Okay so I left you all yesterday as I was cooking for BFF Leanne and the wonderful Andrei to arrive for tea. I’m super excited to have them here in our home. I agree to pace myself with the meal so that I can cope with the cooking. I cook the curry then rest, I cook the rice and then rest and finally I am trying to make home made Peshwari naan breads which I do but as it’s new to me it takes a little longer than planned and so I’m still cooking, flour everywhere and they arrive. I don’t care that I’m not ready and they didn’t either. Greeting done the evening flew by and the conversation flowed beautifully like we had only seen each other recently however sadly it had been 6 years, that took us both by suprise. Old memories of BHS work conference parties and laughter filled our house as we relived precious memories, my meaning of life, sharing precious moments with people I love.
Rebecca was at her weekly maths class and Steve had to go and collect her. Just as he was leaving he asked Andrei if he could be cheeky and asked him if he would help him to carry Mom’s wardrobe door from the garage to the bedroom to help him fit the door. Now I didn’t know he was going to ask him however I could see his logic as after the weekend trauma between two men the job would take less then 15 minutes but with just me for help it would have been maybe hours of struggling and frustration. Andrei agreed and when Steve returned they set to work.
Andrei said that his mom would be proud and so I took photos of them and the fun they had.
Andrei was followed by BFF who got involved in a leg screwing competition against Andrei but Andrei won. Again fun and laughter throughout my house.
On the serious side of cancer the conversation flowed. Andrei was genuinely surprised and shocked at our story, the NHS shortfalls (not their fault) the charities replacing the NHS service and as I am the same age as his mom he worries more, probably just can’t even contemplate being in my children’s or hubby’s shoes. I wants to help, I can see the empathy and caring in his eyes. After food and DIY we all enjoy pudding with ice cream which Andrei had supplied.
A beautiful evening spent with wonderful people, I cried too much throughout the evening but I am always just so touched by how lucky and blessed I am by the people I know. All too soon the evening was over however Andrei is jealous of the psuedonyms in the blog and wants his own. Now Andrei is super sexy and a Bond Man style operator so we have decided to call him Mr Big after the Bond Film ‘Live and Let Die’ however Andrei thinks it’s his size 11 shoe size that has got him that name lol, lets hope that his mom doesn’t read today’s post hey.
So everyone asleep and I’m on my own playing my favourite game of ‘whack a comment’ it gets to 1.20 am and I thought I’ll just check my bank account to see if the money has gone in as with the Hot Tub coming I’m worried about paying for everything. I check and it’s there, I’m so excited. I quickly pay mom back the money she lent me for daisy den and a few more payments I owed and than I’m not stressed. I stay up until 2.20 am excited about tomorrow and wonder if I will ever be able to sleep. As I lay down the pain started but I didn’t want to take oral morphine and hope that I can sleep through it. I couldn’t believe it when I woke up and it was 6 am, OMG I slept for nearly 4 hours, wonderful.
Steve wakes and we plan our day of madness. Steve has to start work at 12 so breakfast done we set about the morning jobs. The crane arrives at 9 am and Eric sits in his crane waiting for the team to arrive. He comes in for toilet breaks and coffee occasionally. The electrician arrives to fit the new outdoor wiring, the internet man arrives to switch over the broadband connection and our house becomes a sea of madness as the pool arrives too. The street is awash with vehicles, crane and workmen, our poor neighbours.
I recieve a parcelled gift from the Juddies, so thoughtful, thank you. Then in the afternoon I recieved a beautiful gift from Louise, it’s a love sphere and inside was a beautiful necklace with a pendant ball of daisies on it. Now how spoiled am I today? Blessed beyond belief and I cried on and off for 3 hours as these people all came together to make my dreams come true. Thank you all.
I also had a call from the wonderful Marina from Ian Rennie this moring. She has organised for me to see a top pain specialist on Monday at Wycombe Hospital to get my medication under control working with the Oncologist team to help me. This is a charity! How amazing is all that? Marina you are a star and thank you so so much.
So the hot tub is in and heating up. I am completely knackered and going to try to shut my eyes for an hour as it’s been so mad here. I can’t wait to get into the hot tub but the temperature is only at 22 degrees and so it maybe tomorrow before I can use it but I just can’t wait. So I’ll sign off as I am tired but so happy and what a mad 24 hours we have had.
Here are a selection of photo’s from our mad day.
And finally, Daisy Den has a delivery date confirmed for Friday, 23rd October, and film of the crane will be coming soon.
