So after a lovely 2 hours sleep yesterday Steve woke me as I was expecting Mr Grey and Elaine. I quickly finished yesterday’s post and with final edits done by Steve I hit the publish button on my laptop. Within about 30 minutes my mobile rang and it was a no caller ID but I answered it as sometimes it’s the hospital or if it’s a PPI call I have great pleasure in informing them that my number is on the TPS list and their call is illegal and I will report them. Which of course I can’t as the bastards have got round the law by phoning from another country. But it was neither, it was a call from Tessa, she is from the Rennie Grove Hospice Care foundation (never heard of them) following my referral from my GP. Wow I thought finally we are going to get some help.
They want to come and see me at home but they are so busy they can’t come until Monday (good job I’m not urgent hey!) But Monday is the first day of chemo and therefore we have arranged for them to call me in the afternoon but agreed that I may not be up for visitors on that day. So I’m almost there with help for my hubby drug lord and getting some help as we sail through this mad ocean in our lame boat with my broken outboard motor with no spare LOL. The journey of odd named drugs, side effects and understanding of the process. Palliative care is not a name I like to use as for me it implies the end of life but as Rita warned me yesterday, “don’t you give up fighting girl or I’ll be back to knock some fecking sense inters you both.” God love her.
So there you go, all you need to get help is to have stage 4 cancer, be in agony, 4 referrals, two 3 trips to your GP, too many sleepless nights and a follow up phone call from your GP and you can finally get someone who may be able to see you in 5 days time, marvelous don’t you think? NOT!
Steve was due to finish work at 8 pm so the plan was to have steak cooked in my outside oven once Mr Grey and Elaine had gone. They were running late as they had to put a Spectacular Event on at work but they finally arrived bearing birthday gifts 🙂 They brought me a fleece throw and a V shaped pillow for my chemo gazebo, which I was delighted with as I was going to get a fleece blanket for when the weather changed and also brought me a ‘Mont blog Pen’ it’s a private joke and we all laughed, excellent presents. The photo is a little grainy but it was late and in poor lighting in the famous chemo gazebo. Elaine was disappointed in the chemo gazebo, she had images of a grand design not a £20 one from B&Q, sorry Elaine but with your design and arty farty skills you could always design one for me 🙂
Mr Grey, Elaine and I were part of the Uxbridge new concept store opening along with Ruth, Ged and Brian. We had been through some interesting challenges together and remained friends ever since. Rebecca was upstairs but after they had gone she said she could hear the endless howls of laughter coming from the garden. We had a fabulous hour together, thank you Mr Grey and Elaine. I did ask Mr Grey when were we going to write 50 Shades darker to which he laughed due to his lack of experience, but this maybe I project I will start but probably with another man for the male perspective, any volunteers???
Steve and I really enjoyed our steak, new potatoes with peppercorn sauce but I wasn’t hungry. For the last two days I had only been eating twice a day. Apart from the endless Celebration chocolates that I have been consuming but you can’t count chocolate can you LOL? I knew why I wasn’t hungry and I had to confess to Steve. My stomach had become very bloated and swollen, not due to the tumours but because I hadn’t been to the loo for 3 days. Now pre cancer days I could go a week or more without going, without a worry but following a 1/3 of my bowel being removed this was extremely strange for me indeed. Steve went straight to the medicine cupboard and pulled out the box of laxatives, oh the joy of life hey! The liquid was orange flavoured and I gagged as I tried to drink 125 ml. Yummy pudding following a sensational steak! My stomach started to make funny noises and I become increasingly uncomfortable but at least it wasn’t due to cancer pain for a change.
I wanted Steve to get a decent nights sleep as if we go up together he just worries, if we go up separately he still worries but if he goes first then he will eventually nod off. So alone I sit and reply to all my lovely messages to you all. I then start to convert the last 10 posts into the 2nd book which I was going to call ‘Pushing Up Daisies’ but I think the title lacks hope so if anyone has any ideas for a better title for the second book please let me know. I also copy the comments left on my blog as your words are a trail of love and support that I don’t ever want to forget. However I did tell Rita that her comments alone could become a book, God love the bones of her, as Rita would say.
