Sunday, 27 January 2008

2008 Jan 27th - Joining the Gym

I've had a busy few days lately and that includes joining the gym. I've got sixteen months for the price of 12 and no joining fees so I figure while I've got some money, why not! I need to get out of the house and get into some sort of routine and I desperately need to get strong again. My muscles have wasted away so badly that I could only manage four minutes on the bike for the fitness test and my legs were aching and wobbly most of the afternoon and evening and I was so tired after just that and a few sit ups! Mind you I did have a rotten head cold at the time.

My lung function and BMI are fine, needless to say my muscle strength and everything else is rotten including my body fat ratio. Still, not much point going if it's all good is there! At least I'll get to see how much I've improved in a few months.

I've got a few more appointments for February now:

6th Feb - scan to check there are no new tumours (small sentence, BIG DEAL)
11th Feb - pre op checks (assuming no new tumours discovered else the op is off)
19th Feb - appointment with surgeon for a "visual" check on the joins and j-pouch
22nd Feb - surgery and a very UNtearful farewell to PTW

In the meantime I'm filling my days with gym appointments. I had to do my program plan in two sessions because of my cold - I nearly passed out after 5 minutes on a sit down bike and 5 minutes on the rower. I was just stood on the cross trainer and oooer missus I got the shakes and hot and cold sweats and had to go for a sit down. I had drunk nearly half my litre bottle of water by this point too so it wasn't dehydration.

I finished the plan off today with the trainer and went through which weight machines I can use to start with and she showed me some floor exercises to do - some with a giant ball - which will also help to strengthen my abs and legs since these are the weakest areas after lying around for the last year. I felt much better today and did a few lengths in the pool and too Phoenix with me - he persuaded me to sit in the spa which was GREAT! Never been in one before but it was lovely and warm and my hands and feet were much less "fizzy".

Despite having been out on Saturday night with Team Ferrer et al. I felt pretty good and had a very healthy salad with smoked salmon and feta cheese.

Monday I've booked in for a relaxation/toning class (all classes are included in membership) and Thursday for aquarobics in the evening and I'll do the gym on Tuesday, Friday and Sunday. It's a good set up because you can book any of the classes up to five days in advance and don't have to go to the same ones at the same time or even day so less chance of getting bored or missing anything.

I've got four weeks before surgery and I want to do something constructive. This year is all going to be about getting BETTER. Last year was killing cancer, this year I'm recovering from it. Unfortunately that means returning to work but I'm hoping that will be easier if I'm fitter before I go back.

I talked to my boss on Friday to make sure that going back part time was an option (they have to try to accommodate me, it's the law) so that's all sorted. I managed to have a chat with most people I wanted to see, those who haven't left at least! I got a lovely pep talk from G***** and a hug (that was the best bit) who's had way too much cancer and death in his family already and told me back in the days before Tyson was discovered that "cancer is going to be scared sh*tless when it realises who it's up against, it'll give up". He also told me I'm the only woman he knows who has bigger balls than him...............ahem. I hope he meant metaphorically and that my bag wasn't just a bit too full!

I'm off to bed now at a reasonable hour for a change - must get up in plenty of time so I'm not late for class tomorrow.

Saturday, 19 January 2008

2008 Jan 19th - New Year, New Surgery!

19 Jan 2008

Where did the last month go?
Category: Life

Blimey, I knew I'd not been posting much lately but it's nigh on a whole month ago!

So........what's been happening. Well Christmas can I put this....painful. Emotional. Glad it's over. I stupidly expected that after the last couple of years this one was the one I deserved and that everyone would be happy and it would be great. WRONG. I'll never learn, always build it up to something that it can never be. New Year's Eve was better (see photos) but by 'eck did those tears make themseslves known come midnight. I got through Auld Lang Syne and that was it, flood gates opened. Yes I do hope I have a great year, but I know that there is no magic wand that gets waved at the stroke of midnight to wipe all the fear and worry and current family troubles away. I'm being a bit grumpy about it, actually the night was great. I was with people who cared about me and who I care about and I ate too much and drank even more, even managed to throw a few shapes on the dancefloor. This was despite the horrid painful feet and toes (yeah cheers for that chemo). I only managed one song at a time then had to sit down for two or three, but alcohol did numb it a fair bit. Good old G&T eh?

So this year is the final stage of treatment, hopefully. Always with the hopefully, nothing is ever concrete is it?