So morning all however although yes you guessed it I woke at 4.30 am as usual and it’s now 5.30 am for me, you may be reading this tonight after your long day at work or on the way back from work or if you’re naughty reading at work whilst pretending to work on some important document that’s urgent, good idea hey. Anyway this morning the normal routine arrives in the form of the Tia for breakfast and usually Molly briefly looked at me in the kitchen performing my teeth brushing, cat feeding, coffee, 1/2 biscuit followed by a fag and decided to just return to bed. I’ve taken the first of my tablets which is a 3 hour ritual before I can eat, well apart from a bit of biscuit after each tablet as a reward, that surely doesn’t count? Biscuits shouldn’t count toward any calorie intake for the day for anyone.
So when I woke this morning and it was 4.30 I was 1/2 awake and 1/2 dreaming stumbling through the routine. I thought that I had cracked it all, a eureka moment and this was my dream: I wake at 4.30 not because of pain but because a neighbour wakes for an early shift every morning at that time and wakes me up. I don’t have cancer as it was wind all along and they operated on me by mistake. The pain I feel now is due to all the drugs they give me. At the next Oncologist meeting on Friday they will tell me that they got it wrong, my notes were mixed up with someone else’s, that they are very sorry, stop all treatment and crack on with life oh and you can return to work one month from now just in time for Christmas and the drugs to be out of your system, claim forms for malpractice are on the table top on your way out. Now that’s what my dream state was tellling me, I liked it, loved it and thoughts of me skipping whooping running out of the hospital filled my mind. Reality then set in on around the second coffee and fag that it was just a dream just a mad mixed up dream but the ending of being cancer free and being able to live without a death sentance of a year hanging over my head was just too sweet not to play out in my fantasy mind.
Yesterday my day was just spent with my mom. I loved it and she loved it, the sun was shining and like all relationships we know each other so well, we love to plan, to get excited, to improve things to make things in our house just lovely for other loved ones. Now the fustration of illness and my ability to contribute to anything is so limited it upsets me too much. My mom gets breathless trying to complete daily chores, her hands starting to go club like in appearance as so happens with age. She worries about falling, driving and confidence falls away with each year. She loves being part of our lives and due to the ‘Judy Den’ bedroom make over she has stopped an extra night. She wants to extend this to help finish the room off but I have to say no to her as life has to have balance and everyone needs a break from me, a rest, a recharge of the batteries but she just wants to be with us however she does know we are right. She can return on Monday rested and ready for taking up her invaluable role in this shit journey we are on. Thank you all so much for your comments left for her on the blog as she does read them all and loves them.
Steve had his break from me yesterday by going into the office. He tells Liz that he is glad of the break, there is no shame in saying that as it’s true. Thank you Liz, Graham, Bryn, John and Jay as you all help so much in your support of Steve and he returned yesterday whilst tired but refreshed as we had little contact all day.
So the planned carpet fitting for ‘Judy Den’ happened at bloody 6.50 pm so we waited all day for this and I’m just glad it’s done. Excitement to see the new carpet I crawl upstairs to see. Sat on a stool in the room we start to plan tomorrows job list. I’ve been in pain again since the John Lewis trip out and Steve starts to get stressed at me for planning too much for tomorrow and orders me back downstairs to rest. I sit and cry with him when he joins me of my fustration of being a useless cripple around the house, that I’m sat downstairs whilst everyone is part of the making of Judy Den and I can’t help, lift anything, move anything, just useless. Mom joins us and they understand but still insist that I have to take the day slowly and rest and not do too much as it’s them that have to see me try to recover, in pain and upset. So I agree to behave today and take things easy.
Now when I got the letter to say I could have my M&S pension it made me very happy but also very sad. My doctor has confirmed that I have a shit prognosis of a year. It doesn’t matter whether you only have £2.50 in your bank balance or £2.5 million as no money, no fame, no title you hold, no allegiance to God will save you from dying. It will happen to us all but to be told it’s happening it is very different. I cry because I can spend it on the ones I love whilst I’m alive, happy picking daisies before the sand timer of my life slowly (I hope) runs through the timer like the ones in any game.
So today’s post being stages we need to talk about that and it’s the serious stuff that I alluded to following Nicky’s weekend visit. It started there but applies to all my loved ones and to us all as we all go through grief. Now the internet says that there are 5 stages of grief and they are:
The five stages, denial, anger, bargaining, depression and acceptance are a part of the framework that makes up our learning to live with the one we lost. They are tools to help us frame and identify what we may be feeling. But they are not stops on some linear timeline in grief.
