This is a long post so you will need a tea/coffee/beer plus chocolate biscuits, any excuse hey 🙂 Oh and it’s too long to read on the loo Mr Grump Bum and Ian, you will get cold bottoms and not to be read in the bath either as your skin will look 80 years old Kirsty!
I left you all on Friday with the weekends posts already written on abuse due to the weekend being planned with friends and family. So Saturday morning I wake at 4 am and the pain starts again. I take drugs and wait for it to ease but it doesn’t, so two hours later I take my other drugs early to ease the pain but it doesn’t. After another hour of watching the clock go by I start taking morphine. A small dose to start and I wait for it to ease but it doesn’t. Another hour goes by and I take more morphine, this continues until 9 am and the pain still hasn’t eased up at all, just the constant pain, a deep ache that refuses to go away. Jani from the Beating Bowel Cancer charity has been sending me messages as she is trying to help with getting the Macmillan nurses to come and see me. After 5 hours of constant pain and reading her words of support and kindness I can’t cope anymore and for the first time I sit and cry with self pity.
How can I possibly get up to the Midlands with this pain, how will I cope with the journey. I don’t want to cancel, I don’t want to let everyone down but my spirit and self resolve is so low, I just sob alone and hope Steve wakes up soon to help me. Steve wakes just after 9 am and the despair in his face as he listens to my plight and hours of pain is awful. I hate sharing my despair with my loved ones as it only hurts them. Steve gives me more morphine and we wait it out to see if the pain eases, which it starts to do, I have taken enough drugs now to kill a small horse! We have put no pressure on ourselves in terms of time of arrival at my mom’s so we just wait it out.
The pain eases at last. Breakfast and packing done we head off for our weekend of picking daisies. We stop on the M42 for a coffee, Steve drops me and Rebecca at the front doors so I don’t have to walk far and goes to park the car. I didn’t take my ‘Rosie and Jim’ style walking stick which I regretted very quickly. The walk to the seating area, then to the loos and then to the car was all too much. We arrive at my moms and the raging pain returns. Mom has set a sun lounger up outside for me to rest on but even with more drugs taken I can’t escape the pain. Mom and Steve sit with me in silence as I twist and turn, sit up and then lie down again trying to cope and escape from the pain. After about an hour Steve suggests that I take the maximum strength of morphine and try to rest in bed upstairs as my moms neighbours are doing DIY. Music, sawing and hammering fills the air and in fact replaces the silence of the despair. I will agree to anything at this point just to be pain free. Morphine taken we head off to bed to rest and I do sleep for 2 hours, fantastic. When I wake I feel good, thankfully the pain has eased into a dull roar.
Steve and I return downstairs to find Nanny Jan (neighbour) chatting away to Rebecca and mom. Nicky and Beth join us too as she has been waiting to come and see me but I didn’t answer her messages due to the pain. As the hour goes by and more drugs I feel better and better. I am now looking forward to the evening and hope that the pain is now under control. Steve helps me shower as normal as the simple things in life can be difficult and my arm has to be kept dry so I look like a chicken drumstick with my cling film on. Dressed and all ready we head off to meet everyone but my mom and Steve are worried about how I will cope. I have agreed that we will leave at 10.30 as I also don’t want to be in pain all night again.
As we pull into the Lawnswood car park the first person I saw was Tony Dalloway and his wife Debbie. So pleased to see him after so many years, hellos said we head inside. Now I could write a novel on the evening alone. The laughs the memories and the shared joy of just being with everyone, plus the fact that I had made it there with the day of pain that I had endured, I was just so pleased I had made it, I can’t tell you how pleased.
Dorothy Goswell came, another ex boss who taught me so much and even with her own health problems she pushed herself to be with me, thank you Dorothy. Norma who I have spent many a happy hour with in pot wash on a Saturday afternoon, whilst we worked with Dorothy at Debenhams. I didn’t get a photo of us together, so next time hey Dorothy. Everywhere I look I see familiar faces. Aunty Shelia, Jack and Daniella have come too, I miss my cousin Nicky and Karl but they are away for the weekend.
Even Nicky’s Mom and Dad are there and they don’t do pubs at all also this is a massive compliment. So many school friends have turned up it overwhelms me as I was just so happy to be with them. I turn around to see Sarah Mylam walk in OMG and she doesn’t even do Facebook but reads the blog daily. Thanks Sarah as you look amazing with all you have been through.
Nicky has got us all tables around the corner so we head there. Steve tells me to sit down every 10 minutes throughout the evening as he has seen the pain of my day and to others I must have looked so well and he was just being over protective, but he knows my suffering. I felt well, the excitement of just being there kept the pain at bay.
We all laughed hugged and talked for the next two and a half hours. Karen and Hilary had also brought their daughters and it was lovely to meet them. Karen brought me a bag of goodies which turned out to be biscuits but OMG so good, Borders and Thorntons, they will make me smile every morning. Tammy brought me a gift, so lovely to finally also have a hug from you after all these years. I said I hoped it was a vibrator as she said it would help me and Steve. It turned out to be an old fashion service bell which now is in pride of place in the chemo gazebo. Hilary and Louise have agreed to bare their bums for the calendar. So I show them a shot of Steve that I had taken the day before to give them inspiration and ideas. April arrives with her man, Nanny Jan and husband Dave turn up again not expecting that as pubs aren’t their thing either.
Simon arrives and I haven’t seen him for 30 years!
