Inspiring Article

Andy’s sister Sarah found this article in this week’s ‘More’ magazine  and we thought it was really inspiring – click on the image to see it full size and read the article.

She’s just so beautiful in this photo and shows that having a bag doesn’t suddenly make you a freak. I wish I could track her down and say how much it means to other people that she’s brave enough to do this. What a legend!

Ses

ps speaking of magazines, Andy was in last month’s MBUK. They sent us a scan of the article but I haven’t put it up yet because the issue was still on the shelves. You can’t buy it any more so I’ll put it up soon. It’s awesome!

Keep Calm & Carry On

The last few weeks have been interesting …

Lots of visits to the GP – Andy’s been prescribed diazepam and amitriptyline to try and tackle the awful stress-induced back pain he’s in. Also, as I’m super-wife, I picked up on the fact that he was anaemic and he’s now on iron tablets to try and sort out his energy levels.

Also had a few trips to hospital – 2 nights for a small bowel obstruction which thankfully sorted itself out pretty quickly. As usual they wanted to discharge him too quickly, but we’ve learnt our lesson and he refused to leave until everything was ok (it wasn’t and it was just as well, he needed another night on the drip)

Also had many visits for a prolapsed stoma – yeah, that was fun! Pretty scary feeling (I didn’t watch!!) the stoma being about
6″ long instead of about 1.5″. I won’t repeat how Andy described it to the nurse!! Andy’s currently still in the QE2 as the stoma prolapsed and it just wouldn’t go back in – the surgeons have taken the decision not to do anything as it’d be too dangerous to do any surgery. So we’ve been talking to Alison (the stoma nurse) about support bands and seem to have found something that works.

Annoyingly due to the swelling in his liver he’s been having a few issues with breathing – his oxygen sats have been dropping to about 87ish so he’s on oxygen and is going to move to the hospice here in Letchworth tomorrow to be looked after for a few days while he catches up on all the sleep he’s lost and the new meds (steroids and whatnot) are sorted out. But even a couple of nights in hospital have really made a difference to his energy levels and he’s looking a lot more awake compared to the last week!

Please keep praying for us, all this back and forth to hospital is getting very tiring and there are lots of fun things planned for the next few weeks that we don’t want to miss.

Ses

9 down, 3 to go and 4 numb fingers

Sessions 8 and 9 are over and done with. Had some developments with the tingling fingers in that after the 8th session the pads of my index finger and thumb on my left hand went and have stayed numb. Having told the oncologist they reduced the dosage of the Oxyplatin. Even with the reduced dose session 9 saw the same fingers on my right hand develop the same problem so it looks like that’ll be the end of me getting that drug as once nerve damage starts to occur if not stopped immediately then it can become permanent. Luckily that drug only has a minor part to play in my treatment as it’s the 5FU that’s the main drug and the Oxyplatin often has to be reduced or stopped mid treatment. I’ve done pretty well to get 3/4 of the way through before having to stop it. The advantage of it stopping is that it should cut the time I’m in hospital on weds from about 4 hours to 2 hours. It’ll also mean that I stop getting the tingling in my fingers and the hypersensitivity to cold.

Other than the numb fingers the past two treatments have been good, with minimal side effects other than tiredness. My hairs looking a bit on the thin side, but isn’t too noticeable other than to Ses, me and a couple of close friends.  It’ll be interesting to see if it grows back normal colour or grey as the colour creating parts of the follicle can take longer to recover and result in grey hair for a bit.

 

The past few weeks have been very hectic and draining as we’ve bought our first house and have been completing and moving into it.  Who knew you could fit the amount of stuff we have into a 3 bed flat, we’re living amongst boxes for the time being and sorting a few a day.  The DIY list has been growing too.  I did finally start ticking things off it though and have put a light and a couple of boards up in the loft so we can put a few bits up there now.  I also changed the tv aerial so we’re back to full freeview rather than having the choice of 6 random channels the old one picked up!  All in all we’re very pleased with our new home and have some big plans for it’s future seeing as it’s not seen much love over the past 10 years.

 

I also got my trials bike back up and running, whilst some may say I’m mad, it’s good as it means that I can do some gentle exercise that doesn’t require lots of cardio and will help build up some muscle again.  I have to be careful due to the ease at which my left shoulder falls apart but I can do low down stuff without too much risk.  I’m off to Chicksands again tomorrow with a couple of mates, should be a good laugh and will get me doing a little exercise again.  Roll on the final chemo session and with it the start of the half marathon training!

