I’d been really good all day, just resting in my chemo gazebo, using the new pain relief every 3 hours plus the gel and it seemed to be going well. Oh plus the hot water bottles that my lovely Linda brought me back in February to ease the pain of what we thought was wind.
By about 7 pm the real deep aching pain of cancer kicked in and wasn’t going away. Pain comes in many forms and my pain isn’t sharp acute pain, it doesn’t come and go it’s a constant ache, a deep ache inside the body as the tumours press on nerves I would imagine. I struggle on trying to cope, mind over matter and all that. At 9 pm Rebecca and I watch the X Factor, Steve and mom are not into this but I like to watch it with Rebecca. Still the pain continues. Nothing is taking the pain away.
X Factor over, I go back to join Steve in the kitchen and yet again we go round in circles on pain relief. Mom joins us, she knows we need professional help, where is the support network for cancer sufferers? What if I was I elderly or on my own with no internet for advice? I was given a prescription for oral morphine but no advice on how to take it or the side effects. Tramadol and Morphine make you constipated but I have drugs to take if that happens, they both can make you sick, again I have drugs to take if that happens. I get angry cos I don’t want to rely on drugs to make my body function like this. Steve keeps telling me that the tiredness of oral morphine will fade after two days once I’m used to it, I don’t want that either 2 days of hell so that my body gets used to a drug, no no no no! But the pain won’t ease up and I can’t get away from it, there must be another solution.
Steve suggests codeine which made me sick when I took it at A&E all those months ago so I have stayed away from it but it’s not as strong as Tramadol or oral morphine so I agree to take two. Within 20 minutes the pain eases and the sweet relief comes to the areas of my body that have raged for hours, excellent. Steve suggests that I try to sleep whilst I have these at maximum strength so at 11.30 I go to bed and awake at 4 am back in the same pain as I was in the night before. So the morning routine of one ibuprofen, 1/2 biscuit, coffee and a fag and now plus Linda’s hot water bottle, oh and I use the gel on my back and I finally feel the pain easing again. So that’s what I’m going to try today as pain relief, fingers crossed hey!
Why double trouble as the title of this post? Well the first trouble we have is to do with my quest to get screening for younger people and my Mr Wonderful has done some research for me whilst I watched X Factor.
In England we screen for bowel cancer from the age of 60. In Scotland they screen for this from the age of 50, why is they a 10 year difference? So if you live in Scotland you not only get free university education you also stand a better chance of surviving bowel cancer!!! 90% of new cases come from the age bracket of 50 + hence the screening and the 10% of us who get it below that age are not worth the public spending of money on to prevent/catch or cure bowel cancer. To these statistics I say to Steve “tell that to Steve’s family who died at 33 or Andrew’s family who died at 31″ but those are the facts. There was a case of a young girl aged between 5-9 who had it and 4 kids between the ages of 9-14 too, so sad. In my age bracket last year of 45 -49 there were 518 men and 462 women diagnosed with bowel cancer, screening from 50 would not have saved me or Karen or many others as the cost outlay doesn’t balance with the potential lives saved. Our lives are not worth the cost!
So what about taking control yourself and sending a sample away? Well you can do this but it costs £39 and a private company will test your poo for you. Now they must be making a profit and I have no idea of the true actual cost of the test. This I know will never work. The general public will not spend £39 and send their poo off to be checked and the government will not bring the screening age down to 40. So where does that leave us? At the very least we should be at the same screening age as Scotland and it’s a starting place, equal screening. It must be an awful job to look at the statistics and say no it’s not worth funding that and then read of families distraught with grief because they aren’t screened. I pity these people in the NHS as they can only do so much, they only have so much public money to spend.
The second part of my double trouble is Leanne AKA – BFF is coming for a long overdue promise of a Sunday lunch, her favourite is lamb. This was planned for next weekend as we had hoped that the chemo was working and I would still be on the chemo cycles but no, as normal we are not used to good medical news in this house so it had to be changed as next weekend I’m going to the Midlands on 5th to see old friends and family and then it’s Sophie’s birthday party on 6th. I just hope that I can get the pain under control by then. Anyway so the ‘Full Monty’ Sunday lunch of roast lamb with all the trimmings is planned, followed by blackberry and apple crumble (blackberries from my garden) so why would this be trouble you ask me? Well I’ve been slightly naughty and invited Leanne’s mom too LOL So this will be fun and I’m looking forward to having them both in our home. Janice, Leanne’s mom is excited as she will get her photo in the famous chemo gazebo and loves blackberry and apple crumble so it’s all good and completes my double trouble title.
Now today’s post should change to triple trouble, well not really as I had a visit this morning from Jane who used to do my hair for years, not only mine but the whole families but she moved to the Isle of Wight 14 months ago. I am so glad that she and Perry are happy over there in their new life. Here she is enjoying breakfast with Molly. Almost in the chemo gazebo. Jane is my partner in crime as I was so overwhelmed by the generous donations from the BHS store there that I asked Jane to take them a thank you card and a box of biscuits in for me, it was the least I could do for them. Almost everyday they send me a donation to which I am very grateful for, as I am with all donations no matter how small or large they are. They go to a great charity. Now talking of charity, Steve wants to do a naked bum calendar for 2016, tastefully done of course and Jane has offered to be March. If there is anyone else who would dare to bare their bum, male and female please let us know. Bet you are all saying ‘oh no I can’t do that’ well I don’t blame you as I’m not loving the idea but we want to raise awareness and Steve’s idea is to put an educational message on each month.
#Squirrelgate update! I was just editing today’s post with Steve when we heard Molly bark and she never barks, looking up we saw a squirrel on the fence with one of Molly’s balls which it quickly dropped. That’s one less ball for their ball pit or game of tennis later! Cheeky little things!
A quick update on my Twitter antics are that I have tweeted many celebrities but apart from Charlie Boorman and Peter Andre, my early successes no one else from the world of fame seemed bothered or they just think I’m mad. When Peter Andre starts ‘Strictly Come Dancing’ next week not only will I watch it but I’ll be voting for him too. Steve had a brainwave of searching for Patrons of bowel cancer as all charities have famous people supporting them so looking into this I have discovered that Freya North (Author), Kevin Sheedy (Football Player) Matt Dawson ( Rugby Player) and the lovely Floella Benjamin are some of the charities patrons with Twitter accounts so I’ve tweeted them. Lets see if at least they can support us. Floella was my favourite presenter on Play School (kids TV programme from the 70’s) and I was star stuck when I saw her at a Lib Dem conference having coffee in a local coffee bar. I was going to go and say hello but I thought it rude to interrupt her coffee break.
The blog as a book ‘Daisies and Dolphins’ is now available to download. Please leave a review and a star rating for me as others will only read it if they know others have recommended it, thank you. remember the book is free as this was never about making money it was only about educating others, sharing the journey and leaving a daily trail of love.
It’s 5.45 am and the morning light is just breaking through and today’s post is written that leaves me free to get some project work done or work and then enjoy my Sunday with friends and family
Thanks to Rita for her prayers and candles today as she will be burning those candles for us all. And a final good luck & thinking of you message to Guy and his family for tomorrow.