North South divide!

Hello,

I was in a different part of the chemo lounge yesterday which was a shame as the 'northern chap' and his wife (having the chemo) were up the other end where I have been before...the rough end we called it...I went down there to go to the bathroom and have a chat wheeling my trolley with me...I did check my wallet and told them all that I had a tenner missing and was only walking through, that got a good laugh...I asked what the topic of conversation was and it turned out to be my favourite subject...what they were having for tea...one chap was looking forward to a pork chop, another fish & chips and a young girl hadn't made her mind up...me I wasn't sure what I would feel like so probably scrambled egg and brown toast which I did end up having in the end.

Back home after Irinotecan (5) and Avastin (2) and frankly feel a bit delicate...Due to the issues with the chest pains last time they have reduced the Avastin to 50% dosage of what I had last time - I will ask the question whether that will be 50% less effective but Fran and I are hoping that the prayers and visualisation means that I don't need the full dose anyway...I am trying to look at the half full rather than the half empty approach!

Thankfully I didn't need to stay in last night, Helen the Macmillan nurse told me at my Thursday appointment to pack a bag and that would sort of reverse tempt fate and it wouldn't be needed.

The day was a long one as was in WPH from 10am until after 4pm and as it took 4 painful goes to get a cannula in, time dragged a bit. I felt fine after the Avastin as they gave that to me first over 90 minutes, it made sense as they could continue to monitor my blood pressure every 20-30 minutes for longer.

The Atropine injection hurt a bit, the nurses call it a bee sting but we, the patients, have renamed it the hot poker as it stings like hell after the stuff goes into your arm.

I feel okay apart from the nausea which is strange as I feel sick just thinking, looking at or drinking water so the small fresh juice ice-cubes that Lisa advised on will now finally come in handy!

I did wear my stripey and colourful socks that my pa and ma brought me but unfortunately didn't get a picture as I was in the special area with a 'high dependency' chair..it has an automatic recliner and foot rest so you rest and nap better...I so wanted to take a picture of my socks, my chair and especially the fact that at one point I had 5 sharps bins in my vicinity as Carole and I are having a bit of a banter as she has had two sharps bins at home and I have had zero so bit of jealousy going on there...I just can't let it go! :-)

Scan is going to after my final (for this group of 6) one in 3 weeks time so fingers crossed. If everything goes well I will have a rest and continue on.

Hope all are well and hope to see most of you in a week or so. Miranda is locked away safely in the shed so I am not tempted...for the best!

Much Love

Tony xx

Amazing friends at RRD

Dear Blog,

I have to tell everyone about the amazing friends I have at RR Donnelley. I will not share the gift with you all, however it was extremely generous and will provide a buffer for a rainy day that may or may not come in the future.

I hear so many times of people with cancer, having family, friends and work collegues back away when they need them most. They have their reasons, albeit sometimes amazingly selfish ones why they back away and cant handle cancer...however I can't think of anyone that has done so in my case...I am so lucky!

RRD as a company have been amazing and I have no doubt that my resolve would not be as strong without their support...

I had a review with Richard (boss man) and Alastair (hr man) and however many times I meet with them I always go in dreading it as it may be that milestone that you don't want to reach when the decision has been made to let you go...I was told that the recommendation is to keep me working as best as I can for a further 3 months at which time we will review again. It is a climate of reassurance and what they can do for me...they are a huge multi-national company and so often the bigger companies can get lost as far as employees go, it is refreshing for RRD to actually practice what they preach.

Yay Team!

Tony x

Day 406 - What was I doing at this time last year?

Just looking at the date earlier and talking about Burns night and had a flicker of a memory!

This time last year I was preparing for surgery to have my tumour removed. I went out to the pub with the Third-Space crowd for a Burns night celebration and watched them eat the Haggis and drink the Whisky whilst I sipped my fizzy water.

I remember feeling terrified and reading my blog over again just now I saw the level of people surrounding me that day and for the few days before.

http://tonysonghurst.blogspot.com/2010/01/day-41-wed-200110.html

Not great memories of what was to come but great memories of family, friends and amazing fellowship. I wrote poetry earlier in the day which summed up my feelings and the fears I had...

I am scared now and cant seem to shake it

Be scared and fearful 
Be loving and caring
Sitting in my room 
I feel alone with God
He tells me it is okay to be scared
He tells me that it is okay for me to cry
So I am and I do


A discovery about myself - I met with an astrologer yesterday and during our chat I determined that my fear experienced all those months ago was no more. 


I am not scared and am comfortable with that...I wasn't before as thought that I should be full of woe and felt it a bit weird but a recent visit to the Ashgate and some prayer (actually quite alot of prayer) at Third-Space, at Tansley Methodist during a healing service, at the bandstand, at the rare occasion I seem to get to Matlock Moor and at home, I am devoid of fear as I am aware there is a plan and a path I am to follow.


