks etc. The physiotherapist came round again to make sure I understand how to do the exercises. Great – got rid of the white knee highs too! Aj collected me after work, arrived early thank goodness, as I’d been sitting about in my clothes for hours in anticipation, and I kept falling asleep in the chair.

Hooray! Home at last, armed to the teeth with painkillers and good advice – now for some sleep.

Monday, 17 March 2008

step 13: Thursday brings some foolish remarks

Thursday 6th March:
Great - when Mum arrived today I could totter out to the patients dining room. I had breakfast there. Called her from the dining room at 7.00, as I had been awake since 6.00 and was gasping for a coffee. That's a great inspiration to walk I can assure you!

What happens to your brain while you are in hospital? I think the anaesthetic does some very odd things to one’s head. Lots of gaps in my memory, and some things I 'remember' didn’t happen at all or they happened at a totally different time to when I think they did. Oh well - all good entertainment!

My crazy friends in South Africa texting me to see if I am still alive made me feel very important and made me chuckle - not a good idea! Chuckling. Have to try to be a grump, in order not to disturb the stitches. This isn’t because they hurt, it just feels peculiar. Plus I am imagining the whole thing just popping open [the curse of an artist is the overactive imagination]. Feeling quite happy about everything now, as I know every day I am closer to going home [ah, sleep! bliss - I keep dreaming that my bed is calling me] and also every day is another step closer to being recovered from this whole thing.

The food in here is pretty good, you fill in a little menu the day before, then you can trundle along to the patients dining area if it’s possible, or the nurses bring it to your room if not. This is better than a hotel! The nurses come and call you for lunch, dinner etc. and everyone is in their dressing gowns, it looks like a midnight feast at boarding school. Quite good to get up, as I stopped feeling like there was ‘just me’, and remembered that thinking too much is foolish. Better to get out and about and talk to other people - the other advantage of this is that it totally tires you out! Walk, eat, drink water and sleep. Excellent.

The ‘other’ surgeon popped in again today [still can’t remember the poor chaps name] and asked if I’d like to go home! I must have looked exactly how I felt – as in: ARE YOU INSANE?? So, I refused. Still hadn’t been to the loo properly so I decided it would be better to stay in until that event had occurred. Silly man – he also informed me that ‘in his opinion’ I would definitely be having chemo. Now, this is all well and good, BUT Renninson told me in no uncertain terms, that we couldn’t know that until we had the biopsy results. So I was very upset by this chap, as it was I was still just getting over the surgery, and honestly did not need to hear that right then. I’m all for straight talking, but that was a bit much - plus it was uninformed. The results weren’t back. That was the first time since I’d arrived that I wanted to have a cigarette. And wanted to whack him.

Had a shower with Aj's help. WHAT a nightmare - I was so stressed about getting the bandage wet that I was almost in tears, AND I felt so ugly with this horrible stomach [there is still a lot of swelling] plus it's exhausting. Decided never to have a shower again. But I did feel better after - but showers are not good for this type of wound. A shallow bath would've been more useful. Roll on home time!

Poor Aj had to suffer my tantrum about that Doctors remarks, but as always he was brilliant and helped me get my head together before he left.

Sunday, 16 March 2008

step 12: planning my escape...

Wednesday 5th March:
Discovered today that he removed both ovaries, the womb, the tubes and the omentum. The cyst had leaked onto the bowel and into the omentum, so out it came. Good. Bye bye. Luckily it hadn’t gone INTO the bowel or anywhere else that they could see. According to the anaesthetist & the other surgeon [can’t recall his name – he worked with Mr Renninson], it looked quite horrible. Well, it can look how it likes now, as I am shot of it. He didn’t need to remove the lymph nodes either.