Last week I saw my life saving surgeon who said how much better I was looking and what a difference he could see in me (yeah finishing chemo, amazing what it does for you). He's on hols in March so it was either third week in March......or third week in brainer! Surgery is now booked for 22nd February. I don't have to go in the night before and be stabbed to death or starved first, just roll up mid morning and then a short five day stay. He went through the usual risks involved and possible complications and that he may need to open up the whole ten inch wound again if there is scar tissue or adhesions but otherwise, just a two inch scar. I can't wait..........oh hang on........then I get so sit on the loo for hours at a time and my radiated butt already suffers when it's having a clear out of mucous from my colon. Lord knows what sort of pain I'm in for with diarrhoea. I've seen and felt the pain of macerated skin on my tummy (only yesterday in fact) with diarrhoea from my stoma. Eek. Still, means to an end and all that. I'm being spurred on by the upcoming joy of being able to wear anything I want and not worry about leaks all down my front. Faerie, I'm thinking visit to Mancland and a shopping frenzy, what do you reckon?
At least I can "nappy up" down there and it's a bit less obvious than a swelling bag when I've eaten onions or been drinking anything fizzy. I'm doing pelvic floor excercises as I write. Less than five weeks to go now! I have a huge stock of skin barrier wipes which I'm hoping will make things a little more bearable.

I saw my GP this week and got another type of anti-depressant to add to my rattling stock of drugs. I'm on SSRIs for depression and now tricyclics which he hopes will stop me feeling the pain of the nerve damage which HOPEFULLY (that bloody word again) will be cured by the Pyridoxine. Oh and I confessed he was right about the HRT, I'm doing great on it. I don't know if it's finishing chemo or the HRT or a combination of the two but my hair has gone from straw to soft and silky feeling again. I still have patches of what looks like cradle cap but I can live with that. The only problem being that when I scratch it, because the ends of my fingers are dead as dodos I scratch harder and make it bleed.

I've discovered just how damaged my nether regions are by the evil radiation (I say evil, I know it shrunk the tumours and I know it may have prevented a recurrence but by god it's a price to pay). Again there is hope that it may improve, but no guarantees.

I saw the Lone Ranger too, my 6 week post chemo check up. Discussed the nerve damage, yeah yeah, hopefully it will be gone, may take a year.........yadda yadda. I'm to have a CEA test (oh and FBC, Us and Es too obviously) every three months and see them for results every three months for the first year, then every six months...........til I get cancer again........doh I mean til I'm five years clear! I told him about the surgery and he was surprised no one has already arranged a scan (they don't really want me having surgery only to find out later I have more cancer and have to go through the whole sorry process again) so he's trying to rush one through in the next three weeks or so. Trying not to think about that.

I've been pushing myself a bit too much I think, visiting friends and family all over the country.......well the furthest was Derby but it's a long way for me! I'm now laid up in bed feeling shattered with a thick foggy head, sore and glandy throat and aches and pains. Of course it could just be dehydration, my tongue is constantly cracked like a dry riverbed and I know I'm not drinking enough, I just forget now I'm busy flitting about here there and everywhere. So bed it is this weekend, no visits or visitors, just me and the Skittles curled up in bed (on the bed in his case on the proviso he does NOT wee on it again EVER).

Has any one else fallen in to the "yeay chemo is over, lets try and do all the things we couldn't do the last six months all in a few days" trap? Yesterday I went, with Umpa, to have a tour of the local gym with a view to joining for some kind of social life and for me to build up my fitness again, before and after surgery. I was knackered, my throat was sore, I ached and felt lousy but pushed myself (and the poor Umpa) to visit DIY stores YET again to look at lighting for the living room and then went back later to buy some. Why? I've not even got the living room ceiling paper off yet, it's months away from being ready for the lights to be changed but because I CAN I wanted to do it. I'd have been so much better off in bed, resting.

Better late than never, I'm off for a snooze now, nanight xxxx

2007 Dec 21st - Feeling Better! Looking Forward...

Friday, December 21, 2007

Ho Ho Ho
Category: Life

Hmmm. I've not got much to say for myself lately have I?

Chemo all done, still waiting for a follow up oncology appointment to discuss where I go from here with regard to checking for new tumours that the evil chemo cocktails may have missed. Instead I get Christmas cards and parcels and nice things, can't complain really!

I was thinking about looking back over recent blogs and trying to pinpoint exactly when and what combination of events triggered the recent upturn in my fortune and general mood. Then I decided - that would be silly, don't question it, just bask in it while it's here. So I am. I've finally been awarded the benefits I claimed for months ago and because I scrimped and saved during the months I was waiting for an outcome I'm reaping the rewards and so are the kids. They've never been spoiled by me at Christmas, or at any other time, but always got something they wanted. This year for the first time I can give them some presents and some cash and we're off on a jolly shopping trip in the county's capital to bag some bargains in the sales! I can't wait to come back loaded up with bags of clothes or whatever they decide to buy, that's the best bit about shopping - getting home with it all and spreading your goodies all over the living room/bed.