Now you can be in any of those stages at anytime, it’s a roller coaster ride. Now Nicky is in anger mode when she is not with me, when like my mom she reads about my day and feels helpless. She can’t imagine her life without me in it. She reads the blog and comments, lovely words from you all and feels that she isn’t doing enough, not saying enough, not buying me enough thoughtful gifts, not expressing how she feels. So she gets anger. Normal stuff according to the internet, oh where would we be without it hey. I try to explain that it’s okay that she doesn’t text or that she doesn’t find the right words to say cos we have been friends for so long I know how much we love each other, she is considered family to me and has been for over 30 years. It’s the one precious thing of life, your life and it’s experiences shared with others. That’s my meaning of life. If your dream is to swim with a dolphin, great but done alone with no one to share the moment is lost and empty. That’s why I don’t want to swim with a dolphin or climb a mountain or run a Marathon cos I’m happy just sharing moments with my loved ones. Laughter when looking back on the old photos I shared yesterday brought back the ‘ Oh wow remember this day’ and you relive that time and place with each other and feel the memory, feel the laughter, feel the love and it’s that which will hold my loved ones together when I’m gone I hope, the good times, the happy precious moments shared. The love of life and living not being bitter, angry or a victim of cancer but strength from the love we all had for each other.
Getting too heavy for you all I think and wow 6.30 am, so I’ll just go for my next tablet, coffee, a fresh packet of fags and of course as a reward 1/2 a biscuit.
Steve worries that the changes or additions to the house when I’m gone will be source of pain for him and I worry about this too. Daisy Den is this massive project of love for me so that I can happy, the hot tub will be for Steve a reminder of my pain. I hope not I tell him as I’m planning fun times in there too with everyone. Now for years and years I have always insisted that ‘The Rose’ by Bett Milder is played at my funeral, I told my kids and mom of these wishes and I have been adamant about it and Steve has always hated the idea and hates the song coming on. I have written already what I want hymns etc at the funeral and our dear friend Ian will help Steve ensure all my wishes are followed. One thing we are going to do with the pension money is to pay for both our funeral plans so that the stress of ‘what would she want?’ is not an issue for anyone. So there will be no pop music, and no flowers apart from one family one. If anyone wants to buy flowers they should buy them for themselves and take pleasure in their beauty. I love daisies because of the ‘picking the moments’ thing. They are for me a flower that grows everywhere, they are free, you don’t have to have money to have them. You can see them in the grass everywhere in summertime, you can make chains of love with them, you see them wild and free spreading smiles for people like the buttercup, who hasn’t held a buttercup up to their chin and asked a friend ‘do I like butter’? Free precious moments of growing up, lazy summer days in fields with picnics surrounded by daises.
For anyone who doesn’t know the song which I have attached it. For me it means so much about life and I cry when I listen to it as it reminds me so much of the sad time when I lost my Dad. I used to play it full blast in the car and drive singing and crying at the pain and suffering he endured with his battle with Pancreatic cancer. Anyway that subject needs a whole post of it’s own. Please listen to each word and think of yourself, your life and I hope that it touches you as if I could send a message of pain, love, despair and then hope it’s all in this song to you all from me.
The wonderful Marina from Ian Rennie came for a home visit, she is so lovely. We discuss pain relief and how I am getting on. She is referring me to a pain specialist for a review as I have less than a week now on these new tablets and then they have to stop. What then as I can’t go back to the pain I was in. They will co-ordinate with the Oncologist team and together help me to be as comfortable as possible. This is a charity, it amazes me that they are driving this, where is the NHS care? This subject is a whole post on it’s own with my frustrations so I won’t go on about it now. Where would the NHS or I be without these wonderful people, thank you Marina.
So hot tub is being delivered tomorrow and I will film it going in via the crane so you can share the moment. Mom has had to go home and she is sad about this but agrees she needs a break and some quiet time. Mom and I met up with Mary and Ann from the BHS High Wycombe store for their lunch hour. It was so lovely to see them and talk shop, talk Christmas Shop going in. I hope that they weren’t too shocked at the state of me with my stick and cut lip. Then back home to prepare tea as BFF and Andrei are coming for tea, so loaded with pain killers Steve and I cook together whilst Rebecca takes Molly for her daily walk. I am so excited to see them and so I’ll post this up and take photos later and tomorrow’s post will be an update on the evening.
The sad thing about about tomorrow is that the famous Chemo Gazebo will come down to be replaced with the hot tub. It’s given me so much pleasure throughout the summer but it has to come down. £20 well spent.
And finally to make you laugh, Rebecca is on a diet and this morning whilst making her packed lunch the cucumber appears slightly ‘phallic’ so I took a photo just for fun. My poor daughter, the things I make her do for me hey!
Hope you all had a great day and catch up with you all tomorrow.
