It's almost a month since my new cancer journey started. I have been thinking a lot about that timeline today and I need to put it down to demonstrate just how amazing the NHS is.
October 15th 2013 - Secondary Bowel Cancer (Peritoneal disease & Liver Mets) diagnosed
October 16th 2013 - St Luke's called to arrange my first three appointments
October 17th 2013 - 4 units of Blood Transfused in Comet Ward at Crawley Hospital
October 21st 2013 - Initial nurse led chemotherapy information appointment at St Luke's
October 23rd 2013 -PICC line in (St Luke's)
October 24th 2013 - first chemo & last breastfeed (St Luke's)
October 26th 2013 - 5FU Pump disconnected (Cardiff!!)
October 30th 2013 - first PICC line flush and redress (Crawley)
November 4th 2013 - Family flu jabs (GP)
November 5th 2013 - Pre Chemo bloods (GP)
November 6th 2013 - Chemo round 2 (St Luke's)
November 7th - November 10th 2013 - Emergency Admission with acute pain (East Surrey), including 2nd 5FU pump disconnection, and 2 unit blood transfusion.
November 11th 2013 - Imogen gets UTI (GP)
November 13th 2013 - Counselling for the children at St Catherine's Hospice, Crawley & PICC line flush & redress (Crawley).
Still to come before my next chemo appointment
November 14th 2013 - Isaac's first play date ;)
November 15th 2013 - Tony comes back from Liverpool!!
November 18th 2013 - washing machine to be repaired!!
November 19th 2013 - pre chemo bloods (GP)
November 20th 2013 - chemo number 3 THE HALF WAY POINT.
We would not have got this far without everyone who has offered their services to us. Whether it has been doing a load of washing, hosting a Halloween party and feeding the children, cooking meals for our freezer, coming round to make me do something creative, providing all the generous and unexpected items for our boxes and bags of love, picking up the children, dropping off the children and just being there and helping me feel like a normal member of society.
You know what you have done, if we have not taken you up on your offer, do not be offended. Unfortunately cancer is not a sprint, it's not even a normal marathon, I am facing marathon upon marathon upon marathon. Several things have happened this week to remind me that this is not a project with a definite end date. This is an unknown quantity that is going to be hanging around for years and years.
We are so grateful for all the support and help we cannot say thank you enough, but if I don't get back to you straight away or I ignore you for a couple of days, it's nothing personal, sometimes I just need space to process things alone. Keep pestering me and I will respond it just might take me a while. This has hit like a tonne of bricks, and I have not really had the time to just sit so please indulge me if & when I do.
But incase you didn't get it yet.....THANK YOU FROM ALL OF US
About this Blog
This blog started as an online diary and place for me to rant about annoyances in my family.
However since July it has become a place for me to catalogue and express my views and opinions on the treatment I have recieved following the diagnosis of a potentially cancerous tumor in my bowel.
On 3rd August 2011 I was told that it was cancerous. In April 2012 I was given the all clear.
October 15th 2013 I was diagnosed with peritoneal disease and liver metastases. The cancer was back and this time it is inoperable.
It is a little bit out of date as the NHS doesn't tend to have a WiFi connection in hospital and I can only post when I get home and posts take a while to write.
It is NOT about individuals or the nursing profession. It is about some of the inadequacies in the system and the way the NHS is failing some people.
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Showing posts with label Crawley Hospital. Show all posts
Showing posts with label Crawley Hospital. Show all posts
Wednesday, 13 November 2013
Tuesday, 3 April 2012
Follow Ups
So today is 'F' day and to cap it off I hardly slept at all last night.
I know I should be being positive but yesterday I got my latest Beating Bowel Cancer update and reading it just set my mind racing.
The worst thing about this is the loss of control. I cannot control whether or not the cancer chooses to come back. I can alter my diet, change my fitness habits and follow all the government health advice (some of it very contradictory) but nothing will change the fact that I ultimately have no control over what is going on.
So today, like every other day, I have to suck it up, put a positive spin on things because I think if people knew what was really going on in my head and heart and the amount of time I spend in tears or near tears about the uncontrollable they would be horrified
I know I should be being positive but yesterday I got my latest Beating Bowel Cancer update and reading it just set my mind racing.
The worst thing about this is the loss of control. I cannot control whether or not the cancer chooses to come back. I can alter my diet, change my fitness habits and follow all the government health advice (some of it very contradictory) but nothing will change the fact that I ultimately have no control over what is going on.
So today, like every other day, I have to suck it up, put a positive spin on things because I think if people knew what was really going on in my head and heart and the amount of time I spend in tears or near tears about the uncontrollable they would be horrified
Monday, 2 April 2012
Resoutions
Now most people have made their resolutions and broken them by the 2nd of January. However I promised myself at the start of the year that I wouldn't make or indeed break any resolutions until I was free of chemotherapy.
I suppose technically that was 14th March, the day I took my last handful of tablets, but I haven't felt like I am free of anything just yet
You see that's the thing about Cancer. It is now a permanent part of my life. I will forever be concerned that it will come back. I know plenty or people go on to live a long and healthy life and never have to deal with it again. I also know people who knock one type of cancer on the head and then have to deal with another and another and another.