2007 wasn't all bad. I discovered who my real friends are, those who can cope in a crisis. I discovered that people you think really care about you sometimes remain selfish despite everything and that I don't need to allow people who have made and continue to make me unhappy into my life. Sounds simple but it's a big thing to get your head around when you're staring down the barrel of cancer's gun. Most importantly I've realised just how strong I am, and more surprisingly how strong my little Umpalumpa is. Some bonds just can't ever be broken, only strengthened and ours is one of them. I've said it before and I'll say it again - I LOVE YOU SIS AND THANK YOU.

I've also made some fantastic new friends, brought together by a common disease. Never underestimate the power of shared pain, concern and goodwill. The support we've shared, and it has been shared I believe, must have helped with our recoveries I'm sure. Just knowing there are other people out there having sleepless nights, sharing your fears, hopes, concerns and thinking up the same questions. 18 months ago I ran the Race for Life in memory of June Urry. For most of the time since I've been running a different kind of race for my own life and mental health. Thanks to the Macmillan forums I've not had to run it alone. The Bum Bandits are always on the sidelines cheering me on, some of them have already reached the finish line and some are way behind me. Every so often someone takes a tumble and needs more than a little TLC to get up and carry on but it's always there, almost on tap.

My children seem to have come through this year pretty well. There haven't been many tears, which has been a worry in case they've been bottling things up. I'm pretty sure that because I've been mostly gung ho about this whole cancer thing that they've either gone along with it by following my example or I've managed to play everything down sufficiently to allay their fears.

I think Santa really did read my letter you know, because he sent me a very special early present on top of the magic blood results for my last chemo. It feels so good to smile.

15:51 - 9 Comments - 8 Kudos - Add Comment - Edit - Remove

janey jane jane

HERE, HERE...a magical end to Christmas for you...may it continue for years to come. Love you lots cousin...xxxxx

Posted by janey jane jane on Sunday, December 23, 2007 at 23:14
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Lisa Left Eye Loopylalalalala

Yay! No Bah Humbugs from me this year - We'll be over to see you all VERY soon! xxx

Posted by Lisa Left Eye Loopylalalalala on Sunday, December 23, 2007 at 23:19
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I always read your blogs, and often feel 'teary eyed' but it's happy tears this time, happy because you didn't let evil Tyson get you down and happy because I have you in my life.

I don't feel strong but agree totally about our bond, it's something i'll always treasure.

I'm sooo proud of you Sis xxx

P.S. Your pressie from Santa is fab!!

Posted by Umpalumpa on Sunday, December 23, 2007 at 23:14
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Lisa Left Eye Loopylalalalala

I don't think heroes think they're being brave, so just cos you don't feel strong doesn't matter ;o)

Posted by Lisa Left Eye Loopylalalalala on Sunday, December 23, 2007 at 23:20
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Lisa - so happy that your smiling that beautiful smile hun - i'm certainly smiling with you. A very merry christmas to you and yours. Caz xx

Posted by Caroline on Sunday, December 23, 2007 at 23:14
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Lisa Left Eye Loopylalalalala

It's a long old journey Caz my friend but it's been made a lot easier having people like you along for the ride

Hope to see you again soon in the New Year, meantime I'll be jealously imagining you sipping cocktails on a beach in the sun! xxx

Posted by Lisa Left Eye Loopylalalalala on Sunday, December 23, 2007 at 23:23
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Now I feel all fuzzy and warm, good for you Lisa!

Here's wishing you and everyone who is important to you a fantastic Christmas and a Happy New Year.

Posted by carol on Sunday, December 23, 2007 at 23:15
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Lisa Left Eye Loopylalalalala

Oh good! I'm pleased I finally managed to write something that makes people feel good and not sad!

Jolly Seasons Greetings to you and yours too Carol xxx

Posted by Lisa Left Eye Loopylalalalala on Sunday, December 23, 2007 at 23:22
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So glad to hear that you're smiling at last, wishing you a fab Christmas and a brill New Year!

Mandy x

Posted by Mandy on Tuesday, December 25, 2007 at 12:51

2007 Dec 6th - Last chemo!

Thursday, December 06, 2007

And now.....the end is near....and so we reach .....the final CHEMO!
Category: Life

I feel like Arkwright at the end of an episode of "Open All Hours"........