Okay so I left you for a pork Sunday lunch, yummy thanks mom. Now Steve is on the early shift at work going into the office, so he goes to bed at 11 pm and with everyone asleep I have time to reply and catch up with you all, my favourite game of ‘wack a comment’. I do this and just rest in my dream machine chair. After a few hours, well it was 2.20 am I decide that I have to get some sleep, oh why can’t I sleep? So I get changed and head to the dining room, with a slight smile of remembering the earlier scenes of flying breakfasts and smashed lips from that morning. I try to sleep but due to the pain in my back I give up at 2.50 am and I head back to the kitchen to get a fresh hot water bottle to ease the pain of laying flat as it’s just too painful. I then think ‘right you bastard’ I’ll have you, I’ll take 3 ml of oral morphine too just to take the edge off the pain and then I’ll sleep. So back to bed I go and sleep finally comes to me. Then blow me I wake at 4.30, why? why? why?
I give up trying to sleep and head to the kitchen back to my chair with the all important coffee, 1/2 biscuit and a fag and I’m sorted, ready to start today’s ramblings for you all. I thought I’d start early as who knows what accidents may happen in the day that may prevent me posting this up.
So before I continue with how the day actually went I need to share some changes that have happened in the house since I have had my dream machine chair. Tia the forever ungrateful rescued cat has got used to my early rising and no longer thinks it’s a reasonable hour to wake up for breakfast but instead she wanders in not asking for food but she does now think that my chair and my lap are there just for her. She comes and sits with me and we take on the look of ‘Blofeld’ from the Bond Movies as he only ever stroked the back of his cat’s head. We do this whilst she purrs away until out of the blue she just hisses at me and jumps off, why? why? why? Like my sleeping patterns will I ever understand her?
Molly never wakes up when I do to say hello or to demand food. Why don’t I have normal animals? When she does decide to eat she takes one biscuit at a time carries it to the back door mat and eats it and then returns again and again until she has finished. I’ve never known a less greedy dog! I think they all need specialist help, or I certainly do just to understand them.
No sightings on ‘Spike the Squirrel’ for you I am sorry to report, or is this just because I spend all my days in my dream machine with Steve in the kitchen with a restricted view of my garden and the bloody thieving ball snatching pest has been going unnoticed!
So back to today and first thing first is the usual drug list to follow before I can even eat. Tummy lining tablet first, which you can’t have food with but 1/2 biscuit is fine I think haha. I go for a 1/4 of a biscuit this time as I’ve already had half and gosh before you know it, I’ll have eaten a whole one, oh the decadence of my life hey.
So whilst I’m waiting for an hour before I start taking the slow release morphine tablets I have time to share the ‘then’ part of the post.
My 18th Birthday start of the pub crawl evening photo
So, Nicky brought with her some old photos that I’d never seen and ones I do remember this weekend. One of my favourite ones was taken outside Lynne’s house in Stallings Lane (for all you Kingswinford followers) It was my 18th Birthday and a pub crawl was planned through Kingswinford and ending up in Wall Heath. We all do these silly nights out when growing up and I like others are sometimes thankful there was no Facebook to record all our wild times as OMG we certainly had lots. Anyway Nicky was working so we Lynne, Lisa and I went to the fancy dress hire shop and chose the outfits. I’m Andy Pandy, covered up, very sensible, Lynne is Prince Charming, very glamorous, Lisa is Donald Duck for comedy value and my poor poor poor dear friend Nicky was ‘Bondage Girl’ we agreed to tell her it was the only thing that would fit her and that was all that they had left in the shop. Poor Nicky, just look how happy she is to spend the night getting bladdered in front of all our friends dressed as a Bondage Girl, this is so not her at all but she did it for me, for my birthday as that’s what friends do and I only told her on our recent holiday that it was a lie and we chose it just for the laugh. Now that’s not a nice thing for us all to do, but I’m not sorry as I have the memories of that night and my best mate doing her very best to look the part for me and hating every moment.
The next photo Nicky isn’t in it but probably took it and I’ve included it as that’s where we met at McDonalds Merry Hill (or Merry Hell, as I like to call it) It was a drive through, that was wow at the time, very modern and new. The day was for the actual Ronald McDonald visit to us. We all dressed up and had a great day. Ronald McDonald in those days was actually an actor. Now the day went really well but I do have a confession to make about that day. We were coming up to our 40,000th customer or some number like that and the prize was if you were that customer you got a free meal and your photo in the local press. Now I was in charge of counting who that was. Now standing ready to pounce some dodgy looking customers came in and although the number had arrived and they were the winners I waited until a nice looking family came through the door and pounced on them. So sorry but confession done now after all those years of denying someone a prize they deserved just because I decided they didn’t look right, oh the shame! So don’t tell anyone hey, our secret.