Of course, as I was drinking all this water and eating things [still can’t remember what things! I know Mum brought lovely grapes and had a very nice bag with her], that meant I could take pain meds orally, so I got shot of the epidural - it appears to have been stuck onto my back with tape. The tape left an amusing itchy rash - yay, please, I need more aggravation! Bah. Anyway, that was minor. Got it out, and that was great. IV out too! Both the cannulas in my hand had to remain. Yuck. But too bad. The nurses [perpetually cheery lot that they are] decided I could have a bed bath. I decided that I would have no such thing, and was allowed to wash myself after they hauled me out of bed and into a chair. I had a go at washing, but decided that it was all a bit much, and it was a bit cursory to say the least. But I did feel better for it. Hauled back into bed - you start to feel like a bag of potatoes after a bit.

Hooray, a day full of achievements - I was feeling quite chuffed with myself until I tried to walk.

Aj arrived for visiting hours, and I tried to trundle along behind him, hanging onto his back pockets - I made about a metre and felt delirious. Back to bed, feeling rather hot and exhausted. Thankfully Jackie [the other Clinical Nurse Specialist] was with us at the time, and she told me to just try again in an hours time. So I did, and viola!! Managed to remain upright, and go forwards a little on my own. By the time Aj was going to have to leave, I’d had the catheter removed and could totter to the toilet and back with the aid of the walls, door handles and the handily placed basin. Marvellous. Progress. Slept much better that night, though still woke up every few hours. Hospital is not a place to sleep that’s for sure.

step 11: the day after surgery

Tuesday 4th March:
Had an interesting night waking up and falling asleep at least 25 times, mostly wondering where on earth I was. Lots of blood pressure checking happening.

By the way, we have a superb wing here in Exeter hospital for this stuff – I had my own room, with my own bathroom as well – can’t imagine I would have got better treatment even if I’d been a private patient. So I had lots of privacy. This was good, as I had already decided I didn’t think much of the catheter, and I had best get cracking in the ‘walking around’ department as fast as possible. The catheter wasn’t painful at all, just too strange, and each thing you can get rid of seems like it will be a step toward getting back to normal.

So, first, DRINK! Water by the gallon, down the hatch through a straw – hooray, no nausea. I think one of the nurses commented that I was ‘peeing for England’ [nurses are not scared to speak their minds that’s for sure – love them!!]. Managed to eat something as well – can’t remember what it was at all. This day is a blur in my mind.

Aj came to visit and that was about that.

step 10: straight after surgery

That afternoon:
Opened my eyes and the clock said 4.20pm. So I must’ve been under for about 1 and a half hours, a bit more? First good thing: Renninson had said that the op could take anything up to 4 hours – so if it was quicker it had to be less complex right? I don’t know if that’s true, but in my mind it was, so I felt better straight away.

Because I am obviously a drama queen, I went into anaesthetic shock; I felt very cold, had severe shaking, shivering and chattering teeth. Horrible! This went on for about an hour, so I had an oxygen facemask instead of the two pronged affair that fits to your nose. Even more horrible! Apparently this shivering happens due to loss of body heat that occurs in a cold operating room, and the resetting of the body’s thermostat which happens during anaesthesia. Not sure about that. Whatever, it gives you bruised ribs to add to your other aches and pains…I was not impressed. Felt like a mad jelly. Plus I was totally disoriented.

Second good thing: no tubes in my nose! Relief. I noticed that even in the midst of all the drama, as that meant they hadn’t needed to remove lots of bowel – yay! Shiver, shiver. Shake, shake. Nurses being their usual calm and lovely selves, telling me how to breathe and not to worry as this is normal and I’ll be ok soon. Ok, could soon hurry up please? I’ll have no teeth left soon... At last saw Aj’s face – more relief.

The other problem was my blood pressure had dropped to idiotically low levels. All I wanted to do was go to sleep, but I had the pressure cuff on my arm, bleeping away like Pacman all the time. They took my blood pressure every hour [or more often – it’s a bit of a blur] until the next day when it went back to my usual low pressure rate.