One other thing... I am aware that my 'traditional' care team are doing all they can and have the greatest respect for their knowledge but also aware that there are other ways out there. I am not accepting the inoperable tag and the eventual terminal nature of my illness. Just because the medical profession believe 'they' cant heal what I have it doesn't mean it can't be healed...


God Bless all and a safe journey to all the Third-Space crew off to Blubberhouses for a weekend away of spiritual enlightenment...Fran, Charlotte and I were supposed to be away too but not really up to it...my internal workings seem to be all over the place, my chest and breathing is mildly erratic and don't want to risk being too far away from home...they will all be missed and in our thoughts and prayers.


T xx

Yes Stanley, you weren't so bad...

I put on my Blog a couple of nights ago....bring back Stanley all is forgiven....and last night I still mean it....

My backside is so sore with the chemo side effects that I have resorted to putting strips of toilet paper over the radiator to warm them up....acid burns would hurt less and cant sleep...

A positive note is that I have finally started to catch up on stuff... 

Avastin has added to the Irinotecan side effects and for anyone reading this that is going through similiar, it doesn't mean that you will also get them as we are all different, I am only adding them as need the sympathy and the hugs that my good, no, great friends on here will give me....

However anyone reading this that is going through similar, make sure you complete a side effects diary...I just have a little book diary that I keep all my appointments etc in and when I have a symptom in it goes....it can then be easily recalled when I meet with my onco!

• Tiredness
• Constipation
• Diarrhoea
• Rectal bleeding (bright red so could be from the 2 above although will get this checked)
• Headaches
• Nosebleeds
• Nausea
• Mild Hair Loss
• Stomach Cramps
• Shortness of breath
• Chest Pains (have a Nitro Spray just in case - I bet Carole/Dizzie has not got one although she still beats me with the 2 sharps bins)
• Mouth Ulcers and peeling
• Excessive salivation
• Sore skin and hands
• Insomnia due to the early stage doses of steroids
• Weight gain from constant hunger....

So not much really and most are bearable...

I must admit I did feel like a pint of Stella tonight although abstained as want to try and keep my blood nice and clean!

Much Love

Tony xxxx

Bring back Stanley all is forgiven...

I never, ever thought I'd hear the day when I would want to see Stanley back but...

T

Chemo visit 4 (Part 2)

Sorry...in my haste to get the details down I forgot to mention my CEA (Carcino Embryonic Antigen) levels have dropped.

When you are in your mothers womb the levels are high and as soon as you are born the levels drop to what the profession calls normal which is 0 - 2.5.

In between my operation to remove the bowel cancer and the secondary cancer being discovered, the blood test result showed the level to be with 'normal' levels at 1.1.

When I was diagnosed with secondary inoperable cancer the level had jumped to 5+ and now the level is standing at 3+ so dropped by 2 whole points.

The consultant didn't seem to think the change in level was significant and said that there are loads of other factors to be taken into consideration, he did say in some patients the level can be in hundreds if not thousands and they are okay.

However I am taking everything I can get as a positive and significant and so should all you supporters out there.

As I have said, if the Avastin can kick start my immune system then I can also do this in other ways.

Continue the prayer, the reiki, the good wishes and positive thoughts as this will NOT finish me.

Much Love

Tony xxx

Chemo visit 4

Hello all,

Shortly after this photo I was whisked efficiently off to a side room given an ECG and kept in overnight - every cloud has a silver lining as they do a great porridge and fry-up at Weston Park for breakfast!

After Fran and I arrived almost an hour late due to snow it was decided to give me the Avastin first over 90 minutes then with a 30 minutes flush through then the Irinotecan for 90 minutes. I had my second Atropine injection due to stomach pains which then appeared to develop into a tight clamp on my chest. Due to previous problems with chemo brought on angina I was given a couple of squirts of Nitroglycerin under my tongue and now have to carry it with me....I am hoping the problems experienced don't prevent me having the Avastin...

I was very impressed with the care and attention I was given, it is given at a time when you absolutely need to feel special, loved and cared for by a profession that so often gets a bad press for their uncaring attitude.

I had an ECG and blood test prior to going up to the ward - they faxed Calow to get my last ECG which was taken prior to me being discharged...this was used to compare my normal Calow ECG with my latest one which proved to be clear - 'good news'. I was also given an ECG and blood test prior to being released from Weston Park this afternoon. They are very through which is very very welcome.

The scarf was a Christmas present from my ma and pa, I had matching socks but forgot to put them on...they will be on next time.

I also met a great 72 year old chap who rides a Vmax motorbike so spent most of my stay talking bikes - to get how impressed I was that he rides a Vmax here is a picture:

My stay also showed me the end of the cancer journey - not nice but then what part of the journey is nice...I saw the on-call doctor that spoke with me earlier given some much needed care, attention and compassion to a fellow patient who was then moved to a private room with his family.

I did the only thing I can do and prayed for Mick the biker and the unknown warrior opposite who was moved to a private room.

Much Love to all

Tony xxx