First chemo

Bleugh.

Oh well, it could be worse, it's nice not having the oxyliplatin, and only having to stay in for two nights.

It's also nice coming home!

Still feeling a bit queasy, tho the anti-nausea tablets do keep it down quite well. I'm a bit tired too, tho managed to get some proper sleep last night, for the first time in over a week, so that helps.

This week I've had visits from Andy, Sam, Mandy, Huw, James, Keith, B's mum, David Stretch. Gosh, that's a lot of visitors ... and I enjoy the distraction.

Llandudno Treat

I have tried, several times, to line up these picures with their captions, but Blogger is beyond control sometimes, and determined to move them about.

Perhaps you'll have to imagine this as a puzzle and play "match the caption" if it scrambles them all AGAIN ...

This shows off my new dressing gown and the pyjama top you can just about see:

and the lovely breakfast that come on a tray

and the view down the prom from our window

The size of the suite is more obvious from this angle, with sleepy B on her sofa .

We had some good sunshine on Sunday:

Artistic view of the Grand Hotel .. worth clicking to see it full size.

Hospital Glamour

Went shopping at M n S last week to treat myself to some new pyjamas and a dressing gown. The ones I wore last time are pretty tired and also I'm three sizes smaller, so I would have needed new stuff anyway. I reckon a new bit of luxury will make the fortnightly stays in hospital a little more bearable, so I set off to the shops, giving Primark a wide berth.

It was a good time to go shopping, cos (if you hadn't noticed) it is nearly Christmas and they have got lots more stuff in. I chose some luscious soft stuff in their Autograph range ... warm mink and aubergine colours which I really like.

When I got to the till I thought I'd offer up the gift voucher that people from work had sent me, which was supposed to buy me a few flowers (I'd been told!) In fact there was enough money to pay for the lot. I must admit my eyes filled with tears .. I hadn't any idea there was such a generous gift in the envelope.

I hope they don't mind I didn't spend it on flowers, and it feels very sweet that everytime I'm in hospital I'll have this glamourous gear with me as a reminder of the kindness of the people I work with.

Weekend plans

Brigid and I are going to have a couple of days by the sea this weekend .. to my favourite: Llandudno ... and our favourite hotel there Osborne House.

We stayed there before for my 50th birthday, and we like it cos the rooms are HUGE, well suites really with lots of antiques to give it a proper "country-house" feel. The room we're having has a bay on the front which allows you to look out down the length of the promenade, and is very close to the pier for a littel stroll out ... even if it is raining.

In fact, to ensure walking in all weathers we have bought ski pants, so there is no excuse, we have warm trousers that are both wind and waterproof ! Yay!

I've had my flu jab and will get my swine flu jab later on in the week next week.

Surgeon

Went to see Mrs Hall this week .. she told me about the histology again. 11 or 12 lypmh nodes were taken out and they are all clear, so she was REALLY pleased about it ..

I guess this level of pleased-ness is all very relative, since the whole situation isn't making me feel too great, but on the sliding-scale of things she was expecting to find at this point it's clear she is taking an up-beat view! In short - it could hav been much worse!

New Car

We toddled up to Wigan this weekend and came home in my "new" car. Of course it isn't literally new, but it is only four years old, and looks very new inside! It is a Honda Civic, three door version and with an automatic gear box. It is a metallic blue colour that we can live with!

The best thing about it is that the number plate is only one digit different to B's car number plate. Weird but true -- looks like we got matching plates only without spending any money on it!

Forward Planning

The good news is the histology was back after the surgery and Mrs Hall has got it all out .. clean margins .. always good news. Also good is that they found nothing in the lymph glands ... and nothing in the lumps she thought they were suspicious in my old scar. Three goods!

Dr Adab can't see the point in a PET scan, cos the treatment ... chemotherapy ... would be the whatever any other scan showed. I need more chemo now, because there has been a substantial new growth on my bowel.

The hope is to contain the lesions on my lungs and stamp on anything else that was thinking of growing. He'll review progress with another scan in three months.

I asked him if this was my outlook for the rest of my life, and he said not every other week for the rest of my life, there will be breaks in the treatment, but yes, I can expect regular burst of chemo to contain the metastasis in the future.

