Tuesday, 21 September 2010

2010 - 21st September - I Needed Time Out

So it was a busy week last week and I finally got my bone scan, which by that point I didn't care about.  I saw my daughter in the morning on Friday, and she helped me find a pair of flat shoes, heeled boots and trainers.  All of which I needed (trainers worn too thin on soles I can feel every tiny stone, heeled boots - heels almost falling off, flat shoes - needed some more rain friendly ones than suede).  It was a tricky morning, in that it was the day after a new Fentanyl patch so I threw up in the morning and felt bloody awful all morning.  Still, we had a couple of hours.  

Beckie picked me up for hospital - had been preparing a green/mango juice to take in a flask to hospital and as I was feeling ill and sweating/shaking, I had to eat something.  (See photo of green drink: celery, apple, kale, cucumber) Fairly uneventful waiting room experience, although did see my favourite colorectal nurse.  I knew when she'd called a couple of weeks before that he was going to recommend chemo, but I think I was in denial about how soon that might be.  I mean I feel fine (when the pain killers aren't making me a zombie), I look fine.  I'm not "ill".  I've been working on my immune system for two months or so and I don't want to poison what I've worked so hard to heal.

The very fact that the main drug I'll be having this time (Irinotecan) is going to make my hair fall out means I'll go from looking and feeling great to looking and feeling like a cancer patient in just a few weeks, possibly less than a month.   Dr Tom suggests I start "yesterday".  Nothing in my gut agreed with him.  I was listening to Deepak Chopra again the other day and one thing he said popped into my head "If you aren't sure whether to follow you mind or your body, follow your body".  My body has no issue with what I'm eating and drinking, I have stopped losing weight, feel more energetic, less weak.  My body's reaction to poison, diarrhoea, hair loss, abdominal pains, vomiting - Lisa's computer says no.  Even my mind isn't convinced this is the right path at this point - here are some of my reasons:

CT (about 22nd July I think) scan showed possible local recurrence at join (ie a few inches lower than where the tumour was since my rectum has gone and it was at the top of the rectum).  The pain is where the original tumour was not lower down, so I think it's inflammation in that area causing pain.

Medical team think - not cancer, just the join.

MRI 25th August - no mention of anything suggesting cancer in my pelvis anywhere.  Where did the "possible recurrence" go then?  Did I get rid of it or was it never there?

Bone scan - 16th September - no report in but to Dr Tom "appears fine".

I say, I'm not ill, I have no symptoms of cancer - he says I am, the pain.  Why am I getting pain if there's nothing there Dr Tom?  "You have cancer in your pelvis" Where, where the hell is it, you can't see it?  You denied it was there even when CT suggested it, now you are sure it is there?  So is this his reason for wanting me to have chemo now?  On 2nd August I wrote down that he wanted a chest scan, to see what is happening in my lungs.  No scan ordered on my chest.  Still none ordered, nearly two months later.  I should have asked if there's been growth from CT to MRI in a month.

So after more tears from us (couldn't really look at Beckie in case that made either of us feel any worse, if that's possible) we discussed waiting.  He said if I leave it much more than a couple of months, something will happen that could make chemo impossible.  Something being brain or spinal tumours - well I know from Peter and Bec that that's what's likely in store for me.  So he thinks that's so close?  Or is it scare tactics?  They said it's my decision, I should be selfish and do what's right for me.  Can I face my children knowing I didn't try the chemo?  I only just started seeing my son again, I know I look so much better than last time he saw me, ill, just out of surgery, depressed - later so close to being suicidal.  

There is the option to just have the 5F Poo (5FU - PICC line again - pump connection Monday, disconnected Wednesday).  Check if it's working with a scan, if not add the (what I'm going to nickname Evil Irene) Irinotecan.

I'd probably have a scan in October as a baseline scan anyway to compare to.  We agreed I'll see him on 1st October and, knowing I have Dublin and Hayley booked for my birthday week at the end of October maybe I'll agree to starting then.