So it’s midnight and things start to move, if you get my drift, I was thankful of the relief, constipation is a known side effect of co-codamol and morphine. By 12.45 I take another dose of painkillers but by 1.15 am I was tired but equally knew that I was in too much pain to sleep. I took 2.5ml of morphine and slept comfortably until 6 am, wow! Excellent, but not for Tia the ungrateful rescued cat who has got used to breakfast being anytime from 4 am. Usual routine of now feed ungrateful cat, painkillers, 1/2 biscuit/Celebration chocolates, coffee and a fag and I’m ready for my day.
I’ve planned nothing for my day today and following two sets of visitors and the hospital visit yesterday I need a restful and peaceful day. I plan to get some project work done and the pre write two posts for the weekend as Saturday and Sunday I am visiting the Midlands and my promise was a post everyday so what to write about in advance? You will have to wait and see hey.
Molly joined me in the newly pimped out chemo gazebo gifts from yesterday. Doesn’t she look cute hey. I spot a squirrel and quickly grab my phone to record the cheeky bloody thing but he was too quick for me. There is only one ball left in the garden for them to pinch so Molly was also after the thief.
Steve was on the 10-6 shift today so he woke about 9 am and we sat chatting as we always do. I am going to get stuff sorted today. I firstly rearrange the missed dentist appointment from the other day for tomorrow and then I call the M&S and Arcadia pension funds to find out what would happen in the event of my death and who I have nominated as my beneficiary. I am shocked at how much I am worth dead. The government changed the law recently and now if diagnosed as terminal you have the option to release your pension early but you do have to pay 25% tax on it, which is fair enough as you don’t pay tax on it when you save it. So that gives us options if we have to face that.
Now I’m hungry and cook a sausage and cheese sandwich for us plus two extra sausages to be shared between Molly and Tia. I take another lot of painkillers and fall asleep, the next thing I know it’s 2 o’clock wow where did those hours go? But as I wake up I am an hour late with my other painkillers and my back is in two with pain. I take more drugs and have a coffee whilst my wonderful hubby rubs ibuprofen gel into my back. I then receive a call from Leanne who is from Beating Bowel Cancer. She has arranged an awareness day in Wycombe for Saturday 26th September and we discuss this event plus much more over the next hour. Beware my friends in High Wycombe as I will be shamelessly asking for help on that day, or you could just volunteer to save you from my begging phone call 😉 #justsaying.
I have to say a massive thank you to Julie Davies for her donation, she is the Store Manager at BHS in Walsall, or if you come from the Midlands we call Walsall yam yam land, a term of endearment honestly. Thank you to the anonymous donor too but I wish I knew who all the anonymous donors were so that I could say a personal thank you but I do respect everyone’s privacy. I also received in the post today a lovely hand knitted blanket which someone took a lot of trouble to make for me. The package had split open and the post office had done their best to get it to me in one piece. The only clue I have is from the tracking number which states that it was posted from Milton Keynes, so however you are thank you. Plus I had a lovely letter from Heather, who lives locally and again I appreciate everyone’s love and support.
Thanks to everyone who has been outraged at the lack of support we have received from Macmillan. Tweets and emails to them have just resulted in them asking us to phone their general helpline number. We haven’t done this as we now have support coming from the Rennie Foundation, following the GP following up on this for us. From Beating Bowel Cancer who are super supportive, as always and I also received an email from our local hospice where I attended counseling the other week with offers of help, So Macmillan can forget us phoning them again as I think we have asked more than enough times for their help. If they can’t even call us then forget it as any help now would seem false, forced and empty.
Now tomorrow is an exciting day for me as the ‘Stud Muffin’ himself, Uncle Peter is coming to visit. He is in England for just a few weeks before returning to Australia. He is the policeman in the Cancer Free song and following his brain surgery and all the worry over his health I am so looking forward to seeing him. With pain now more under control we are taking him out for dinner. Richard I hope will be able to join us in time. So tomorrows post will have to go up early so that I can spend some lovely, long overdue time with him and my loved ones.
So I’ll leave you all for today and catch up with you all tomorrow xx