Thursday, 27 May 2010

Day 168 - Thu 27/05/2010

Had my pre-op assessment!

Went really well today (apart from the stoma misbehaving). I had the usual chat with the nurse i.e blood pressure, heart rate etc. Then I went on to the more detailed discussion with another nurse to talk through my medical records etc and health, blood test taken and listening to my chest. She had the same name as my consultant/surgeon, didn't think much of that. She was really nice and calming.

Then Mr Simms came into the room to get me to sign the consent forms and discuss 'risks' and introduced me to his wife who had been looking after me for the past half an hour. Really nice, they are fantastic at Chesterfield and really put me at ease. I asked about the risks and he said they were standard and not related to the cancer so that settled my mind. He did say there was one precaution that as I had completed my radiotherapy recently the wounds tend not to heal as well and may be open to infection. Therefore he is to leave the surface of the wound open and pack it. I love the fact they don't just chop you and sew you up - there is real thought going in to the treatment...

I have had my fair share of set-backs but I absolutely know it is not due to the teams incompetence...if it happens it happens. I went up to the ward that I spent 7 weeks in as I needed to meet up with my stoma/colorectal nurses to review my stoma. I met a good few of the nurses that looked after me so well previously. The Stoma nurses had a look and redressed it using a different kind of barrier. I had changed the bag at 01:30 am, then the nurses changed it at 12.30, following two more leaks it was changed twice wonder the bloody thing is sore due to keep ripping the skin off. I must add to those out there who are yet to experience a stoma (Carole x), my case is an exception as they usually stitch the stoma about 1/2 to 1 inch above the skins surface, however a stitch came out post surgery and the half of the stoma slipped down just below the skin level, which is why it leaks and gets on my skin...I will have to call the stoma nurses again tomorrow as the new barrier did not work...need to get it sorted before the weekend as off to Whitby for the week!

So in short all systems go for the 21st June 2010 to have my reversal...thinking of you Carole on this one wishing it was you too...

Richard (My Boss) texted me today to check on me as not heard from me for a while, cheers and nice to know I am not forgotten.

Went out to Third-Space last night for a couple of hours...I get so much from the Celtic liturgy in the closing prayer, the community, love and fellowship that exudes to all is wonderful...they tease me as I do talk about myself an awful lot and we do actually talk and pray alot for me, me, me...I just love it!

Much love and gods blessings to you all.

T xx

Monday, 24 May 2010

Day 165 Mon 24/05/10

Hello Blog,

I am talking to blog as it is 01.30 and I am the only one up so no one else to talk to...

Been a strange has been one of the most peaceful and relaxing Sundays I can remember..Charlotte popped into town to see Olivia and Fran and I pottered around the house reading, watching TV and relaxing.

I have been getting into my new eating well as conventional treatment, prayer, EFT and gaining encouragement from friends and family I thought it about time I treated my body right - seeing as the cancer was probably caused by me and my lifestyle I thought I had better sort my self out!

Fran was aware of a doctor who also had an additional sideline in EFT and nutrition. Dr Kate and I had a consultation last week and I now am progressing with a diet sheet which consists of 3 times daily superfood drink which has algae etc among a large number of other good for you items, 3 times daily green vegetable drink made from blended raw spinach, greens, fresh root ginger, fresh lemon and apples. The good thing about the green drink is it is even better than juicing as you just blend the whole lot up...I must admit after a first try where I forgot to wash the spinach and didn't like the grit in the drink it is really pretty good. Also I am to start to drink a high power wheat grass shot which contains cancer beating nutrients.

Finally my diet has to change in order for me to maximise the benefits...a near vegetarian diet and do you know what today I had one of the best and most tasty Sunday dinners ever...Roasting tin with sweet potato, potato, onions, whole garlic cloves, parsnip, carrots all chunked and doused in extra virgin olive oil, fresh herbs, lemon quarters and then seasoned and slow roasted for two hours in the oven, the final 30 mins with the foil off and the temp turned up...bloody tasty and really healthy too!