The third one I’m putting up is just because I like it. We were early/mid (more mid if I’m honest) 20’s I had got Rebecca & Richard. Nicky if you look closely has yoghurt on her legs as she burnt them and we covered her legs in natural yoghurt to ease the pain. An old Greek tip for sunburn but she looked so stunning carrying the dried up yoghurt on the legs look, sorry Nicky I should have just given you after sun but yoghurt just looks so good dried on and flaky, very sexy
Oh 7 am tablet time, so back in a minute.
Our day went really well and apart from trip to John Lewis where I was stubborn and tried to walk with my stick and ended in pain all afternoon it’s going well. I brought mom a light for her new room and only picked up the wrong finish so poor mom had to return to change it on her own as I couldn’t face the driving again. Now the letter came this morning to says that I can cash in my M&S pension, great news as I can pay mom back for Daisy Den, Hot Tub will be in by the weekend and by the time all that’s done it’s almost gone, so no begging letters to me but the ‘Bank of Mom’ will be back open for business So pleased that I can pay her back quickly for Daisy Den.
So it’s now 5 pm and we are still waiting for the carpet to arrive, we are obviously the last job of the day so I’m signing off as any minute now they will be here and it will be all steam ahead to make my mom’s room a haven of peace for her to relax in.
Hope you all had a great Monday as all in all I haven’t impaled myself on anything, no other accidents and courtesy of Keith, Nicky’s husband we have fresh trout for tea, life sometimes is really good and today has been a really good day here. Catch you all tomorrow xxx
Well what a lovely evening we all had as a family with Nicky and Beth. We had I’m told delicious Moroccan Lamb, cos I couldn’t taste it but I did taste the lemon Cheesecake yummy. We then had coffee and chilled looking at old photos which I haven’t seen for years as Nicky and I became best friends at the age of 17, that’s a staggering 31 years of friendship. I shall share some old photos with you all later in the week as they are so funny.
We then played a music quiz which we have been talking about playing for ages and we finally got around to it. Steve won as normal, Nicky and Beth, Mom and Rebecca and you guessed it I’m last again but I blame chemo brain and get away with it Julie had brought us the game ‘Would I lie to you’ a really good game and we could have played this for longer but it was midnight so we will enjoy much more fun with this game at family get togethers, so thank you Julie.
Steve, Nicky and I sat up until 2 am chewing the fat as they say and then Steve left us girls to it. Now that conversation needs another post in itself and it’s too important to brush through so we will park it but it’s about the emotion of losing someone and the different stages we all go through. At 4 am I’m conscious that I have now been awake for over 24 hours so we agree, I’m having a last fag and then it’s bedtime, I get into bed at 4.11 am and guess what time I woke up? 5 bloody thirty! what the hell is all that about, I was dreaming of a sleep until at least 7 or maybe 8 am.
I start my day with usual list of painkillers and start retching, now for all of you out there who have had children you will understand that whilst retching, sometimes coughing or jumping can let out a little wee wee. So I’m retching cos I have no food to bring up and peeing myself at the same time, lovely and Nicky just laughs, I should have known then that my day was not going to be a smooth one and I think I should have just gone back to bed, hindsight,what a wonderful thing that is hey!
Everyone up and I decide that I’m cooking the ‘Full Monty’ for breakfast. Bacon, sausage, poached eggs, hash brown etc… All cooked and I decide unusually for me to have some. Everyone was in the dining room where my temporary bed is at the table ready to dig in. I come through the door towards the table trip on a cushion, throw my whole breakfast up in the air which lands all over Nicky whilst my head goes straight into the leg of the table. Silence and then gasps as I slide to all fours on the floor holding my face. My first thought was ‘Oh no please don’t say I’ve knocked my teeth out’ I have lost teeth anyway and you can’t have dental treatment whilst on chemo. I could feel the blood and the cut on my lip, I was also concerned that everyone was in shock ‘oh my God’ and ‘you have to let us see how bad it is’ I could hear them all but I didn’t want to face it. Turns out my teeth were intact and apart from a cut lip and inside cuts I’m fine but I have now spoilt everyone’s breakfast. I’m sat in my Dream Machine with a frozen bag of hash browns on my lip and everyone has suddenly gone off their food. Rebecca gets really upset and angry and kicks the bed, goes upstairs to calm down. Nicky picks off my breakfast from her clothes and eventually they all try to just get on with eating and enjoying breakfast.
Then as today we are doing my mom’s room up and I’m not allowed to paint or do anything. My mom is trying to stand on a stool to help Steve with a light, she falls off the stool does a backward roll and ends up with a hurt shoulder and back.
