It is all good news!

Hi everyone,

I did start with a title, Good News and Bad News but decided that ultimately it is all good news however bad it may sound to some!

I am back from my palliative care clinic and now have the full picture. The best news ever is that the pain is being caused by an ulcer with a sloughy area (means that it is not healing like it should and is a bit mucky). To some this may not sound like good news but for me who until then had suspected cancer had returned to my bowel, it was brilliant news.

The only way to clear the ulcer is to remove this piece of my bowel which would mean me having a permanent colostomy. Not particularly great news but again better than the cancer having returned to my bowel.

My choice at this moment in time is to not go for the surgery due to the fact I would have to wait for at least 6 weeks before and potentially 6 weeks after chemo - this is due to the Avastin I am taking every 3 weeks as it doesn't allow for wounds to heal. So no chemo for 1 1/2 - 3 months is not an option for me at the moment. I have other things to consider that will give the ulcerated area a chance to heal. My palliative care registrar agreed that if the pain is under better control there is no real reason to chance not having chemo for 3 months.

Of course my cancer would love not having any chemo for a number of weeks - it would have a chance to grow, I am not about to let that happen.

Thanks for all the support

Much Love

Tony xx

Don't borrow trouble until trouble comes!

The above saying is one that I use quite a lot on the cancer research website - basically means why waste time worrying until you know all the facts!

Like I said a saying I use a lot to advise others but one that I am finding particularly difficult to heed my own advice...

I had a call this afternoon from my surgeons secretary...she noted that there was a chance of me having my colostomy reversed and I had to correct her that it had already been reversed...After a few moments and shuffling of paper, I was advised that I would gain the results of my bowel biopsy and the suggested plan of action at an appointment that I already have planned with my palliative care team at 16:00 tomorrow. I was further advised that Mr S wanted me to know that if I took the surgery option????? there was an appointment booked in my name for a surgery pre-assessment this Thursday.

If I take the surgery option (for whatever reason) this means a stop on chemo so I have some serious thinking to do when I know what I am up against. I understand that I will get the full facts tomorrow and I still have faith in my care teams however I do wish I hadn't had that phone call as my head is most certainly borrowing trouble!!

Much Love

T x

Goodbye dear friend.

A dear friend from the cancer research chat room lost her battle Thursday night. The word 'battle' is liberally used when we suffer from all kinds of illnesses and I can say with conviction that Rose fought her battle with cancer bravely.

Rose helped me and hundreds of others on cancer chat when she was struggling herself - goodbye dear friend.

Much Love

Tony xxxx

Ouch that hurt!

Just a quick update...

Still not sleeping much so spent much of last night watching a US series called The Wire...recommended by my mum...I am hooked, It is set in the inner city areas of Baltimore and shows life within a police unit and their opposites within the drug gangs. Not your usual shoot em up as it gets under the skin of both sides and kind of reminds me of a modern day Hill Street Blues.

Anyways I went for my Sigmoidoscopy this afternoon and as Mr S had done one previously in clinic I opted not to have the sedative but to have the Entonox (just in case).  Pretty stupid of me as last time I didn't have this incredible pain under investigation...

Mr S had to take a couple of biopsies and said that he knew the area he was focusing on was the right one due to my immediate reaction. I screamed whilst he snipped a couple of bits off to be sent away...they really don't need much!

He is going to rush the biopsies through and noted this was because I was in the middle of treatment...usually it would take 4-6 weeks however he hoped to have something back within a week. The red/sore patch could be the result of radiotherapy damage or a reoccurence....we will know more shortly..

T xx

Spoke too soon!

Like a fool I forgot the big constipation causing injections of anti-sickness, atropine x 2 and steroids, also the tablets given to combat the side effects would be too much for my current levels of laxatives....I should have included some powerful movicol to the mix... I was so pleased with they way this cycle was going that it went out of my mind.

What resulted next was me screaming in both low and high pitched screams with the most incredible pains.

Oramorph and 8 sachets of movicol and by this morning I am thankfully back to normal....The worst of it though was the thought of Fran and Charlotte listening and knowing there was absolutely nothing they could do.

As you all know I have major pain issues in my sigmoid colon and back passage which thankfully the recent MRI scan didn't show anything suspicious. My brilliant surgeon Mr S at Calow spoke with my palliative care team and has decided to take a look with a camera, called a sigmoidoscopy. That is booked in for next Thurs 16th. He has arranged sedation as he is aware as to why I am there and doesn't want to cause undue pain with cameras poking about. Mr S is doing the procedure himself and then we will talk straight away as to what the issues are. 

When I read on the cancer forums as to the levels of care some get, mine is a golden example of the NHS and how they all communicate...I have my Oncologist and Macmillan nurse at Weston Park, I have a community Macmillan nurse based at the local Ashgate hospital, The palliative care team at Calow, my surgeon also based at Calow and not forgetting Limegrove surgery with their brilliant doctors and the district nurse team that call me by phone once a week...I couldn't ask for more.

You will all be pleased to know all is well again - I have learnt another little tip for all out there going through the same or similar, when you have your chemo and supporting medication, please discuss increasing your laxitive regime for a few days with your care team.

Much Love

Tony

Praise the lord and all my good friends!

I went for my chemo after Prayer, EFT (eft-changeyourlife.co.uk), Lorazepam, good conversations with friends and family alongside support from my facebook and cancerchat buddies and a good lunch (I recommend Fried egg sandwiches pre chemo). They all helped enormously as I am absolutely fine....all of this helped me change my mindset from chemo is harmful to chemo is good for me...

I spoke with my mum, Wendy's texts and Barbara despite only having bowel surgery a week ago came for a visit with Graydon. My Aunties Chris and Colins emails always help... My HR manager also called to review status which was good.

I had a bed booked on the ward as I still have problems sitting and they also booked the bed for overnight as a precaution. It turned out the bed available was a side room just for little me....quiet and peaceful..Due to the sedative I slept for most of the 8 hrs and managed to eat dinner at 6....sausage, mash, peas and onion gravy...it was such a contrast from last time.

And this morning I woke feeling slightly strange but able to go downstairs for breakfast and a cuppa in the lovely warm conservatory with Fran.

There are many of you out there needing prayer and there is enough to go around...if you are going through a particularly rough time, whatever your beliefs let me know and I will add you to my prayer book....I may not remember or be able to pray for you every day but you should take comfort that you are in my little red book.

All Good

T xxxx

Always look on the bright side of life!

Firstly I would like to welcome my dear friend Barbara home after surgery, prayers continue for positive and favourable results. 

As for my latest, I have now developed a perforated septum which is a medical term for a hole in my nose between my nostrils. It is a side affect of Avastin i.e. constant nose bleeds and an itchy nose. The bright side is that some people pay good money for such a hole:

I have also met with my palliative care team at Calow who were really helpful...they will be looking at my pain relief in more detail and adjusting in small increments in order to improve things.


Finally I sat and ate at the dinner table for the first time in 2 months and rode my motorbike to the chemist yesterday.


Wish me luck for the chemo next week, I have Lorazepam to sedate me and a hospital bed for comfort...what on earth could go wrong!


T x