I couldn't bring myself to talk to anyone about it until late Saturday when Hayley was online and I was ready, having bawled down the phone to my Rock who couldn't come to talk any sense into me because he'd got a friend over for the weekend.  The conclusion I came to was - I want to see what the next scan says compared to the first - if there's growth, hook me up to Evil Irene.  If there isn't, surely I am having some effect myself?  It can wait another 3 months?  Or do I just do the chemo to try and shrink them now, and shrink them more myself?

I spoke to D last night - he's done Irene (ha sounds so wrong) lost his hair, become allergic to the 5F Poo and got a constant mouth full of ulcers.  Initially growth slowed, then shrunk and since he's made some positive decisions about work which was making him unhappy and started partying like a "healthy" person, they've stopped growing.  So, on the one hand, the chemo didn't affect him negatively as far as the tumours went (the evil effects are a given) and most importantly his attitude made the biggest difference it seems.  Which is exactly what Dr Rock prescribes (self belief, hope, meditation).  I'm backing that up with the physical stuff - juicing, alkalinity, yoga.  Is the chemo just another weapon?  Albeit one with seriously damaging effects - effects I should be able to counter to some extent with my diet.

Today I'm off to Derby so I can travel on Wednesday a little after the crack of dawn to Bec's funeral.  I believe it's a greensite memorial service where trees are planted instead of headstones.  This is what I have planed for myself (haven't paid for it yet, I'm still expecting not to need it for a few years yet) in my will - just have to fork out for the amendments.  I'm going to be near the sea (and the Rock by chance).  As horrible and unwanted as the reason for going to a green memorial is, finding something positive out of the day: I get to say goodbye to Bec, I get to see a couple of BBs again and see what it is I'm choosing for myself.  

Sunday was filled with my daughter (K) in the morning, wander round shops, feed her ( I had tomato soup from M&S and a small brown seeded roll - about the size of an apricot - first bread in 2 months) then went to pick my son (P) up from his mate's.  Still shocked at his height and deep voice but with my little boy's face, mannerisms and humour.  They both seem really happy in themselves which obviously makes me happy, but now I just like spending time with them, they're not really kids any more and definitely developing their personalities very quickly.  They're fun and they're good people and I don't want to leave them.

The Rock came over, as promised to "have a word" and things, as ever, just felt alright once I'd seen him.  Cocky sod, knows that's how things are, but having a hug from him just makes me calm and happy, untroubled.  So I can't have that on tap or anything more than a hug, he's in love with someone else.  But I get a lot more from him than I've had in most of my relationships and it makes being single and alone more bearable.

Thursday the district nurse is coming back to see how discussions on Friday went (with the whole bloody world expecting that of course chemo is what I'm desperate to do).

Feeling a bit happier now I've voiced my reasons for hesitating out loud to Beckie, mum and Auntie Susan and thanks to Hayley and the Rock for listening and asking the right questions/making the right observations to help me get this far. And thank you to Lisa for the company she would have provided had her week not started off in hell!

Better pick out a dress Bec would approve of - heels or not Bec - I mean if I'm standing in a field, I don't want to start sinking?  I'm not convinced you'll want black everywhere?  But is it about what I think you want  or what other people think I'm displaying in terms of respect for you?  You know.

Sometimes it's hard to be a BB. 


Carole said...

It's a difficult choice that you're facing Lisa.

Take your time and make the decision that YOU are happy with - whatever that may be.

Like you, I'd want to know exactly what the Chemo is targeting, it would need to be shown to me to be more benefit than just poisoning my whole system 'just in-case'...

Maybe you need a whole body PET scan next?

Sending you a huge hug - obviously *not* as nice as the ones you get from Mr Rock but one of my best ones.
Much luv xxxx

Tony Songhurst said...

Hi Lisa,

I recognise that green juice although mine is with half a bag of spinach and I add in lecithin, E3 Live, multi-vits and probiotic. I also add some barleygrass to boost it up even more and 6 pots of wheatgrass...then divide it into 3 containers for the day.... It took a bit of getting used to but now I look at it and what it represents and iot actually feels and tastes good to drink it...sometimes it burns a bit when I put a bit too much ginger but yummy none the less.