Steve then electrocutes himself putting the light up. Now I don’t know about you but today has been a difficult day for us. It has had laughs, tears and falls but because mom’s carpet is coming tomorrow and we needed to get the room painted we have all only just stopped working. Hence let’s talk about the serious stuff another day. I hope that you like me look at this post and go ‘oh bloody hell what a day’ as it reminds me that when all is said and done our minds are willing but our bodies are weak and sometimes we all think that we are spring chickens, that we can’t as we have always done, look at a job and go ‘I’ll do that in no time’ cos that’s how we all were. The £7.49 bargain light took hours a fall and an electrocution cos I can’t stand upright on a stool to help Steve. Reality check for us all I think.
So tomorrow we go back to finishing the room but with a new perspective of what’s achievable and we can all cope with. Age and disease is a terrible thing to come to terms with, that we are all not getting any younger. This does however remind me of a saying I love which is ‘If we weren’t getting older we’d be dead’ so that’s all okay then hey lol lol
Julia popped round to give me her £71.33 raised yesterday with the help of the High Sheriff at the International Day of the Girl which started in Wycombe in 2012. It was supported by the Police, Bucks County Council, Rape Crisis, NHS and Mind. Thank you all so much as every penny counts. Talking of pennies the lovely Mr Grumpy Bum has been very secrective about how much Uxbridge BHS has raised and he keeps teasing me that he will tell us all soon but come on Vaughan, have you beaten me or not? A thank you to Hilary and Ian who donated the other day and I forgot to mention it, sorry guys.
A massive thank you to our Angel, Rita who will be at mass as I type to attend mass armed with my prayer list. Thank you to everyone how prayers for me as I know this happens everywhere from many denominations, it’s appreciated xxx
I hope Peter Andre survived the Strictly Dance off as we are all covered in paint and plasters here lol All other topics will be covered I promise but for today I think chilling and roast pork is now the order of the day. Oh thrush is getting better too
This last cycle of chemo has not been the best for me. Like others going through chemo it’s a mixture of balancing the side effects. The other night I forgot to tell you that I was sat drinking a cup of coffee in my dream machine, when all of a sudden there was a warm sensation in my fanny, not unpleasant. I suddenly realised that I had nodded off and spilled the whole thing down me. Mom to the rescue again and with the chair scrubbed down and me changed into clean clothes again I remained in the chair for hours drifting in and out of a chemo sleep, which is not like normal sleep, it’s not restful.
The fatigue is just so hard as is the thrush in my throat. You want to do things, I make plans of what I want to achieve every day. The old Wendy would have thrown herself into the list and cracked on, driving Steve mad with my energy and pace, my drive to complete a task, whatever it was. Then on to daily life where I’m just not being able to walk anywhere, stuck in a wheelchair if I do go out, relying on a walking stick to ease the pain out of my back whilst standing. It’s all so removed from the person I was. I reflect so much on how I took all of this for granted. My health, being normal, being able to plan things, looking to the future of a life filled with my loved ones and planning events with them. Last night Steve and I worked out that if this chemo works and I stay on it then Christmas day will fall on my good chemo week. Can you imagine how excited we both were just the thought of being able to taste and enjoy a Christmas family dinner with all the trimmings that we enjoy so much in our house? But will it be my last I wonder with a heavy heart? Because if this chemo doesn’t work then we are in trouble and we have to consider that fact. For now though I am looking forward to turkey and trimmings my favourite day of the year. So Paulette I’m going to be your ‘Bean, the fighting machine’ and hope to have lots of Christmas days, as many as I can. This will not happen without going through chemo and just keep taking the drugs. No wonder 40% don’t complete chemo, but I will, I have to as without these drugs I think that I would not have survived this long.
When I go through these difficult days and my posts are short or I don’t thank people for sharing my posts it really upsets me. I often say how much it means to me that you all care so much but it really does help me. Yesterday I didn’t even look at my phone or computer for about 7 hours and when i did I had 61 emails of love pouring into my home and over 30 Facebook messages, wow. I’m so glad that I started my blog and reached out to the world. I remember talking about it with Emma at work about whether to do it or not. Where would I be without it I wonder now? I think I would be more alone, less connected and I would have definitely missed out on all the fun, friendship and love that it has been a platform for.