The new regime is going to be slighly different. Still 5FU and avastin, but NOT oxaliplatin this time (the one that gives the peripheral neuropathy side effect). This time I'll be getting irinotecan - side effects: chronic gut pain, diarrhoea and if that wasn't enough - you get hair loss with this one too .. hey ho! Actually you can read the whole bloody page on some of these chemo drugs without spotting the bit that tells you what GOOD they're doing you ... I assume they're killing cancer cells ino the bargain.

The only redeeming feature to this is that I will be inside for two nights instead of three this time, and he wants us to carry on living our lives as normally as possible.


Right then.

Oncologist update

I will be seeing Dr Adab this evening. Had a fairly restless night, not consciously thinking about it, but no doubt it was lurking in my mind.



It was in Brigid's subconscious mind, for sure. She had a very vivid dream where someone was breaking into our house and she went down to send them away. Which she did, and then she ran after them to get the keys back. Which they gave to her. The house was full of obstacles, but she was successful in her mission to keep us safe.



She sees this as symbolic of us trying to get rid of the intrusion of cancer into our lives. In dreams your house often seems to represent your feelings about what is closest to you, or your own soul.



It also reminds us of that time when she really did race after a guy who had sneakily stolen her handbag off the back of her chair when we were having a picnic in Park Guell (Barcelona), She somehow knew it was him in the crowds and ran about 80 metres to catch him. She made him give get her bag out of the bag he was carrying and got it back from him. Crazy woman!



This is exactly where we were sitting when it happened:

National Trust Fans

Had a good day out at Sudbury Hall with Mark, Tracy and Luke. We found the pub in the village there suited us, The Vernon Arms, which was just the ticket for decent portions of good pub food at reasonable prices. The last time we went to Sudbury we turned the wrong way out of the car-park and ended up having our worst pub-lunch experience ... so we were nervous!)

After lunch the sun shone enough or us to walk around down to the lake at the Hall and through massive flocks of swans and various geese / duck types of birds (see I'm not taking up a new career as a twitcher!)

We had a good dayout. I am also recommending the coffee at the Hall cafe where we enjoyed a giant cafetiere and shared out Tracy's Thorntons mint chocs, hey ho to the diet resolution ... a great complement to the fish and chips I ate in the pub.

I thought I'd post these photos from an earlier jaunt out to Cougthton Court, we've been to a few National Trust places together this year, and sometimes we have a camera with us. This was just at the end of the summer hols.

1/2 term

Have had a mixed week - pain and discomfort seemed to get worse for a bit, but that seems to have passed now. It's been lovely to have B around, and she has looked after me really well. We've done a fair bit of walking round Trentham and we're making progress on getting my car repaired so we can trade it in and get me my "new" car next week.

B's sister was here at the weekend and we are seeing my brother and family on Saturday. I'm hoping to do some walking with them.

Still no word on the future treatment options. I've been trying to sort out flu jabs and swine flu jabs to get some protection for the future.

one week out of hospital

It's been a busy week, cos in between lazing around and watching TV I've had lots of visitors.

It was helpful to have mum and dad around during the week so B could continue to go to work and know that someone was taking care of me. We also saw my Aunty Barbara and Uncle Cliff during the week plus my bother came up last weekend and B's sister was here yesterday.

Various pals have also popped in to brighten my days, and that has been lovely.

I still feel as though a horse kicked my belly when I walk around much, but I've tried to get out and have been to Trentham three times - it really is a tonic, with the wide open spaces and ancient trees.

It's 1/2 term this week, so the lady wife will be fussing me and making sure I keep moving as well.

No news yet about when I might see Dr Adab to get news of the treatment plan.

Memories

Getting up Mont Ventoux.

This was a challenge I set myself at some point last winter and I kept to a pretty strict diet and trained for hillclimbing so that I would be able to do this iconic climb this year.

Since my last operation (June 2008) I lost five stone! I climbed hills in the Peak District through the winter 2008-9, and did soem good distances in Scotland at Easter and Ireland in June with my eye on doing serious climbs this summer. I did this Mont Ventoux climb in August 2009.