So, onward and upward – turned out I was in quite a lot of pain which I shouldn’t have been, as I had the epidural for morphine. Alas, the blasted thing only worked on the right hand side, as it seems the anaesthetist had put it too low [this according to the ‘Pain’ nurse, who arrived forthwith to resolve the situation, so might not be the reason]. They left the epidural in as it was doing half it’s job [you can’t feel it at all or even know it’s there], but did give me more pain relief. This is a good time to mention that before you go in, you will be asked if they may give you pain relief by suppository. Say yes! They had to do that to me, as I still couldn’t drink, and undignified as it may sound, you DO NOT CARE about dignity when you are in pain. They could have pushed it up my nose for all I cared, so long as it worked. And it did.

Then I had an injection for thinning the blood [this is to prevent deep vein thrombosis] I think it’s called Fragmin. You have one every day and it hurts quite a bit. Plus you get to wear nice thick white knee high tights for the same thing. Being in hospital is such fun.

step 09: the surgery at last

Monday 3rd March:
Sprang out of bed at 6.00, strangely I am really looking forward to getting there and having the surgery done, can’t wait for it to be over. The way I see it, as soon as it’s done, I’ll be recovering. Plus I won’t resemble a small block any more I hope. Hooray. As I don’t fit into any of my clothes, I am washing and wearing the same things over and over. I refuse to buy lots of clothing to fit this big stomach – which, by the way, now resembles a 5 month pregnancy, is rock hard and gets in the way when I try to cut my toenails. Grr.

Sloped around the kitchen madly guzzling as much black coffee as possible before the 7.00 curfew – had to stop all food at 12.00 the night before, and only clear liquid from then on [no, no gin allowed girls]. Nothing at all after 7.00, not even water! Jumped in the car at 7.30 to arrive early at the ward with my little bag stuffed full of books, the faithful Nintendo [by this time my family had handily supplied more games! cool]. Supposed to be there at 8.00. Puffed the last ciggie on the way there - I felt like I was on my way to jail. No smoking, no eating, nothing. Oh well, it won’t be for long, as I have been training my brain to think of only drinking, eating and walking as soon as I wake up.

As soon as you can drink, eat etc. you can lose the catheter and the epidural. Sounded good to me. The other thing in my mind was that IF there was no tube down my nose, that would also be a good sign, as it would mean no major bowel issues.

So, get on the ward, have the first of many blood pressure checks, and extraction of blood for testing [I am convinced they drink the stuff - how many tests can you DO on one persons blood anyway??]. Renninson arrived with a posse, to see if I had any questions, my only one was ‘when am I going in?’, and was duly informed that I was 5th on the list. So, about 12.00 noon I’d be in. An hour later it changed, as a diabetic woman had to be put forward [hardly surprising, as by this time I was ravenous and I imagine it’s much worse if you’re diabetic]. Andrew managed to secure a coffee and a bun in the cafĂ©, I carried on starving away in the ward. No food, no water AND no fags?? Rather trying!

Eventually got my smashing hospital nighty thing at about 12.30. Climbed into that, after doing it up the wrong way ten times I finally succeeded in getting it so that my derriere didn’t show. Another blood pressure check. Things get a bit hazy about here. Went to the theatre on foot with a stripy nurse. Waved goodbye to Jones at the lift, felt a bit tearful then and I was crying in the lift. We went up, he went out. I felt like running after him. But toddled off with Nursey instead.

Arrived at the theatre and no-one would let us in! Lunch time for anaesthetists apparently! Hung about in the corridor in a suspicious fashion until eventually a severe Nurse person arrived and got them sorted. In we went. Jumped onto the little steps and climbed onto the bed [looks like a big slab, and is definitely washable!]. One more blood pressure check, and ‘My what good oxygen levels you have dear’ [this always happens, as they think all smokers are suffocating in their own blood or something]. Massive great stab in the back of my hand, which had to be beaten half to death for a vein to show it’s face, in went the dreaded cannula. Then a discussion about my nails with the anaesthetist, which dissolved into tears [I always do this going under – it’s a control thing I reckon] and then…

step 08: some questions to ask

Questions I asked:
Q: what was he going to remove?
A: womb / ovaries / tubes / cervix – IF the ALF has grown into the bowel, some bowel. how much would depend on the severity of the growth. IF he didn’t like the look of my lymph nodes, those too. I told him to remove anything at all he didn’t like the look of. Personally, I would rather have it removed right now, than dither around and have to go back for more opening and closing.

