We were expecting photos for the calendar to come in tonight from the Juddy’s but nothing had arrived. I was excited to see them. I know that this is Steve’s project but I have been amazed at the effort that has been put into the photos so far and I think it’s going to be a real success. We don’t have perfect bodies and we aren’t professional photographers but that’s actually what I love about the photos so far, they are real. Real people showing their real bodies, not airbrushed or altered in anyway.
Steve announces that he has received an email from Teresa. Now I’m super excited and also a little worried as what do we do if theirs or anyone else’s that comes through isn’t good enough? I need not have worried OMG the photos are fantastic and now I just can’t wait for it to be finished so that we can show the world. The effort that the Juddy’s and others have put to in these photos is just amazing. I am overwhelmed at the effort, passion and commitment to producing these photos for me. I love that people that are becoming part of my journey, the video first and now the calendar. I’ll have to come up with another wacky idea just to keep the fun going. I also enjoy a long chat with Teresa, which wasn’t really allowed as it was curfew time but after seeing the photos I had to talk to both her and Ian to say a massive thank you to them both.
Now I don’t want this blog to turn into my sleeping post but I have to share the good the bad and the ugly with you all as I’ve always promised it’s ‘warts and all’ so last night the pain in my back started to increase from around 10 pm, I took painkillers and knowing the signs I was now dreading the night ahead.
Steve was on the early shift today so he wanted to go to bed before midnight. Mom and I stayed up to watch the XFactor but unlike other Sunday’s episodes it was 2 hours long so we only watched ½ an hour and then mom went to bed.
I stayed up to play my favourite game of ‘wack a comment’ and to take the last drugs of the day.
Drugs taken I always like to give them at least ½ an hour to work before I try to sleep. Now the plan was for me to take 5ml of oral morphine before bed so that I can sleep. I’m not sure about this amount so I wimp out and take 3 ml so that I have 2 ml in reserve. Morphine taken I head off to bed at 1.15 am.
As soon as I lie down the pain starts to build and build, I toss and turn and toss and turn. I even try to sleep on my front, which was something that my mom suggested I try. Nothing worked at all, I gave it ½ an hour and was back downstairs at 1.45.
I could have taken the other 2 ml of oral morphine but I wasn’t feeling well. I had a headache and it felt like I had a hangover but of course I hadn’t had the fun of drinking first.
At 2.30 as I can’t now get comfy on the sofa in the kitchen I go into the chemo gazebo and although there is a cool breeze it’s refreshing and lovely to be outside.
Between 2 am and 7 am I think I got about 2 hours sleep as once the intense pain starts it won’t stop. I didn’t call Ian Rennie nurses as I didn’t want to take any more morphine. The pain is not as bad as the previous night so I just wait it out.
Rebecca, mom and then Steve wake up and they are all disappointed that yet again I have had no sleep really. I reassure them that the pain is better in the day and therefore we have to give the new drugs a chance, plus if the tumours are pressing on a nerve then the pain will be worse when lying down.
I checked the BBC news this morning and I was encouraged to read that Cancer Research UK has been a driving force behind a trial to test for bowel cancer in different areas in Britain from 55 years of age. As I read the article I’m sad. The take up rate for the test was poor and even less people did the test from deprived areas. 41,000 people each year are diagnosed with bowel cancer and of those 16,000 die. Mark Flannagan, the CEO of Beating Bowel Cancer has previously said:
“If they all performed as well as the best, thousands of lives could be saved and millions of pounds could be freed up to be used for other bowel cancer treatments, which patients are frequently told are unaffordable.
Every penny that we’ve raised and others like me go towards keeping him and others in their positions in order to raise awareness, assist research and for Mark to influence central government.
Now I’m excited this morning as the builders are due to start the foundation work on Daisy Den. As promised they arrive at 9 am and once builders tea has been supplied the ground is marked out and I sadly have to leave them all to go for chemo.
Mom drops me off and I head to the Sunrise Ward. I struggle walking to the lift as I’m carrying my bag. The lift took ages to come and the dragging pain in my leg is hurting as is my back. The usual nurses are there and they all greet me with smiles and as I get to know them the conversations have gone from poo to how was your weekend, the latter being a much nicer topic I think. I select a window seat in bay 1 and the chair worries me, as I know I have to sit in it for over 4 hours. I ask about my CEA levels (cancer markers in the blood) previously they were 4.4 and then they increased to 6.6 and the results from Friday are that they have reduced to 2.7. OMG I text Steve straight away with the good news and as these levels are the same as a non smoker he questions my smoking levels and clearly I need to increase my fags, lol only joking, but finally some good news. Dare I dream that this chemo is working and may extend my prognosis?
I get myself settled and start today’s post as the treatment is given, as the time goes by as with the first cycle the pain starts to ease. Just over 2 hours into the treatment Mary from the High Wycombe BHS team comes to sit with me, she arrives with Costa coffee and a chocolate muffin. We sit and talk for about another hour and I then need a wee. Without thinking I stand up and walk normally, I’m so excited at this, I just can’t believe the difference in me. I return to Mary and ‘wiggy woman’ arrives and we go through to her salon (which is not a salon at all it’s just a treatment room). Mary comes with me. The first wig I try is fantastic if I was on the game, it’s full and long and very sexy. We agree that its lovely but slightly wig like. The second one is amazing and I have fallen in love with it. I joke that I’m excited to lose my hair now. I confess to ‘wiggy woman’ that it’s her nickname and the nurses all know about the nickname I have given her. She loves it and laughs. She also remarks on the difference in me from just two weeks ago when she said that I looked ill and she remembers that I was relying on my walking stick, as today I walked in there without it although I was still connected to the drip wheelie thing. Mary even tried on the wigs and we all had girlie fun with the different looks. I hug ‘wiggy woman’ as I just have to, she has just made cancer and the possible side effects fun and I appreciate it so much.
Mary and I returned to the ward with me wearing the wig, I love it so much that I’m going to wear it to go home in to see what their reaction to it is. The nurses love the look and I pose and pout to make them all laugh. Treatment over I text Steve to tell my mom to come and get me. I walk out of the ward holding my stick not using it, I’m smiling and happy. Mary carries my bag and we stand at the front doors waiting for mom. It’s actually Steve who picks me up, I say goodbye to Mary with a hug too and get into the car. We chat on the way home but Steve says nothing about my hair. I walk into the house and my mom takes one look at me and says ‘wow’ that’s amazing. Steve then finally notices and we all spend the next hour just happy, happy about the CEA levels, happy that I’m feeling so much better, happy with the wig look and happy that the work has finally started on Daisy Den. Here is the progress they have made in just one day.
So it’s been a good day, whatever tonight brings I have had a great day and I’m confident that the new pain regime will work and that I have hope of being able to live again soon, do normal stuff like driving, walking the dog, hugging my hubby, lying flat in bed without pain, visiting friends, dare I say go into work and all the simple things that I have missed out on lately and I long for everyday.
I did promise you a photo of Molly’s new toy which Nicky brought for her, it’s amazing and when it’s dark she looks like an Ood (this will only make sense to Dr Who fans, so that’s just you Mr Grumpy Bum lol and my hubby of course). Thanks Nicky and we will enjoy this toy during the long winter months.
Finally a massive thank you to Rita who hasn’t been feeling well lately but still went to church with my prayer list. Here are the candles see lite for me, Karen, Frankie, my loved ones and for peace for everyone, as that was my prayer wish list for this week. Thanks Rita, our angel xx