It's been a funny old week. If it was a tarot reading the Death card would definitely be in it somewhere.........the end of one phase and the birth of a new one.

Monday was Beating Bowel Cancer comedy night at the Comedy Store in Picadilly (London for all you northern cheeky monkeys, who think that's yellow stuff in a jar). I put on a frock, some legs, my new boots (superb bargain under £20 with more than a hint of FMB about them) and some jewellery. My hair underwent the GHD/After Party treatment and Beckie came by to take me to my final "am I fit enough for chemo" blood test .........or so I hoped. No stroppy women in pathology this time and then it was back home to await Thomas the Tank's stunt driver (Mike) who was moonlighting as our chauffeur to Laaaaahndan. Actually he was on the guest list, but stupidly volunteered to drive!

In true grown up stylee I littered the entire journey with criticisms of Mike's driving (so he could taste married life without the expense of divorce) demanded we stop for a wee wee, food and whiny requests as to whether we were "there yet".

Cockfosters for free parking (thank you blue badge), freezing cold train station and about a zillion stops later we arrived at Covent Garden.............not before having an emergency stop at Arnos Grove.

Mike wanted to stop at Arsenal on account of I have Nil Arse (think about it) but my bag was about ready to explode, it was making me look like Sigourney Weaver, with hair and make up, in Alien. In desperation I flashed my "the bearer of this card has a medical condition.............needs to wear medical appliance........toilet............URGENT" card at a small, unchatty rail employee who silently unlocked the female staff toilet.

Emergency bag contents running down my tights into my beautiful new boots!

Back onto the tube, chilli con carne for me in the Garden (it's relevant it was red meat). Met Angela and headed for the venue.

Firstly I spotted Faerie, hard not to she's got a mahoosive grin! A very teeny weeny umpalumpa sized Faerie she is too, hugs for her and a much healthier looking Caz than I expected!. Lizzy, another bum bandit, (s)mother and Katie from BBC.

Managed not to cry, was quite keen on getting to the bar to be honest! Stupidly FORGOT to get photos which was just soooo dumb, but we all forgot so blaming the excitement!

Faerie and Caz did their speeches without fluffing, falling off their high heels, the stage or any wardrobe disasters. I just about held back the tears and had a little sister hand to squeeze when it was hardest.

Three beers, some wedges and dips, four comedians plus a very nice compere, later I was stuffing a MacDonalds down my face (more red meat) including a Festive was the beer alright?

After picking up one of Mike's friends and her suitcase after her holiday we were at last on our way home, tired and weary but having all had a jolly good time. I got to bed at 2.49am........I arrived at the chemo suite Tuesday morning at 9.03am.

After four paces into the chemo suite Lisa (the sister) said "You look gorgeous........don't go any further". Oh SHIT. Here we go again. My neutraphils were still at 1.3 as of Monday afternoon. Now considering the length of time and amount of injections I've needed to stay just above 1.5 we were all resigned to me failing the test after only a few hours. All was not lost though, onco Tom said if it was too low that was it NO MORE CHEMO for me, we'd just abandon the final one. After proclamations of love for Lisa, Tom and the entire nursing staff we trotted off to pathology again.

Now by this point I was almost bouncing off the ceiling with excitement because it meant I could be spending the day with my "special chemo guest" without the evil drugs and WITHOUT the PICC line when my blood test came back at 1.4 or something.

Lisa didn't change my dressing, expecting to be removing my PICC line. Ray appeared with the A4 white sheet containing my blood report........get this.........



I thought he was winding me up.....or got someone else's results......after believing I was going home never having chemo again, to be told I was fitter than ever and would be having this one more treatment was very weird. The only conclusion we could come to was laughter, beer and red meat had bounced my bloods more than neupogen could, or maybe it was the excitement of meeting bum bandits, my special guest, being with the three people who have done the most for me this year (Beckie, Angela and Mike), the excitement of completing another round in the boxing championship against Tyson.


Special guest arrived and swapped duties with Beckie, getting me tea and minstrels and generally making me laugh. Lisa had brushed her hair specially for the visit!

Back home for take out pizza! Not recommended for chemo patients but I was riding high on the blood results and general good mood and company, and was too lazy to cook.

Fast forwarding to today. I bought cakes for the nurses (two each) and sat and waited til they were ready. I didn't need a seat, just the bed! I gave Lisa a hug who seemed really small all of a sudden and she said she'll miss me. My eyes hurt a lot from the tears (stupid side effects). I promised to pop in and say hi whenever I was visiting for check ups. I took a couple of final photos of my right arm whilst I waited for Izzy which are in my Cancer Fings folder.