Like the 5F poo comment, I cant have that as I had such a bad reaction it was stopped after only 4 days into a 6 month course - they told me it would kill me if i took it...some irony in there somewhere!

I don't know you well enough to give advice, but...

I would defo pick out a dress that Bec would approve of and not the rest of the people there...she was your good friend and you need to know she would approve!

Hard to be a BB but proud to be one!

T xx

Loopy said...

Tony, I have spinach and/or Kale usually - made a spinach and chick pea curry so was all out of spinach! I have all the added stuff in tablet/powder form for now, need to research liquid ones. When you say pots of wg - what do you mean? I juice an oz or 2 of fresh grass I grow. Always drink it fresh though, in case anything "dies". Lime is a nice change from ginger.

My friend Dean also is now allergic to 5Fpoo, not looking forward to that possibility, but at least on a pump you can unplug it - only have 48 hour infusions, though I was fine on it 24/7 for 7 weeks the first time, hope I can still tolerate it.

I think she'd like my dress - everyone else seemed to have the same attitude. Will blog about it tomorrow perhaps.

L x

Tony Songhurst said...

Hi Lisa,

Pots of wg, I tried growing the stuff and it kept dying so maybe you could give me a few tips...the stuff I have is 1oz pots and I have 6 per day....at a pound a shot it works out quite expensive as I use 2x2 a day doing enemas too so that works out at £10 per day :-) So help me out with the growing as I have a 25kg sack of seeds in my dining room!

I get all my liquid stuff, mainly E3 Live through a Dr I see, called Dr Kate James...amazing lady, have a look on her website...

Hope the patches are still holding up.

T x

Loopy said...

I prefer fresh - as I don't know how much is lost as it's sitting, but I just have cheap Wilko's trays some peat free organic (Wilko's) compost, soak seeds for three days, rinsing and draining daily and keep in the dark if you can - or just sprinkle on compost, cover and water. Must never dry out, don't let get humid, or mould grows, but can cut above mould. That simple, only had one failure (let my last lot dry out when I went to funeral, forgot about it!) I know I'm not having as much as recommended, but since I can't even pay my mortgage right now I'm keeping things down to a minimum. Weaned myself to 3/4 patch which is keeping zombiness at bay.

Carole - apparently PET scans NOT an option in my area. But really it won't make a difference to the plan from onco so I'm letting that one go. Thanks for the hug xx

Tony Songhurst said...

One thing...if you need more wheatgrass than you can grow and if people around you say...let me know if you need anything...tell them to grow a couple of trays of wheatgrass!

Apparently the big banana company freeze on the day and transport it still frozen...

T x

Loopy said...

Well I've not had such luck with it now the weather has changed :( Resorted to bought stuff for a week....thanks for the shopping tip though! Definitely want some in for chemo, fresh is best, but frozen is better than none by far. :o)

Tony Songhurst said...

Big Banana Juice Bar are pretty good, I am also trying dried barley grass which is not too bad!


T x

suze said...

babe, have you started with the irinoticin yet? .. I had 6 months of that last time .. and it did NOT make my hair fall out .. so it can vary from person to perosn

it DID interfere with my bowel function and give me bad nausea, worse than anything in the other two rounds of chemo .. so be prepared for that .. I also learnt that anti-nausea on a sub-cut drive worked best of all to stop the actual vomitting

Loopy said...

I'm about to post about chemo - short answer is not started.

Last time on Oxaliplatin and 5FU about half my hair fell out (5FU) so given I'm having that and the Campto the odds are very high that I'll lose enough to warrant getting rid of my 18inches of very fine hair.

Don't fancy having to be hooked up to a syringe driver as well as my PICC - but as I'll most likely be stuck to the bed/sofa if that's also my best option for a couple of days it's no big deal is it?

suze said...

well it does sound as though you're more suscetible to hair loss than I am :( mine didn't change at all with 5FU and fell out a bit with irene

the syringe driver is easy to wear and not uncomfortable, so I certainly thought is was worth it compared to the bad vomitting I had ...