I went 10 miles up it on the day the Tour went past and a few days later did the whole thing, that's about a mile up in the air (1912 metres above sea level) It is 16.5 miles of cycling uphill, with NO downs and no flat ridges. It took me a little over 2 hours 30 minutes. You cannot imagine how great that felt. There are lots of other cyclists there, but very few of them are women, or my age, or my size … even though I lost a lot of weight I’m still big for a cyclist … so it was a good feeling to be strong enough to do it, and pay a tribute to the good job my doctors did on getting me better!

It's a sad to realise that even as I did this the cancer was already growing again. I do so hope they can patch me up again.

My next goal is to do some climbs in the Pyrenees next summer. I've seen the Tour De France schedule for next year and the final week is in the Pyrenees with a Time Trial at Bordeaux. This is near where our good friends Lili and Bouclette live, so I am hoping to spend the first week of our holidays with them, see the Tour and do some Pyreneean climbs myself .... great plan eh!

This is the professional photo, if you click on it you get the large version.

One week post op

I feel very well, considering. The pain is not a fraction of what I had to deal with after my first abdominal surgery, and I feel pretty good. Of course, last time was a much bigger op, deeper into my body and needing a stoma creation as well. Plus I'd been battered by radiation and chemo in the preceding weeks, so altogether lots of reasons for it to be worse then and better now.

Psychologically I am trying not to think what three visible secondaries might mean for me, long term. Spots on both sides of my lungs can only be bad news. I will see Dr Adab as soon as he's had histology results from my bowel tumour. I guess within a couple of week, and then he will be telling me his treatment plan.

I got the impression that chemo was the most likely route, as the spots are small and might go with chemo ..... but there was a passing mention of the option to deal with them surgically ... which is tricky with both sides being involved ... but then I am super-fit atm ...

Whatever, they certainly won't entertain surgery if they get a bad answer to the big unanswered question: are these three just the tip of a metastasizing mountain of mini-tumours seeded all about my abdomen? I'll probably have a PET scan to tell them that.

http://www.macmillan.org.uk/Cancerinformation/QAs/701.aspx



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back home

I'm back, abit sore and tired ... obviously.

Dad, this is the BnB you coudl look at

http://www.kenwoodguesthousestoke.co.uk/

plan ahead

I am wishing I was cycling in the sun with you Malc, but will settle for the memories of the summer in france, which was so great

... and the next year's tour schedule came out this week .. they are doing a time trial near our pals in Bordeaux, so that's next year's summer mapped out!

windy wilde!

Good morning!

Suze is up and walking about trying to shift the discomfort in her belly.

Not as bad as last time though and she'll soon be on here herself reading all your comments and posting again. I look forward to hearing all about them later.

I'm off to work now

Enjoy your day

B xxxxx

LATEST NEWS

Hi, Just spoken to Susan she is feeling fine , has seen three Drs' all pleased with the progress
she has had some breakfast and the staff are just geting her out of bed.
Dad.

GOOD NEWS

Hello every one,
Susans op; took 2hrs' she is back on the ward ,and is ok.

Susan spoke to me and said she is feeling 'chipper' and is waiting to have a race with Brigid on her bike .
She has not had a colostomy bag fitted and is very pleased about that.

I spoke to Brigid and she is HAPPY BUNNY.

The doctor had no trouble removing the tumor it whas on the outside of the intestine, near the join with the small intestine ...  only a part of that needed removing .

Susan will be on chemo again for the two small sites on her lungs, and we all hope that treatment
will be as satisfactory as last time .
Good bye to you all for now, and many many thanks for all your kindnesses and best wishes.
DAD XXXX

monday

wow - the sun is shinging! amazing..

I'm all packed up and ready to go, lots of bags, as usual ..
At least I've not had time to get scared about the surgery this time, with only a few days notice.

I also realised that I've been in the recovery room at the hospital four times before, so not only is FIVE an auspicious number, but I can mentally project myself there already and just bypass the bit where I am unconscious and imagine coming around and being cared for by the nurses.

My dad will update this later on this evening, whenever he gets some news from Brigid.
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I started to re-read this blog last night, but there sure is a lot of it! and that's without reading all the comments.

I love comments, so if you are starting to read again, please don't be shy about adding a few words, just to let me know you're there.

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lots of love

suze xxxxx

Trial run.

Susan , I am having a go to see if it will work, just a one liner first ,here goes!!.