Not knowing quite what to do next I ordered a bouquet of flowers for my special little sister for all she's done over these chemo months, not just the driving, I think that was the easy bit - we just had an excuse to sit around chatting and drinking tea. It was more for the support, the housework, the offers of help repeatedly even when I repeatedly turned them down until I gave in and admitted, yes I do need you. It was for the unlimited supply of chai and sympathy, the ironing, the child care and sounding board. A comparitively small gesture, a bouquet, an orange Options sachet each and a packet of hob nobs for her tea break at work, but it was all I could think of in the chemo fog.

Feeling very sick today, a bit lonely but now I have a warm feeling where there was just a cool feeling of hope before.

Slept a lot this afternoon and have that "I just swallowed a whole apple and it's stuck in my throat" feeling that won't go away, spazzy hands and dodgy vision that day three usually brings.

I've missed a few bits out......but those of you who know what I'm talking about can always message me privately for gossip and details .

I still find it hard to associate myself with cancer sometimes. Since I turned a corner mentally I don't feel like a patient and I've never felt like a victim but should I keep reminding myself I've been through some serious shit? Part of me wants to forget but another voice says, bury this at your peril cos it'll come back and bite you on the ass all the harder if you do.

I'm sure I've said this before, but I'll say it again. I would rather go through my surgery again than chemo. It comes second to radiation, not least because I am still suffering from the damage from that, not to mention the menopause etc.

With surgery you improve daily, maybe fall back a bit, but always in an upward trend. Chemo is a downward trend of ever decreasing peaks and ever increasing troughs. It saps the very will from your veins to do or think anything on a regular basis. Looking back I'm glad of the blood troubles I had now it's over, it meant I had additional recovery time and subsequent treatments didn't hit me as hard.

The desperate lows I had in my hospital bed after I left critical care, where I couldn't eat, wouldn't eat, didn't care about the fact that I couldn't eat. I've had those on chemo. The tears of hopelessness about my new body, the unfit, unnatural one that replaced the relatively well cared for one I had before - had those on chemo. Lethargy, nausea, depression, cold sensitivity, leg pains, hip and knee pains, lack of balance, dehydration, poor nutrition, diarrhoea and leaky bags.........none of these things are condusive to excercise or maintaining muscle tone.

But it's over, I am saying every mantra and doing every mojo dance in my head that I NEVER have to go through this again. I'm doing the same for all of you who are still in the middle of it or about to start. Hang in there.

Chemo 19th February 2007 - 6th December 2007 RIP.

22:15 - 7 Comments - 6 Kudos - Add Comment - Edit - Remove


True words. Love you more than ever.

Posted by Peter on Friday, December 07, 2007 at 12:44
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Lisa Left Eye Loopylalalalala

Oh Moley, Moley, Moley. How do you keep reducing me to tears with just a few small words. Hang in there. Love to Mrs Moley too xxx

Posted by Lisa Left Eye Loopylalalalala on Saturday, December 08, 2007 at 00:29
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CONGRATULATIONS Lisa on finishing the wretched chemo! Well done hun its time to celebrate!
It was so lovely meeting you at long long last on Monday - we didn't get much chance to have a natter, but at least I got to give you a hug. You look so amazing Lisa - your a very beautiful woman and your sure looking good and so well considering what your have been through! But then again, all of us are looking well! The inside is a different story, but we are all healing slowly but surely!
The Comedy Store night was a real tonic and I've not laughed so much in a long time - it was the laughter that boosted your little cells my friend - cos I think they boosted mine! Felt very energised on Tuesday! LOL xx

Posted by Caroline on Friday, December 07, 2007 at 12:45
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*Eyes leaking......*

I'm so proud of you Sis, you are amazing.


Posted by Umpalumpa on Saturday, December 08, 2007 at 00:18
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Bad Fish

I laughed (especially about the experience of marriage without the cost of divorce bit), I cried, I cried again and then I nodded a bit ... congratulations and yah boo to that nasty chemo. Hopefully you'll be tasting everything as it should be by Christmas and things will only get better. Hugs and more hugs to you and Becs!

Posted by Bad Fish on Monday, December 10, 2007 at 19:37
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bless you loopy - this is a very moving piece of writing. Thank-you for sharing it this way,and I send all the love in the world for a brighter future for you and hope for all us "patients"

Posted by suze on Thursday, January 17, 2008 at 00:20
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Lisa Left Eye Loopylalalalala

I'm such a twit Suze, just found this waiting to be approved in my in box - doh.

And right back at you xxx

Posted by Lisa Left Eye Loopylalalalala on Thursday, January 17, 2008 at 00:29