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Thursday, 25 March 2010

Day 105 - 25/03/2010

Hello all,

Today was the day to face up to what is coming just around the corner. Fran and I had a trip to Sheffield for my initial radiotherapy orientation appointment. I met the team, had a CT scan, got tattoed (just little dots) in order for the radiographer to line up the machine to exactly the same point each time. Had a blood test to prep for my chemotherapy and recieved the long list of dates and times for the future treatments. I have one further appointment to sign all the details and review my chemotherapy plan on Tues 30 March then I have 25 RT sessions starting on 07 April.

I must say I didn't like Weston Park as it all seemed very closed in with low ceilings and narrow corridors. The people were really nice though and made me at ease as much as they could!

I think the worst part of it was that everyone attending had cancer of some sort and there was an air of doom and gloom - the staff do their best to keep the atmosphere up - it must be quite tough though. I am open to the notion that it was not the hospital but the way I was feeling being it was my first visit, we will see on that one.

I went to Chesterfield Royal yesterday to have a review of medication and fluids etc. As we unfortunately couldn't get the blood out of the PICC line yeaterday it was decided that I would have Dr Mel taken my blood every 2 weeks at Chesterfield when I am meeting to review my treatment. Blood tests came back okay so no worrys there. As the stoma output is levelling off I am okay to reduce the IV fluids by 500ml and increase my oral. The bonus was that I can now vary my oral fluids and had my first cup of tea in 6 weeks...it was heaven!

Finally Fran and I are now fully self sufficient as we can now connect and disconnect - Also the final hurdle Fran was signed off on changing my dressing. It sounds easy but to keep the PICC line steady, unclip it and place the new locking mechanism and placing a clear dressing over the top is not as easy as it sounds. Fran did a great job!

Colm visited on Saturday, great to see him 'so it was, to be sure' - we cant wait for the time when we can do what we want and pop out for a guinness or two like old times!

I hope all are well, please dont be strangers and let me know how you are doing.

Cheers

T xx

Thursday, 18 March 2010

Day 98 - 18/03/2010

Hello all,

A great day so far...Happy 40th to my little brother Andrew...it only seems like yesterday we were playing war in the back garden!

The nurse has just left after supervising my fluids disconnection. Fran and I are making a great team together...I am reading the protocol/instructions (being in control) and Fran is following those instructions to the letter. Apparently it wont be long before we are self sufficient as I have successfully connected and disconnected solo.

I must say it is better with Fran doing it as it lessens the risk although good to know I can sort it if need be.

We went out round to the Third-Space gathering last night...i ate far too much cheese and bread...boy was it good. One key point was to wave farewell to Stevie Kenyon who is going on a bit of a school trip to Nepal for 2 weeks. We all wish him bon voyage and a safe return. Harry thought my rucksack (pump and fluids bag) was cool and thankfully our Barbara didn't faint (I will leave that joke there now as I think we have worn that out :-) )

Time is ticking until next week when Fran and I will head off to Weston Park - Sheffield for my initial scan as a precursor to the radiotherapy. My mind is pretty blank and again as with earlier treatments I cannot work out what I am feeling....I suppose that will come later although I hope that it doesn't hit me too hard.

Looking forward to my good friend Colm visiting soon so we can catch-up and he can let me know how our good friend Yvonne's funeral went yesterday. I couldn't get to it so Colm gave my best wishes.

Dr P is being an absolute star(he'll say he is just doing his job) - Due to the number of needles in my veins over the past few months the drawing of blood is pretty non existent - I need weekly blood tests to check iron levels etc and the last test couldn't get enough blood out so looks like the easiest solution would be to draw from my PICC line. Dr P is going to find out about the possibilities of him doing that otherwise it will be weekly trips to Chesterfield.

Once again thanks to my family who are being a tower of strength - the Feltham Songhurst's are poised to drive up if I need them which is a great comfort. The support from my friends is also fantastic, the messages are flooding in. I did think about whether my publisising my illness would be too much and whether I should just keep it close, however I feel rather selfishly that I want the combined energy of support flowing my way....Me Me Me!

Until the next time!

T xx

Sunday, 14 March 2010

Cont...

I almost forgot to mention my cravings! I really really would like a bottle of orange Fanta (fizzy orange), a pint of cold Guinness or a nice cup of tea....Life is so harsh that all I have been able to drink for the past 2 months is St.Marks solution...

Seriously though if this is all I have to do then so be it....

St.Marks - Short Bowel Syndrome

Day 94 - 14/03/2010

Happy Mothers Day to my Mum and My Frances and indeed all the Mothers out there!

Well, back at last from hospital after 7 looooong weeks. There were some good times in amongst the illnesses (not just mine but other patients as well). There were some very sad times (RIP Terry Hearnshaw).

Operation out the way, cant reverse prematurely so the issues with my overactive bowel can't be addressed via other than natural means for 3-6 months. This means that I have to have fluids connected to me overnight. The amazing NHS have provided a homecare package in order that I dont have to stay in hospital for 3-6 months. A nurse comes to connect up at night and disconnects me in the morning. They will continue until Fran is confident in the sterile protocols as the PIC line has a direct route to my heart!

I must say Fran did the connection last night and the disconnection this morning brilliantly under supervision and I have every confidence she will get it sorted and we will be self sufficient very shortly. The only problem is when she is at work - we have discovered that I cannot carry it out one handed as it is just too difficult and dangerous! Therefore the Bupa Homecare team are to look at this and come up with a plan.

I have had my Radiotherapy scan appointment for Thu 26Mar at 10.30 afterwhich the Radiotherapy and Chemo should start shortly afterwards...I will let you all know how that goes.

It all sounds rosey however after we had the first connection on Thursday evening I sat on the sofa with my rucksack full of the 2litres of fluid on a small drip stand and a moment of realisation set it...this was accompanied by panic and fear...for the first time I really had a good cry for about 10 mins then moved on. As always Fran was there to hug and reassure me.

Fran has also worked out a theory/plan of eating and drug taking (prescribed :-) )... It worked really well and consists of regular meals and no eating past 6pm. This allows for my overactive digestive system to work through and I get to empty my stoma at midnight and sleep the night through. I am at the moment sleeping really well however still set my clock for every two hours so I can check my stoma is okay....we dont what it to burst in the night...Again!

Finally I have a new addition...A simple tubigrip bandage which is keeping everything together and the PICC line not flapping about in the wind, catching on my jumper etc...eureka!

All the very best to all my lovely friends and RIP to Yvonne Minter a long time dear friend who sadly passed away after suffering with Cancer, last week. I am sad that I wont make the funeral in Thatcham on Tuesday< I am sure she will understand!

Still praying and wrestling...onwards!

T xx