 

Better get going as there’s hooks and curtain poles that need putting up this evening!

 

Andy

Half way through and some cheeky biking

I’m sitting here, chemo session 6 is now done with, which marks the half way point through the chemo.  Oddly enough this session has seen the least side effects so far with less hiccuping than previously and I’m actually feeling pretty good.  I guess this is partly down to me now being back at work full time and so not increasing the amount of working time like I have after previous sessions.  The advantage of this was that last weekend I managed to get back on the bike for the first time in over a month.  I’ve not really had the energy to try to do any xc, so instead decided to enter a downhill race!  Having not ridden at Aston Hill before but hearing how good the track is that was where I decided to race (I don’t think the other race this weekend, the World Champs in Canada, would have taken me anyway).

Not wanting to go into the racing cold from a month off the bike I went up to Chicksands on the Saturday with some of the old uni biking group.  Much fun was had and there was some good manning up on the large jumps and drops.  The day was nice and chilled and got me back into the mood for launching off things and going fast, we all arrived back at the Hill house and were treated to a huge pot of pasta and spag bol thanks to my lovely wife  Carb loading and biking DVDs watched we all packed the guys into the spare room and Em on the sofa and got a good nights sleep.  The Sunday also proved to be another good fun days riding with Tic coming up from Salisbury to race too a bit of friendly competition and banter couldn’t be avoided.  My targets for the day was to not finish last in Senior and to do a run in under 1 min 30 seconds.  Both of which I managed, finishing 76th out of 88 Seniors with a 1.22 in my second race run, beating my first by 3 seconds  The track was fast and fun and there are plenty of different runs and an xc course so I’ll definitely be heading over there lots more times in the future.

Riding DH with an Ileostomy? Am I mad?  The simple answer is yes, the better answer is no, I’ve got my ostomy armour through.  It’s really well made and meant that I didn’t worry about crashing and damaging it at all.  The story of the ostomy armour started when Ses was looking for something to protect my ostomy whist allowing me to keep doing extreme biking.  The stuff available in the UK is frankly pathetic and comprises of an upturned plastic cup which you strap around you.  Not only is this bulky but doesn’t exactly offer much protection or comfort.  The search widened and Ses found a company in the US who custom make impact resistant ostomy armour that looked to be not only more protective, but also more comfortable.  After Ses mentioned this to some of my friends from church they did a whip round and gave me the awesome present of more than enough money to buy the armour.  Massive thanks to you guys and gals, your absolutely wonderfilled  If you’re interested then check out the website, http://www.ostomyarmor.com/ the guy behind the company is fantastic and custom makes each set of armour to fantastic quality.

And finally…. I think part of the reason for this session seemingly being the best so far has got to be down to the nice chilled out evening round at Sherlock’s house last night.  Such good tasty lamb and a nice warm fire in the fire pit outside was a nice change to the usual moping around inside at home.  Think I’ll be trying to do something similar every chemo Thursday.  Cheers mate for a most enjoyable and relaxing evening!

Andy

And to finish a few pics of the riding at Chicksands

Working full time, golf and biking

Well I’ve finally managed to get back to working full time.  As of Monday (and following the 5th chemo sesison), I’m back doing 7.5 hours a day for the non chemo days.  I’ve been ramping up at an hour extra per day after each chemo session so the jump from 7 to 7.5 hours is smaller and hopefully will mean I’m not too tired.  My plan now though is to work longer on the days I’m in to try to keep some holiday left over to have as a contingency should the chemo get worse or to have the time after my last session mid December until Christmas as holiday.

We had a nice long weekend, Saturday was a write off due to me being really tired so was spent mostly in bed or on the sofa watching tv!  Sunday we had a nice BBQ at my sister’s to celebrate Dad’s Birthday.  Got to see some of the family I haven’t seen since being in hospital which was nice.  Then had another relaxed BBQ with some friends on the bank holiday Monday, lots of laughs and a really chilled out afternoon

I’m really looking forward to the coming weekend as I’ve entered my first dirt based DH race at Aston Hill.  Now I’ve got the stoma armour from the US I’m going to be doing mainly gravity based riding until the chemo ends as any xc just knackers me out too much.  Not coming last is my aim, but really it’s a bit of fun with some of my riding mates I haven’t seen for a while.  On the exercise front the only real stuff I’ve been doing recently is playing golf, which means a 6-7Km walk per round.  My scores are slowly coming down with me scoring my best round of 110 two Sunday’s ago on a round of Panshanger with Sherlock.

Andy

Still Here!