I cannot say into which camp I will fall as I am still in the processing mode I have had part one of my follow up which was yet another CT scan, and on Tuesday I see my oncologist to confirm I am all clear.
Honestly I cannot see past that date at the moment. It will be at Crawley Hospital which is the same place I was when I was told that it was cancer, where I had to go to have my PICC line flushed & where there is a lot of negativity for me. Its not as bad as East Surrey which will forever be associated with the surgery and readmissions, or Royal Surrey where I had all the 'poxy oxi'
So until Tuesday life is still on hold, although there are crafty goings on, including purple prickles for a Gruffalo Costume...photos to follow
I suppose technically that was 14th March, the day I took my last handful of tablets, but I haven't felt like I am free of anything just yet
You see that's the thing about Cancer. It is now a permanent part of my life. I will forever be concerned that it will come back. I know plenty or people go on to live a long and healthy life and never have to deal with it again. I also know people who knock one type of cancer on the head and then have to deal with another and another and another.
I cannot say into which camp I will fall as I am still in the processing mode I have had part one of my follow up which was yet another CT scan, and on Tuesday I see my oncologist to confirm I am all clear.
Honestly I cannot see past that date at the moment. It will be at Crawley Hospital which is the same place I was when I was told that it was cancer, where I had to go to have my PICC line flushed & where there is a lot of negativity for me. Its not as bad as East Surrey which will forever be associated with the surgery and readmissions, or Royal Surrey where I had all the 'poxy oxi'
So until Tuesday life is still on hold, although there are crafty goings on, including purple prickles for a Gruffalo Costume...photos to follow
Saturday, 15 October 2011
After the flushing
Wow, what a difference a week makes.
This time last week I was suffering the side effects of the chemo, confused about the mis commuication between NHS professionals & generally feeling a bit down.
I picked up my prescription on Wednesday and cannot commend enough the staff in Boots in Maidenbower. The lady I dealt with there was amazing and really showed excellent customer service which makes a massive difference when you are going through what I am going through.
So to Thursday & 'the flushing', @craftyguider commented that it sounded like something the bullies would do at school. Having been through it I can definitely say it is not something that you would want to have done on a regular basis but I have definitely had worse medical procedures over the last 3 months!!!!
I was a bit worried because I had to take the kids to the appointment. I needn't have been. Liz, the IV nurse, was brilliant.
She had to start off by taking my blood pressure, O2 SAT's & temperature and offered to let Isaac or Imogen put the O2 'thing' (technical term there :)) on my finger. They didn't want to, but it helps make the procedures less scary and medical.
The actual flushing & change of dressing is a bit of a time consuming process. Everything has to be cleaned and sterilised multiple times. In order to flush the line through a little bit of blood has to be drawn into the line. Liz checked that this wasn't going to phase the kids and they were fine. They both had a look at where 'mummys wiggley' (its new name) goes into mummys arm and Isaac proudly declared 'Mummys special medicine goes in there so she doesn't have to go to hospital again'.
The dressing was then replaced and appointments set for the next few weeks, including the district nurse coming out on 25th October to take Blood for the next chemo from my PICC line rather than having to have a needling. Then in future weeks Liz will come and do it rather than me going to have to go and sit in the hospital for ages.
Things are finally starting to come together. The pain in my neck and shoulder is lessening & Liz also reassured me that this is normal and I should only start to worry if when the line is flushed I hear a rushing in my ears.
So I have 3 1/2 more days of tablets to take and then a 'rest' week
This time last week I was suffering the side effects of the chemo, confused about the mis commuication between NHS professionals & generally feeling a bit down.
I picked up my prescription on Wednesday and cannot commend enough the staff in Boots in Maidenbower. The lady I dealt with there was amazing and really showed excellent customer service which makes a massive difference when you are going through what I am going through.
So to Thursday & 'the flushing', @craftyguider commented that it sounded like something the bullies would do at school. Having been through it I can definitely say it is not something that you would want to have done on a regular basis but I have definitely had worse medical procedures over the last 3 months!!!!
I was a bit worried because I had to take the kids to the appointment. I needn't have been. Liz, the IV nurse, was brilliant.
She had to start off by taking my blood pressure, O2 SAT's & temperature and offered to let Isaac or Imogen put the O2 'thing' (technical term there :)) on my finger. They didn't want to, but it helps make the procedures less scary and medical.
The actual flushing & change of dressing is a bit of a time consuming process. Everything has to be cleaned and sterilised multiple times. In order to flush the line through a little bit of blood has to be drawn into the line. Liz checked that this wasn't going to phase the kids and they were fine. They both had a look at where 'mummys wiggley' (its new name) goes into mummys arm and Isaac proudly declared 'Mummys special medicine goes in there so she doesn't have to go to hospital again'.
The dressing was then replaced and appointments set for the next few weeks, including the district nurse coming out on 25th October to take Blood for the next chemo from my PICC line rather than having to have a needling. Then in future weeks Liz will come and do it rather than me going to have to go and sit in the hospital for ages.
Things are finally starting to come together. The pain in my neck and shoulder is lessening & Liz also reassured me that this is normal and I should only start to worry if when the line is flushed I hear a rushing in my ears.
So I have 3 1/2 more days of tablets to take and then a 'rest' week
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