Now I as a mom can’t imagine what my mom is going through when she sees me going through these rough days. When your child is ill when they are young you are in control and you take the lead in their recovery. My mom bless her must be lost, I know I would be. Over the past two days I have spent some last hidden money on doing up my mom’s bedroom here at our house. She spends so much more time here now and I want her to feel comfortable and her bedroom a haven of peace through this madness of an illness. It’s been so hard to just go out and look at bed linen with her due to the fatigue etc. but I want to show my mom how much I care and appreciate her. Many of you mention her in your comments to me to pass on your love to her and she does read all my comments. So although she doesn’t do emotion I know she appreciates your support and thoughts. I can’t imagine losing a daughter so early on in life, my sister of course, then losing your mom, dad and then your husband, only to find out that your shit life hands you another bomb shell of terminal cancer for your only living relative. How many times did she, like me, like us all talk and dream of family times when as a young mom she looked into the future of grandchildren and a long happy life just sharing moments, family holidays and Christmases together. How cruel life can be sometimes, no wonder she doesn’t show emotion. Hence my need to make her feel welcome, happy and safe here when she comes to visit. I just hope that next week I get the M&S pension fund otherwise I’m completely broke and all my plans to make a difference to my life and my loved ones will be shattered. I sit here now since discovering the hot tub idea and dream that whenever I want to I could just go outside my back door and be weightless, pain free in no pain for just a short while and it keeps me going that I may have that one day.
Last night I slept for just over 2 hours but at least I slept in a bed. Steve let me off taking the laxative drugs as he knows how sore my mouth is, how much I hate swallowing them and how much I hate being sick. We discussed this weekend that we could try to sleep together again in a bed. Wow something that we both miss so much however with my 2 hour sleep pattern and my scabby mouth it is not an attractive thought as now even gentle kisses on the lips are even out of the question. I don’t want him to get thrush on any area of is body, not that that has been on the menu for a long time but I hope you get what I mean.
So the first part of this post was written at about 4 am. I have had a mixed day. The legend Julie Murphy came to see me and I’m sorry that I didn’t get a photo of her, she tried my wig on and like so many who see it she loves it too. She has brought us a family game which we will be playing tonight
Julie left at about 3 pm as Nicky and my beautiful Goddaughter came for the weekend. Now within about an hour of Julie going and Nicky coming the back pain kicks in and I’m in agony again and have to hit the oral morphine, poor Nicky and Beth having to see me in this state, it just upsets me so much as I want to enjoy being with them, sharing precious moments.
Pain eventually eases and I can join in again for the evening
A special thank you to Julia, a dear friend and the Chief inspector who have been fund raising today for other causes but slipped me in too and they have raised over £70, just wow as every penny counts.
I want to thank Andrei for his lovely message today and his donation. I cried all morning and on and off since, what a fanny I have become hey lol.
Good luck to Peter Andre tonight as he has my support through his sharing of our ‘Cancer Free’ video, bless you Mr Andre and we are all behind you.
And finally my prayer list for my angel Rita: Karen, Frankie and my loved ones so they please have some peace and happiness as normal. To anyone who has lost a child for whatever reason. To all carers out there that look after people everyday without complaint but inside suffer so much. I hope that’s not too long a list Rita.
I may not get round to answering any messages tonight due to Nicky and Beth being here but if awake at 3.30 as normal I will be replying then so turn your phones off as I don’t want to wake you all up xxx
So I had great plans for today but the trouble with life and plans is that they don’t seem to work out the way you want them to do they?
So last night Steve went up to bed at around 12.45 following a long trip to the Midlands to visit family. I stayed up to see him and to make sure he got home okay however I would have not have gone to bed anyway without knowing he was home.
Ian Morton a great dear family friend popped round to see me whilst Steve was out but with fatigue and chemo mouth I just wasn’t great company, sorry Ian. It was lovely to see him and just chat together but I always feel sad that I upset people that knew the fun lovely, energetic woman that I was and the mess I have turned into.
So with just two lots of drugs to take and everyone in bed I try to take the laxatives with is a drink, this just wouldn’t stay down and my mouth/face turned into a water fountain for a few minutes, trying to hold onto the liquid whilst my body wretched to reject it. Eventually after sitting for about half an hour I felt better and tried to take the tablets. This took 3 attempts as I kept being sick, now I haven’t been eating much due to chemo mouth and so it’s just bile again. So now I am stuck downstairs covered in sick, unable to get to fresh clothes as everyone is asleep upstairs and I am feeling pretty low as you can imagine.
I remove the sick clothes and sit again waiting for my stomach to calm down. I go to bed at a 2.15 am and I am hoping that I will now sleep until at least 5 am but no I’m up at 4 am, just 1 1/2 hours sleep. I decide to just throw myself into finishing the final stores’ project work as I have to wait to take drugs in the mornings and just have to put up with the pain until 6 am. All work completed and an email with the last 3 stores goes off to my boss around 6.30 am, he must have thought I’d worked all night.