Q: where was the wound going to start and finish?
A: either beneath my belly button down to my pubic bone, or [if ge needed to look further up] from my breastbone down

Q: which pain medication is most successful?
A: Renninson recommended an epidural, as he said it helps you heal quicker. More about that later. There are two forms, the epidural morphine or the ‘self administered’ morphine. Unfortunately the self administered morphine has a lock on it. So unfortunate! Imagine the fun one could have!

Q: would he sew the wound or staple it?
A: he said he’d do whichever would hold me together best [oh really? no!]. I asked him to please TRY not to staple me. I am not a bloody book, and don’t fancy looking like one.

Q: what would I wake up attached to?
A: An IV drip for hydration, a catheter, the epidural in my back. Then the ‘maybe’s’ were; a drain from my stomach, depending on how much blood I lost, a temporary colostomy bag if they had to remove/repair a lot of bowel, a tube in my nose for the same reason.

step 07: the pre-op clinic

Thursday 28th February:
Attend the pre-op clinic with Aj. Hours spent here. The car parking people must make a fortune out of everyone else’s misfortune! Beasts.

First had MORE blood removed, then waiting. Then urine sample again [she just caught me in time, or she wouldn’t have got one at all – was busting as usual! all that pressure in there is no joke] then more waiting. Then blood pressure, weighed and measured [I am fatter AND taller than I thought – what a day...].Then saw John Renninson with Aj – he was brilliant – explained everything. Both of us had opportunity to ask questions and he was very patient. I took a list of questions with me and filled in the answers as we went along – some were rather foolish [too much info from the internet!!], but now he’s explained all of them, so quite a few things I was worried about I can cross out completely. Phew. Gail, the Clinical Nurse Specialist [there are two of these, the other one is called Jackie] explained further. Went directly to the pub after and did some chilling out before calling the family.

It’s a good idea to take a list with you when you go to these appointments. Even just a paper and pen, so you can write down what they tell you. The surgeon won’t care what you do as long as you don’t actually attack him, and whatever he tells you goes in one ear and out the other at the time, so it’s good to have it to refer to later when the brain has finished panicking.

The Clinical Nurse Specialists are at your disposal too – you can call them whenever you like to ask questions, and they are SO kind, and very helpful. Mines of information and they’re NORMAL!! Not as scary as the specialists/doctors. I think it makes it easier that they’re women as well – at least you know that they understand where you’re coming from, like me worrying stupidly about what the scar is going to look like? But silly things aren’t so silly really, every little thing adds up to a big one, so the more information I can get, the easier it is for me to cope. But not everyone’s like that, so you have to deal with it all your own way. But at east you know if you do have a query, every single thing you ask is taken seriously, and nothing is too silly to worry about or ask about.

Saturday, 15 March 2008

step 06: CT scan results

Wednesday 13th February:
Nervous nights sleep Tuesday night. Off to the appointment to see Mr Renninson to get the results of the CT scan and see where we are. Had to wait until the big meeting of all the specialists had taken place on the Tuesday, so I was lucky to get in on the Monday, or it would have taken another week.

Apparently the ALF is so big that they can’t tell if it has grown onto other things. Not a good thought. It’s pressing against everything [that’s why I am so uncomfortable and constantly running to the loo]. So the plan is to remove the womb, tubes, ovaries etc like a full hysterectomy, but he can only decide what else to remove once he’s opened me up and can see what’s going on. Sitting hearing this little lot was shocking for both of us – I was hearing it from another planet almost. Anyway, he said that he may have to remove my lymph nodes, and maybe some bowel, if the ALF had grown into it. Hmm. More ‘out of body’ hearing effects. Feeling rather like I may topple off the chair. Renninson explained everything very clearly and answered every question patiently. They don’t mind if you ask lots of things, and there is no feeling of ‘hurry up, I’m busy’.