I want to get my cells healthy and give my body a better than 40% chance of the cancer not returning, for myself and my family, also I really do want to get back to work asap, so to be in as good a position health-wise as I can is a good move - I have a month before surgery so need to flush out my system.

So like I said a strange weekend because whilst all this good positive stuff is happening and I feel loved and in control I had an awful feeling today that I am going to matter what I and others do this is what is going to happen...

Maybe it is just a heightened awareness of my mortality, I just don't know - whatever it is it is a horrible dark feeling that I just keep pushing to the back of my mind and haven't managed to shake yet?!?!

Maybe it is the breathing difficulties I am having on and off that again remind me how fragile we humans are..I think it is just crap on my lungs and/or throat as I keep coughing this horrible stuff up and cant quite get a full breath...I am sure it is nothing bad although I have had it for a couple of months and it is not as bad as it was!

Also fed-up at my stoma as it wont stop leaking due to the should be about 1/2 an inch raised above the hole in my side however true to form it went wrong and lost a is now just below the skin level so tends to easily get under the sticky tape join...I went to the pub on Sat night with Fran and Charlotte just to get out and sit in the garden but had to come home as stoma leaking...I said at the time that I should be fed-up and depressed however we as a family just got on with it...Even the laying on the bed for an hour and a half to change didn't bother me...maybe that is why I feel so strange as bottling up the emotions...It leaked again on Sunday afternoon so had to be changed and whilst I am typing I can see a leak which if unchecked can be messy... :-(

Good job that this blog is just to 'blog' as people may think I am going off my trolley!

Hope all are well and healthy.

Much Love


Thursday, 20 May 2010

Day 161 Thu 20/05/10

Good Morning,

Cant sleep as seem to be thinking as usual...even though I am feeling better and stronger than I have in months I still have a dark patch nagging at the back of my head that I keep pushing back there. I will deal with it soon as I did when I first found out and went into overdrive about preparing for the future.

Went for the last radiotherapy session, told that the side effects and the sunburn on my backside will get worse for the next couple of weeks before it gets better, oh everything else I will get through it.

Fran came with me today which was lovely...I love the way she links arms with me when I need it most...we went to the canteen on the 2nd floor at Weston Park and had lunch, bit like school dinners but nice and seemed fitting to have a celebration lunch out at the hospital. Took the reception ladies some roses and some for the ladies on the LA7 unit...I have a follow-up appointment to plan for 4-5 weeks time to check and then the reversal.

I also had my last consultation for a while with Dr Furniss on Tuesday...she is straight to the point and has a good sense of humour...when I mention a sore bum or sore when having a wee she says yep thats one of ours!

After the last treatment Fran and I went to a shop in Sheffield that I had seen several days a go that sells tiles...with showers for 5k we had a good look round and went to focus and spent £70 on floor tiles for the conservatory :-)

WE also went to an Audi garage to look at cars...there was an absolute beauty of a car an R6 Quattro I think it is called...60k, I'll have to stick with my Picasso for a while longer!

Back home and the bloody boiler has packed up again so the gas man is coming back at 08.00-10.00 with a replacement fan...

Life goes on but something tells me it will and never should be the same again.

Finally, I have been chatting on a cancer forum with Dizzie (Carole) who is starting on her journey...she is showing great courage and like me has her down days, however I see in the future her growing old...never the same but then again we all change and evolve...she is in my prayers.

Funny thing.. I nearly always spell cancer with a capital C and then reduce it down to lower case...unlike when I spell God it is spelt and quite deservedly with a capital G, cancer does not deserve a capital C...going crazy I know so off to sleep....

T xx

Wednesday, 19 May 2010

Day 160 - Wed 19/05/2010

More good news folks....

The ileostomy reversal booked for the 21st June...

As from yesterday I no longer have to wee or empty my stoma into a measuring jug as no more fluid balance charts for a while at least.

With a bit of luck my PICC line (remember the one that goes in my left arm and across my chest and into my right atrium) could be removed on Thursday of this week!