Still here, still going strong! Sorry for the total lack of updates, we’ve been busy and it’s been hectic. And Andy’s written a couple of things which the computer kindly lost for him!

We are now on round 5 of chemo and so far things haven’t been too bad.  We go in to the Cancer Centre in Elstree 0n Wednesday mornings; they take blood and give Andy fluids while waiting for the test results. That takes about half an hour and then he has one drug with lots of anti-sicknesses and steroids on the side. Pumps in for 2 hours while we have lunch and watch TV and he relaxes in the amazing leather loungers the patients sit in and then they plug him in to his infuser which he goes home with. It’s basically a plastic jam jar with a balloon full of poison in it! But it does the job and it’s wonderful that he doesn’t have to be in hospital for 2 days!

Side effect wise Andy has had the hyper-sensitivity in his hands which means he can’t deal with cold things for 5ish days after the chemo starts, apparently it feels really painful, like someone’s coming at him with a fistful of needles! He’s also been developing hiccups about 24 hours into each treatment which stick around for a day or two, and also his hair is thinning a bit. Plus he’s really, Really tired a lot of the time. But that might be more to do with the fact that he’s now almost back to work full time and is playing 2 rounds of golf most weeks!

We saw the Oncologist on Tuesday evening and he’s really pleased with how it’s going and Andy’s blood results which is great news. There’ll be another CT scan to come, but that won’t be until the beginning of January.

We also went to the Colorectal clinic to see Helen, the specialist nurse, and have a check up. She was happy with how his wound has healed up and said it’s ok to start massaging the scar (to keep it soft/help it fade) now. She did tell us that if Andy chooses in a few years not to have his ileostomy reversed that the rest of the ‘plumbing’ in there (anal canal, rectum etc) will have to come out to stop cancer reoccurring there. That’s another major surgery which isn’t something fun to look forward to, but it’s a long time away.

On the topic of the ileostomy everything seems to be going well there. From my perspective (and he hasn’t told me any different) he’s coping really well with it. He seems happier, coping better with day to day life with a stoma than he did with colitis, and just as confident as he was before. Our relationship, although tested by this, is stronger than ever. If you’re reading this and you’re a stoma patient or the partner of one and want to talk about stomas and relationships and sex just drop me a comment (the form asks for your email address) and I’ll send you an email. I’m not going to write about it here right now because, well, my Mom reads this. Ha!

There’s more to tell about the last few weeks, such as a couple of trips to A&E, but they can hold until another day because it’s 3am!!

Ses

1st Round Down and Back To Work

The first chemo session went well without any really major side effects.  I had the expected hypersensitivity to cold things in my hands and mouth for a couple of days and also had hiccups, which are apparently common too, on the Friday and Saturday morning.  All in all though I’m pleased with how it went and how I felt.  I’ve been warned that the side effects get cumulatively worse with each treatment, so we’ll see how things go, however other than a slight loss of apetite there was no sickness  Also my thoughts on what the diffuser would be, which slowly pumps one of the drugs into me over a couple of days, was completely wrong!  I imagined it would be a battery powered unit that had the drugs stored in it, whereas it more resembled a small jar with a balloon inside it.  The bladder contained the drugs and the pressure of it being inflated slowly pumped the drug into me.  As it’s so compact I should be able to work on the days I’m plugged in which is a bonus.

Speaking of work I started back on Monday.  I’ve initially been signed on to work half days which will prevent me getting too tired, however I’m hoping to ramp up my hours quite quickly as the side effects and hence my ability to work, may get worse as I get towards the end of the sessions.  It felt good being back in the office, not least as it has got my brain back working after 3 months of idling!  I spent the first day getting everything back up and running as a lot of stuff is automatically cleaned up if not used for a month.  I’ve got a nice meaty chunk of work to get my teeth into now, so I’m looking forward to getting back into coding

And finally…..

Having been on a high calorie diet for coming up for two months I’m now up to just under 12 stone, a little more than I was aiming for but I’ve been told by the oncologist to keep it up as I’m likely to loose my appetite later in the chemo program.  I’m also getting out on the bike a lot more now so will hopefully turn most of the gained weight from fat to muscle

Prayer Pointers

Goooood evening all, just going to do a quick post with prayer pointers for those of you praying for us. (We love you guys!)

- We get the CT scan results at some point in the next couple of weeks. Please pray that they are completely clear and there is no more cancer anywhere at all.

- Andy has a sore next to his stoma from where the stitches were rubbing, it’s healing, but slowly. Please pray for that, and that everything with the stoma would continue to be OK.