The worst thing [at that point] was when I asked him if he would be making three cuts across my abdomen, as I’d read on the ever-informative internet. He looked a bit surprised, and said no, it would be a vertical cut, from either my breastbone down, or my navel down. Oh yuck! No more bikinis for me then! [your mind does these things – as if bikini wearing is at all relevant!]. Aj asked a few questions of his own, and by looking at his very pale face I could imagine what mine must be like. Then we trundled out. Straight to the pub to digest everything and phone my Mum [poor thing – have a nice day Mum, NOT] and brothers. Then pour some wine down the throat whilst feeling like a bomb just fell on my head.

Managed to remain quite calm all day, but in the evening I had a bit too much wine [a LOT too much], and finally let loose in a howling mess. Andrew had to deal with a sobbing wreck until I finally tottered off to bed. But I felt much better the next day, so must’ve needed to let off the steam I think. Crying doesn’t help much usually, and uses all your energy up, but I think it can be handy every now and then. Wouldn’t want to explode due to all this building up inside now would we? Messy...

step 05: CAT scan

Monday 11th February:
CT scan [CAT scan] day. Good grief. What is this? I didn’t like this much at all. The day seems a big blur in my head. Arrived at 8.30, early. Went onto the Ward again, and got kitted out in the snazzy hospital gown. Whoever designed them, I hope they have to wear nylon trousers and a parka in the desert for a long, long time. Bad enough you’re ill, scared and like a fish out of water in there, but you have to look like a bin bag as well?? Most unpleasant.

Blood pressure taken, blood taken [I think it’s mandatory for your blood to be taken the minute you go near a ward?], urine sample given, Nintendo played whilst waiting. Very useful machine that - headphones and a Nintendo keep you thoughtless & mindless for hours at a time! Anyone who goes through this, make sure you have mindless entertainment in your handbag at all times. There’s lots of waiting, and even though everyone is doing their best to get you through quickly it can be very frustrating.

Cannula inserted in the back of the hand - oh ouch! I hate those. But I assumed it would be useful to someone at some point. Grinned and bore it. Grin probably looked like a rictus, as that’s the one thing that always seems to hurt. No flesh on the back of your hands to stick it into.

Off to the scanning place - in a wheelchair?!! I felt like a right fraud! Anyway, the lovely chap who pushed me there parked me in the corridor, logged me in and disappeared. Sat there in a line of wheelchairs and beds on wheels, having a nice chat with a very elderly gent behind me.

Eventually went in for the scan. I expected that tunnel thing, but this was a big ring, and you lie on a bed and move through it. Much better - no claustrophobia. The machine tells you to hold your breath, it’s not for too long and then in you go, then it tells you to stop holding your breath. That’s at about the point you are thinking: ‘help, help, no more breath left!’. Out the other side again – this happens a few times. Then along comes the radiologist [is that what they’re called? whatever] out of her little glass booth and puts some kind of dye into you through the cannula. Aaargh!! That was horrible - you can feel it racing around your body like fire, and [this was weird!] you feel like it’s quite possible that you’ve wet yourself! Of course you haven’t, but the sensation is very odd. Not something I’d like to repeat.

Out again, and off you go. Back to the ward and Home James. Come back on Wednesday to discuss the results. Ok!

step 04: action

Thursday 7th February:
Right – waiting, waiting. This is not good for my head – I am very impatient. I understand that there are probably lots of people who need attention more urgently then I do. Of course. But as the small lump was now becoming the LARGE lump, I was starting to be rather unconcerned about everyone else’s problems, and rather obsessed with my own.

By this point the ‘Alien Life Form’ [henceforth known as ALF as I can never decide if it’s a lump, a cyst or a mass – so I give up] was a topic of conversation amongst my girlfriends, who were all a bit amazed. Me too. Then after a few days the ALF grown to about 20cm and my belly was hard as a rock. Sorry other people, but panic set in, and I was off to the GP’s again in ‘DO NOT MESS WITH MY HEAD’ mode!

