I was so excited for this weekend to come around. Richard was coming home and I haven’t spoken to him for 3 weeks, well not face to face and I miss him so much. Mom was returning just for the weekend as she went home for a break and Steve with the help of Mr Big has been working hard to erect the new units in my mom’s room so I wanted her to come down and see what Steve had done for her. She now has a lovely room with a wardrobe to hang her clothes and a lovely chair. I just really wanted to do this for my mom who deserves it so much. Mom arrives first and she loves her room. She has brought gifts for it and turned up the curtains whilst at home. She is now excited about putting art on the walls and making it her own space.
Chris and Bethan arrive and it’s lovely to see them again and Steve as we planned takes them into town for their time together whilst I remain her with Richard and Louise, quiet time just to get Richard up to speed on the stuff we are doing and for him to just be home. Chris is a wrestler and Saturday evening he was in a local show which Steve and I were looking forward to going and seeing.
Just family time together was the plan for this weekend, no stress just to be together, well that was the plan but like all things in life plans don’t always work as you want them to and so to explain I have to go back to the meeting on Friday with Dr Weaver.
So chemo and my ability to deal with it whilst unpleasant is going well. I’m on maximum dose and we keep going plus the extra drugs via the funding after the 1/2 way scan at mid November. The problem is that my bowels are on close down here and we have to get this sorted out. I have a prescription for Monday to collect as the laxatives I’m taking are just not strong enough. The lack of taste means I can’t finish a meal and I’ve been living on sweet things, not good hey? At each appointment you are weighed and I am back to 61kg which is where I was the first time I was weighed following the removal of the 1/3 of my bowel. So I’m losing weight which I don’t want to do but my stomach is constantly swollen and nothing moves.
Steve and I discuss solutions and I started Saturday morning with yoghurt and fruits, so I have eaten prunes, raspberries and peaches for breakfast and I can taste them. The plan is to eat roughage and try to get protein into me and not just ice cream.
The day was going well, the plan was working. Everyone was left feel to do what they wanted for their evening meal and after ours the plan was for Steve and I to go and see Chris wrestle at the local show.
At about 4 pm Richard, Louise and I hit the ‘Love Tub.’ Now normally I do about 20 minutes and then I come out. Not today as we were just enjoying chilling together I was in there for about 40 minutes. Once out as normal the pain returns but that’s okay as I’m used to that.
Being in the water makes me hungry and I start eating as I feel week and shaky. I eat more fruit and ice cream, plus biscuits and drink a lovely hot chocolate. Still unsteady on my feet I ask Steve to come with me to dress me in case I fall on the stairs, I just feel so weak. Dressed and happy I return downstairs and the takeaway mom ordered of Chinese arrives. I do manage to eat some of it but not a lot. So Tiramisu for pudding. yum that just slips down. The plan is going well as I have had protein too.
And then the pain started, the lack of bowel movement means I blow up, this puts pressure on the tumors in my spine, I can’t burp or fart and I’m swelling up. Most people could walk it off but I can’t walk, I’m up and down, I can’t release anything, hours go by and no release. I am then hit with fatigue and I’m just a bloody mess. The trouble is that if I’m okay the whole house is okay and everyone is happy but if I’m suffering in pain and no one can help me it’s just soul destroying for them all. They try to act normal, offer things to help, try normal conversation but this is so hard for them all.
I drift off and now it’s too late for me to join Steve in going to see Chris wrestle and I really wanted to do this but there was no way I was well enough to go, so Steve had to go alone, this upset me as it was something that really wanted to do. Richard returns from his meal with Louise but yet again I’m in so much pain that it’s so hard for everyone to see.
I continue to try to deal with the pain and extreme fatigue, my weekend plans of family fun ruined. Steve wakes me at midnight to take my last drugs. I take them and by now I’ve had enough too and just take 5 ml of oral morphine. I tell Steve to go to bed as he needs his sleep and I remain in my dream machine waiting for the relief of the morphine. This starts to kick in within about 10 minutes and I regret not taking the morphine earlier but morphine slows my bowels down and round and round it all goes, never ending cycle of pain, bloating and swellings.
Once the morphine had kicked in I felt really bad as I hadn’t been on line at all or even looked at my phone. I hate not replying to everyone and thanking you all for sharing. I picked up my phone and started to read through the emails and I just sat and sobbed and sobbed and sobbed. Beautiful words and love, friendship and support come flooding in to my house daily and I consider myself so blessed.
You all say how strong I am and that I am inspirational and I’m just not at all. I’m scared and sad. I hate the thought of not being alive with my loved ones and leaving them. The withdrawal of vital drugs to others behind me in the chemo queue just upsets me so much and whilst I have been lucky by 3 weeks the thought of others not having that treatment available just makes me cry. So I cry and cry and then I have a nose bleed. I’m so sick of feeling ill. I had let everyone down that night by being ill and I just find myself needing to sob.
After I had pulled myself together I decided that I need to see if I can get my bowels moving again so I stay up and do a self enema but whilst it worked it wasn’t impressive.
I decided that I have to try to sleep and go to bed at 2.15 only to wake up at 4 am but at least I slept. So after 11 hours of pain and agony finally my body is under control again. I have been okay so far today and I have managed to catch up with all your comments which mean so much to me and sorry I didn’t reply earlier plus sorry if I woke any of you by replying between 4 – 6 am this morning.
Anyway it’s a full Sunday dinner here courstey of my mom. It’s been lovely having Richard home for a few hours and I’m excited as he is also coming home next weekend to help Steve build Daisy Den :-).
Whoever sent me the lovely china mug I really appreciate it but it arrived broken and we will try to contact the post office to sort this out but I don’t know who sent it but thank you anyway.
The calendar has got you all super excited which is fantastic and the blog is getting over 1000 hits per day during the slow reveal. Thank you all for supporting me but we have to wait 3 weeks for the print run and then get them out so hold on promoting it until I can get the pre-order form up etc so we can take orders.
Now it’s happening a few times that through you lot sharing my blog that people get into it and start reading it daily without actually realising that you know me or my family. This happened to Nita who contacted me to say how much she enjoyed my ramblings. We soon discovered that she knew me and was great friends with Julie my sister and I know that my mom had photos of us as children. The first is of me and Nita brushing our teeth in a stream on a Woodcraft holiday in Lockerbrook and the second is of Nita, Julie and Tracy Skinner. See Nita I said my mom had these photos and it’s lovely that I can share them with you. Sorry they are a bit grainy.
I hope that you all have had a lovely Sunday and had picking daisy moments with your loved ones.
And finally thank you Rita for your weekly prayers and as usual Rita always sends me the proof of burning down the church, God bless her.
‘Bostin Bums’ big reveal for today is………….
I’m so proud of my school friend who produced this fantastic shot for us to use in the calendar. She offered to do it and we were just amazed at the effort they went to. She is featured with her daughter and friend. They have gone to the trouble of all wearing making hats, and holding swords. Absolutley fantastic and I’m proud to introduce to you the 3 Musketeers as your Miss Mays
So here is a double bum shot taken in the local open air swimming pool. Now the angle we were going for here was the fact that I don’t want to swim with Dolpins before I die. It’s not on my ‘bucket list’ So a very dear friend joined Steve and so I’m proud to announce Ms June.