- He currently has 4 wounds that aren’t healed – at the top and bottom of his original incision and the 2 from the portacath insertion. Chemo cannot start until they have closed, please pray for accelerated healing, especially the one in the middle.

- The portacath insertion on Tuesday went really well, he doesn’t have any bruising which is great and not a lot of pain either. Praise God for that!

We have received several Words from people who have been praying for us in the last few weeks – very positive ones about it all being OK and God being in control which has been really encouraging for us.

I will aim to put pictures up from our holiday in the next couple of days, wanted to do it today but the garden had gone out of control when we were away so there was lots to do!

Ses

Back on the bike

Well it’s been over 2 months since I was last on a bike and I’ve been really missing it since reading about 20 biking magazines in hospital thanks to Sherlock. I had a sit on my bike a few days ago and the wound felt ok so I thought I’d give riding it properly a go. I only went out for a quick ride around the local woods but It felt so good to be back out and diving between the trees, even the pedalling felt good!

I also had a nurse appointment rhis morning to change the dressings, the top wound is looking very good now with several layers of skin grown back and seems to be leaking a lot less and felt fine while out riding.

We had a trip to the Spire at Bushey yesterday to have a CT scan (looking for any more lesions in my chest) and blood test (ready for the sperm banking). I had to drink over a litre of aniseed tasting water in about an hour, the flavour was ok to begin with but seemed to cumulatively build up in my mouth, making the last couple of cups quite horrible! The scan went well and I should get the results in a few days.

We did a bit of shopping today too and I managed to find a couple of new pairs of shorts so can stop wearing the same pairs I’ve been alternating between for the past 3 weeks. We also (finally after much searching and a trip to Stevenage) found some maternity bands to wear to support my bag, so it doesn’t move around when I’m doing exercise and also will cover it up when I take my top off on the beach etc.

And finally……
We’re off on holiday tomorrow! Only for a few days but it should be a nice break, we’ve both spent a lot of time in the flat since coming home from hospital so it’ll be nice to have a change of scenary. The new scenary will be in Southwould and the surrounding areas. Hopefully the weather will be nice and we can spend lots of time on the beach and walking around the town, perhaps sneak in a brewery tour with the obligatory tasting session at the end

Andy

A quiet week from a medical point of view

Having spent the past two months in and out of doctors surgeries and hospitals it was nice to have a quiet week with no significant medical visits to speak of! I’ve been to my local doctors practice twice for nurse appointments to change the dressing and monitor the wound, but they haven’t thrown up anything major and the wound is healing well. There’s one section at the top that’s opened up due to it being under lots of tension and it’s also the point where it’s been leaking which has meant it’s been moist and didn’t heal while the staples were in (the following link is a picture of the open bit so be warned it’s quite graphic! click here ). Over the past few days it’s started healing well though and now has the beginning layers of skin forming.

The week started amazingly with Geoff coming round and dropped off a collection from several of the people from church which is amazing and will be spent on the ostomy armour from the US which includes a kevlar/carbon fibre stoma protector and kevlar reinforced bag cover. That should mean I can keep downhill biking without the worry of crashing hurting the stoma or tearing the bag! We also had a couple of people from the prayer team come round, we had a good pray and they had some good positive words and pictures which was nice.

Last weekend we had the family up for Mum’s birthday. Andy came round and gave us a hand cutting the grass beforehand due to the council being rubbish. Cheers Sherlock! We had a very enjoyable day with Mum, Dad, Sarah, Gordon and Rob all sampling Gordon’s tasty BBQ cooking. Sarah also did a lot of the other food which took the strain off us hosting too much, thanks big sis! They also brought along some boules which made for some entertaining games on our far from regulation lawn, with many comedy bounces on the bumpy surface.

We’ve been out several times including a picnic and walk round Stanborough lakes, several trips into town, watching Gaz’s team win at cricket up at Essendon and a nice meal out in Ask in town! All in all it’s been a good week and I checked with the insurance people today and they’ve said I can drive now so that’s another positive.

and finally……….

Whilst being able to eat whatever you want whenever sounds great it’s starting to get difficult to remember to eat ALL the time! I’m trying hard to keep my food intake up and finding slim fast on a half price offer in boots helps as that’s essentially an additional meal (I have it with full fat milk rather than skimmed). I’m finally digging into the easter chocolate supplies, having missed out on eating my easter chocolate at the time due to the stomach cramps etc, I’m making up for lost time now!

Andy