And maybe I have mentioned it before but my last Radiotherapy treatment is today Wednesday!

No speeches today just good news.

Much love

Tony x

Wednesday, 12 May 2010

Day 153 Tue 12/05/10

Hello blog....

Today is a good day and do you know what there arn't that many bad days lately...

Things appear to be looking up and I feel better and stronger than I have for quite some time. Of course there are still the every day things to contend with but I feel mentally stronger and fit enough to deal with them and move on...

Prayer is playing a big part alongside my daily EFT sessions so I should be feeling better right?

The radiotherapy has started to display its side effects such as stanley filling with water and my lower region getting sore. It is now uncomfortable to sit down for any length of time as my backside is a bit tender...funny it does feel like sunburn! I thought I had done away with the pain in the a+*& when I had the tumour removed. However this is only short term until the treatments have finished.

I have had it confirmed yesterday that I will have a further 3 treatments next week as it is going okay. This will give it a better chance of not returning seeing as I cant have the chemo!

Fran has just come back from a course for EFT and treating Cancer - she has returned armed with loads of diet instructions and a lovely health drink that smells, looks like and strangely tastes like fish food - apparently it will do me good apart from making my wee glow in the dark!

I will also update you all following my appointment with the surgical consultant on Thursday - we are to discuss the stoma reversal - It may have to wait on the radiotherapy side effects slowing down however should be in the next month...that will be great and whilst I am accepting of stanley and the routine I wont miss having to lie on my bed for two hours with my lower intestine open to the elements. I have to air the area around stanley as it is a bit sore also stanley doesn't know when to stop, so I cant put the necessary sticky stuff down so can take a while!

I am off to see Lyn (our minister) at her weekly surgery in a little while just for a chat and some prayer...I hear from Mike that she has quality street there too, I love the purple ones!

Much love to all, please dont worry about me as all okay....lets just get back to our normal lives as getting a bit tired of this now, time to move on!

Tony xx

Thursday, 6 May 2010

Day 147 Thu 06/05/10


Latest update....I had my 2nd opinion review yesterday. It was a nice surprise as I was waiting on a phone call for the appointment - I was lying very still waiting for the radiotherapy to start whirring away when the radiographer told me that Dr ***** was available that same afternoon and would be able to see me after my treatment.

Off I went and as expected I was informed that he concurred with my oncologist that it was indeed to risky to give me any further chemo. There unfortunately is no other treatment other than the radiotherapy that has a good chance of clearing up any localised dodgy cells...

He did say that they are more concerned about the localised cancer returning therefore the focus was always to be on the radiotherapy. What he did say is that usually if chemo and radiotherapy are given together there is no requirement to have such a high dose of radiotherapy. That said, as I am not having the chemo he is going to recommend several high doses of radiotherapy at the end of my planned treatment plan which is due to complete on Friday 14 May. There is the increased risk of a couple of side effects being more severe such as diarrhoea and soreness what with the insides being exposed - thankfully Fran and I are prepared for this with extra stoma bags, a fridge load of fluids ready for IV infusion and several hundred loperamide (which is the active ingredient in Immodium). We are prepared and will get on with it!

I am looking forward to Richard's visit from work next week with the HR team - it will be good to show them how strong I am getting as a prelude to getting back to work. I need to chase up the results of my proctogram (scan to check the original join) - this will dictate when the surgical team can plan in the stoma reversal!

Chris and Colin came round earlier and it was only a shame that we had to go out as woul;d have liked to spend a bit more time with them....I mentioned that it would be good to have a church healing evening soon where we could have some focused prayer on the sick and needy or those like myself that need to hope that I dont get sick - they are to make enquiries and get back to me - they really are great at arranging things.

I really do feel pretty strong at the moment and what with stanley behaving and not leaking, I feel better than I have for more than I can to be careful that I dont get carried away.

I am conscious that I want to acknowledge what I have learnt from my experiences over the past 6 months...the old saying what doesn't kill you makes you stronger just keeps rattling around in my head!

Gods blessings to all.

Tony xx