He came with Jimmy Ross. Now he is the JR in Saturday’s post and after all these years I finally get to say thank you to him for protecting me from being beaten up by DY all those years ago. One of my heroes and I also introduced him to my daughter who was impressed that she had met one of the men that tried to save me. Aunty Cynthia and my Uncle Phil turn up with more goodies, Keithy Cox and Neil Stanway also arrive, Neil wanted to buy me a drink, we had stopped at a cash machine en route and I’d taken out £100 to buy everyone a drink but I never spent a penny all night. Not bad this cancer stuff hey, well the truth is I only had one lemonade and lime all night as drink is now off the menu completely with the drugs I take.
Michelle arrives and it’s so lovely to see her and I finally get a hug from her as we talk via messenger a lot. Jordan and Andy (her dad) come too, Jordan is very special to me, long story but she is the one that finally brings tears to my eyes as she has suffered too much in her little life although she is happy now and I am pleased for her but the pain of her losing her mom is always there for her and Alistair her brother.
So after hours of chatting and of course talking about the blog which they all love it’s sadly time to go as the agreed time has come. I start saying goodbye and joke that I’ll be bald next time we meet. As I make my way through everyone I look back and see Louise sitting in silence, miles away in thought, she looks so sad. We had just spent hours laughing but now she is sad, I wish I could read her mind. I catch her eye and say ‘no tears’ and she smiles back but I can see how upset she is. I didn’t want to leave you all, it was so precious just being able to laugh, talk and pick daisies with you all. It was also lovely for Steve and Rebecca to meet you all too. I can’t tell you how much it meant to me that you all made the effort to come and join me that night.
We return to my mom’s and I’m still okay and the pain is under control but Steve is now worried that I’ll not be able to cope on Sunday and that the raging pain may return. We head off to bed with morphine taken and again I sleep but I wake after two hours and head downstairs to take more painkillers. I won’t bore you with stories of another night of endless pain and drugs.
Sunday we travel up to Burton for Sophie’s 5th Birthday Party. Now taking so much morphine and co-codamol makes you constipated and I have only been twice in a week, my stomach has started to swell and take on the look of a bouncy castle again. So the cancer pain is fine and now I have to deal with wind and bloating. My stomach is so big by the time we reach Burton I have undone my skirt. We spent a lovely two hours with Steve’s family and the lovely Sophie. We finally got to meet Jacob and I gave him his afternoon bottle 🙂 thanks also for the coffee Andrew, you know me well.
We head off back to Wycombe at 2.30, pain still under control with drugs but I’m burping all the time. Steve says that it’s laxatives for me when we get in, I try to argue against this as the new chemo is supposed to be bad for diarrhea but he is not listening and when we return I have to take it but I am secretly glad too as it’s uncomfortable. We stopped for a coffee at Warwick, I head for the loo with Rebecca and my ‘Rosie and Jim’ style walking stick this time. I bump into Tina Farmer, she and Ray are from Wycombe. I haven’t seen her since I have become ill so it must have been a shock for her to see me coping with a stick. You never know who you will bump into hey.
Molly is very excited that we are home. We unpack and Steve and I sleep again and when we wake mom has arrived. She is down for the week due to new chemo starting. Bless her as I won’t have to worry about Molly having her walks or the ironing all week, thank goodness for moms hey.
After curfew and ‘wack a comment’ my favourite game we head off to bed with morphine taken I am hoping for sleep. I manage half an hour and then I have to get up because of the pain, Steve won’t sleep unless I’m asleep and I can’t have him awake with me all night, so up I get and downstairs I go so that Steve can sleep as he has work in the morning. I took 2.5 ml of morphine 1/2 an hour ago so I take the other 2.5 ml that’s the allowed dosage. Still the pain rages, at 3 am I can take neurophen so I take that and still the pain rages. At 5 am I take 2x co-codamol and still no release, at 5.30 I take 3 ml of morphine and still I’m in pain. Now by 7.30 when Steve wakes up I’m just mentally and physically too exhausted but at least help is coming today with an appointment this afternoon with the Ian Rennie nurses. Steve asks a very important question “who is in charge of my pain?” Well who is, a great question, he looks it up on the internet and gets nowhere so we agree that I’ll ask the nurses this morning whilst I’m having chemo. I finally sleep until 9.45 and I have to be at the hospital for 10.30 so I get changed and pack in two coffee’s and two fags before mom and I set off as I want to be on my own during treatment and get some project work done.
This post is getting too long to go into more details of the wiggy woman the people I met on the Sunrise ward and what happened so I’ll write about it tomorrow as you are all probably bored by now, got cold bums or winkled skin.
But just to let you know that Steve picked me up to tell me that the Ian Rennie nurses had been in touch, that it was too late to see me today but were coming tomorrow. Now Steve has had a long chat with them and he has high hopes of help at last but I’m really angry as I face yet another day/night of lonely pain which will just not go away. How can they be so busy when they arranged the appointment?
On a lighter note the chemo side effects are easier, I just have to carry around a bum bag of drugs connected via a tube in my arm for two days and just a few anti sickness tablets to take.
Thanks to Rita’s sister who, whilst Rita has been on holiday has covered my prayer list. Thanks to Mary Poppins who today sent me a TENS machine and I thought this was fabulous as even I didn’t know I was pregnant, Steve will be pleased 🙂 and finally all of the wonderful messages I have received both on the blog and privately about abuse. Was it the right thing to do to put it in the blog? I think on balance yes, as so many suffer in silence, so much hurt and pain out there and the LC mentioned in Saturday’s post is going to use the post in her counselling session to help others going through domestic violence as she knows the story is true cos she was there and saw some of it and because it may help others, mission accomplished I think.
They say there is a book in all of us in terms of life experiences and suffering but most people just hide it away. I did for 30 years until Steve changed my life cos he believed in me and gave me the courage to face my fears. We all need a Mr Wonderful in our lives hey.