My GP was fantastic. I want to have T-shirts made with his face on them. Dr Bradley for President. Dr Bradley for Prime Minister. He did an external exam, decided that he didn’t need to do an internal one [for obvious reasons], and got straight on the phone to the hospital. Much ‘doctor speak’, lots of frantic typing and by that evening I was in a bed in the Wynard Ward, waiting for a slot to be available for the CAT scan to be done as fast as possible. Managed to race around the house with the hoover before I packed my little bag and taxied off to the hospital, as I had images of never coming out again in my, by now, spinning head.

Unfortunately they couldn’t fit me in on the Friday as hoped for, so I went home in the afternoon, but clutching an appointment for Monday morning in my sticky little hand. Phew. Relief. Everyone in there was so understanding, I now felt in good hands, and that some action was being taken.

step 03. still calm at this point!

Wednesday 30th January:
Hoorah! At long last the day arrives. Off to the RD&E for the sound scan thing.
The 5cm lump had now become about 10cm, and I was getting a bit worried. Dr Ali, a registrar of Mr Renninson, did the ultra sound scan. Oh goody, I could look at the Alien Life Form on the TV. Fantastic. NOT! Lovely friendly nurse there to hold my hand and talk to me, I think this is so that you don’t run off shrieking when you see the TV image.

Packed myself back into my clothes, and Dr Ali then informed us [yep, my darling husband Aj was there, being very cool and asking things that I forgot about] that the ‘cyst’ [aha – now we know what it is – good show] was about 11cm, and it looked as if it may be malignant. But that he couldn’t really say, as that’s impossible to know until the mass [oh yes, there are all sorts of names for these things – cyst, mass, blah] had been biopsied. This can only happen AFTER it’s been removed.

So, ok, when can you remove it please? Hmm – well, you have to have a CAT scan. You will receive an appointment. Go away, and don’t worry. Right. Sure. I have a lump that’s doubled in size in ten days, looks malignant but I shouldn’t worry? Ha! Of course...well, I laugh in your face...
But joking aside, I was given an appointment for three weeks hence to have the CAT scan. Off we went for more waiting.

step 02: see the GP

Monday 21st January:
Arrived back from Portugal, raced off to the appointment with the GP – my usual GP wasn’t there, so I saw a very helpful woman instead – she booked me in for an ultra sound scan at the Women’s Health Centre, RD&E in Exeter, in a week and a half’s time. At this point the lump in my groin was still about 5cm. No cause for alarm!! No other side effects, apart from a bloated tummy and some extreme tiredness before I had a period. My periods got longer, about 8 days, with only about 2 weeks in between – but I thought nothing of this as they have always been heavy and erratic and very irritating. Again, I blamed all the travelling.

Thinking back [isn’t hind sight fantastically clear? grr], I had been complaining about having a bloated tummy from about October onward, but with all the travelling it seemed a side effect of that. One other thing, I had been putting on weight, whether it was to do with this or not I am not sure, but I was starting to feel rather like a Puffer fish! A tired and lumpy Puffer fish to boot. So, now to wait for the ultra sound.

step 01: how it started...

2007 - 2008.
Some time in December 2007:

I was working away from home in Portugal and I felt pretty bloated all the time. Usually I have a really flat belly [it’s just luck! I don’t actually do any exercise or anything frightful like that]. I ignored it [as you do] thinking it would go away.

Then we went to the Gambia for 2 weeks over Christmas, and I started to feel really bloated, plus I found a 5cm lump in the lower right side of my groin. You notice this a LOT in your bikini! But I still thought it was just a glitch from travelling - odd water, odd food.

But then January 2008, while I was again working in Portugal, the lump started to bother me, as it hadn't gone away, and I was feeling very tired at strange times. So I called home to arrange a doctors appointment asap when I got back, as it seemed a bit odd. Plus I was exhausted a lot, so I thought it would be a good idea to see the GP anyway.

I thought the lump might be from having that projectile vomiting bug at Christmas...that was fun... [plus we were in the Gambia, so could have been anything!] – maybe a hernia? Hmm. Anyway, wasn’t that bothered at the time, as I’d been travelling on and off almost non-stop for about 6 weeks, and you sort of expect to have a bit of an iffy tummy.