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It is a little bit out of date as the NHS doesn't tend to have a WiFi connection in hospital and I can only post when I get home and posts take a while to write.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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Friday, 24 January 2014
To be more accurate, actually I am not in Redhill anymore. I'm on (I think) the first floor (C) of Royal Surrey Hospital in Guildford.
Earlier today things took a turn for the worse. Not physically for me but in the interpretation of all the results of all the tests I have been having recently.
Things appear to have been getting aggressive in my stomach and treating me was beyond the scope of the consultants and teams in East Surrey.
The consultant rang and spoke to Dr Cummins (my oncologist) and he agreed that I needed to be treated, we were not and are not going to let this beat us this early on in the year.
So, it was decided that the best place for me to be was Royal Surrey. They have the consultants, the experience, the oncology department and can treat me far more effectively here. The plan was for me to stay in East Surrey over the weeknd and move to Royal Surrey when a bed became available probably Monday.
This all took place just before lunch this morning. Which incidentally I didn't get to eat as I am back on free fluids/clear fluids. Which basically means soups with no lumps, jelly, ice cream, mouse etc etc.
I spoke to Tony and he would come to the hospital as soon as he finished work.
At about 3:15 the registrar came to take some blood from my PICC line and then the nurse came in with the news that there was a bed at Royal Surrey now.
So, that was that. Luckily Tony arrived before I got whisked off and I got to update him on all the information I had been given in the last few hours. We quickly called my mum on the bedside phone to give her a quick update, skyped Isaac who had spent the day with grandma as he was sick this morning and had a cough (?) and then the ambulance crew arrived and I was being wheeled through the hospital and loaded up.
It turns out that out of all the ambulance crews available I get two gents. One of whom went to school with my husband and one of whom is a scout leader in Crawley, I mean what are the chances of that happening?
We left East Surrey at 16:23, we arrived at Royal Surrey about 30 minutes later. I have officially now been bluelighted through Reigate and around the M25.
At present I am waiting for pain relief because they can't use my drugs chart from East Surrey, but am clear that solving this problem is going to involve some fairly hefty medical procedures, maybe as an emergency if something happens over the weekend, but more than likely next week as long as I can get through the weekend with no WIFI now ;(
Wednesday, 22 January 2014
Living with cancer is much more than just going to weekly, fortnightly or other frequency chemo appointments.
There is all the side effects and problems that tumours, especially ones that cannot be operated on cause.
Consider this, since December 23rd I have been admitted to hospital 4 times (3 of those via ambulance).
The latest admission rounded of a lovely evening of drinking tea and teaching some of the people who made my very special quilt how to knit.
Here's how it happened.
I ate a biscuit (never again), got up to go to the loo, and face planted into Emma's under stairs shoe rack, unconscious. I imagine panic ensued. You don't expect your friend, even if she is suffering cancer to faint when she has seemed fine all night. I also have several small cuts to my chin and lip to show for the ordeal.
An ambulance was called, but Emma lives on a new estate so someone had to chase the ambulance up the road, while the lovely Jennie had been woken and came to provide some medical reassurance.
Luckily for Emma I managed to contain the nausea I was feeling for the ambulance and I'm glad I did. 2 and a half bowls of blood later and I was worried. Blood remains in your body, vomiting blood is never a good sign.
I was then hooked up to enough painkillers to fell a small elephant (entenox and my favourite liquid paracetamol) and took another trip to A&E.
A&E was pretty uneventful, until the vomiting started again, Tony arrived and was greeted with the sight of his wife being rushed into resuscitation while vomiting blood.
They gave me some anti sickness drugs, one of which gave me an awful rash up my arm and so now needs to be added to the list of allergens (along with penicillin & liquid tramadol). They also took a chest X-ray and then Tony was allowed to see me. I can only imagine what had been through his head and I apologise with all my heart to you my love. I do not ever mean to scare you and I am sorry about that.
I was moved to the Acute Medical Unit where I am now and 48 hours later have not vomited anymore blood, but am still suffering from Melena (Google it if you wish).
I have had a CT scan and another endoscopy (camera down the throat), but came round from the endoscopy to the most beautiful thing in the world, back on the ward with my husband and children just arriving.
This uncertainty about whether I will collapse, when I will collapse and what happens dogs every step of my life & panics me everyday, thanks to those closest to me, my amazing friends who so far this week have looked after my children so Tony can go to work and continue to earn, rather than taking the time off either unpaid or cutting into our precious holiday time together as a family.
Finally, after reading this please do one of two things
Visit www.blood.co.uk and register to give blood
Or my very good friend Emma Patterson is completing dryathlon for cancer research uk, please sponsor her and make my dreams of an artificial stomach come even closer.
Dinosaurs suffered with cancer and a cure will not be found in my lifetime, but other research can help patients suffering from cancer, and giving up alcohol is a massive sacrifice to raise money.
Tuesday, 14 January 2014
Today I saw my consultant, not one of his minions or underlings, but my oncologist. It is so refreshing to see him, he understands the disease and me and treats me like a person with opinions & knowledge rather than an inconvenience in their day, who asks awkward questions.
We talked about my admission's to hospital over the festive period, specifically about the unknown bleeding and where it was coming from and what may have caused it. It seems to have been the tumour causing the bleeding and my 'wonder drug' Avastin is what appears to have caused it. You might remember that Avastin attaches to specific proteins on the surface of the tumour. It also targets and weakens the blood vessels to reduce the blood supply to the tumour. In some people, ie me, it can cause unexplained bleeding. This means that I cannot have anymore Avastin, as we definitely don't want anymore bleeding and fainting.
We then talked about my tumour. It appears that the scans I had done in Somerset when I was admitted have not made it to Sussex yet. They are in the ether. This means that we do not know the status of my tumour and whether it has shrunk or not. So he and his specialist nurses are on the case and I have to go back in 2 weeks to see what the way forward is.
So not the NHS's finest hours. Scans I had done over 2 weeks ago which can be transmitted electronically have not managed to make it here.
This brings me onto one other thing. Why do I have an NHS number , but when admitted to hospital a hospital number. Why not just use one number to treat your patient. Is it of any benefit to me to have a different hospital number for every hospital I am treated in? This means for chemo alone I have 2 hospital numbers because I have outpatients treatment in Crawley and chemo in Guildford I have a number for each hospital. Why not just use my NHS number.
If anyone can answer his please let me know.
Sunday, 12 January 2014
When you have cancer eating becomes very important to you. You eat what you want when you want. Because I have lost so much weight this is even more true for me.
This afternoon I have been in tears because I wanted emmental cheese to go with some crackers. Tony couldn't find what I asked him for, so he bought me Brie. Which normally I love melted onto a bagel or toast. But I wanted emmental.
I cannot get over how pathetic I'm being about cheese.
There is no point crying over missing cheese.