The day starts and my mouth is just so sore all the time and swallowing is difficult. I go to clean my teeth for the second time and then remember the Ian Rennie nurses warning about thrush so after brushing I lift up my gum line to find a terrible covering of white thrush which I haven’t noticed at all as none of this is on the visible part of your mouth. No wonder I was in pain and that must be what is wrong with my throat too. I return down stairs to share my discovery, and mom and Steve both feel bad as we never clicked that it was that we all just thought it was chemo mouth as usual. Drugs have now started as Ian Rennie organised a prescription, bless them they are wonderful and so I’m hoping for that to get better soon.
I wanted to do the calendar reveal today but this will have to be next week now as final sponsor checks are being done. Apologias to you all. Steve has worked so hard on this and we are almost there I promise you and by next week you will be able to pre -order your very own exclusive copy, trust me they are good and worth £7 for the laugh, the info inside and the cheeky bums.
I have suffered with fatigue all day too and I just get so sad and fed up of feeling ill. I was trying to cook some soup earlier and I just had to put my head on Steve’s body and sob, just for a moment, it’s just despair and self pity as I want to feel well again. I look back at things I could do a month ago or two months ago and wonder why I can’t go back there? I wonder how much daily pain and suffering do I have to take. The truth is I have to take whatever I have too to fight this shit disease and to help reach out to others and stay with my loved ones for as long as I can.
Thanks Kim for my card and daisy gift which I received in a daisy card, so sweet the gifts I get, thank you all so much.
So not the day I wanted or planned and certainly not the day I had wanted my loved ones to see again. I am glad I could spare them the sickness but not you guys, you lot are special, you get it all ‘warts and all’ but unless I talk about what chemo is really like, how will others really know?
So happy Friday and I hope that you all have something wonderful planned for the weekend. I will try to post tomorrow for you all but a more interesting one would be nice hey? Something cheery so I’ll have a think for you all.
Last night, following a call from the Ian Rennie nurses with drugs advice, they had concerns about me sleeping in a chair in the kitchen all night. So mom set about making me up a bed in the dining room, to the levels of comfort that I enjoyed at the hotel at conference last week. So last night I had 3 hours sleep which is not too bad and I am going to continue to try to sleep in the bed downstairs on work nights and at weekends when Steve doesn’t have to go to bed on time for work maybe we could get back to sleeping together. A normal thing taken for granted every night for most couples but for us it would just be heaven as we both just miss cuddling.
So up at 4 am and sickness is bad this morning, there is nothing to bring up as I’m not eating too well but even retching on an empty stomach isn’t fun. So I reach for the anti sickness pills and try so hard to keep them down. The problem is that for the first few hours of the morning I don’t eat as stomach protectors are the first drugs to take, which have to be taken on an empty tummy. So you have to wait for food. I do have to reward myself with 1/2 biscuit after every tablet I take but Steve says this doesn’t count as breakfast.
This chemo treatment is easier to bear and I am glad I am off the old one. The side effects are less but chemo throat this time round is really not good. I can’t taste anything and everything is just slimy with no taste. My throat is on fire and I love to have some ice cream to cool it down, this helps and also provides the vital calories that I need. You forget that this stuff is poison and will have side effects like no other medicine you will ever take. But I will deal with them and things should start to get better soon and next week I should be okay.
It’s odd to think that just one week ago I had returned from the conference and I was about to head into a weekend of pain and misery. Not that for me this time round as I have had some great advice and care from the Ian Rennie nurses which seems to be working better for me. They also offered me a hospital bed again and this just always upsets me as for me it’s end of days equipment that I just don’t want it in my home to the moment, it just really upsets me to think about those days and what life maybe like.
Richard called me last night for chat, it’s always nice to get a call from your kids isn’t it all moms out there. We were talking about all the plans for the house and the changes we are going to get done at home to improve my quality of life. We can only do this if I can cash in my M&S pension and I have chased them, they say the forms look okay but they need a week and I should hear next Thursday. It amazes me that they need a week to look at two forms! One is from my Doctor to confirm I have less than a year to live and I also sent in a copy of the SF1500 form too, but I guess I will just have to be patient and wait. I will however be completely gutted if they say no as this would mean that the changes wouldn’t be possible but hey ‘it will be what it will be’. Richard said but what happens if you get better and are okay. Again I have to be honest with him as I am never going to reach retirement and it’s a hard conversation to have with your own kids.
So awake at 4 am and I start my project work for BHS early as I only have 3 stores left to do. I complete about 3 hours and work is a great distraction from pain but it’s hard going with concentrating for so long. The house starts to wake up, Rebecca, mom and then Steve. Tia the ungrateful rescued cat has also arrived for breakfast. I think the animals are just as confused with my sleeping patterns as I am but hey it’s chemo week and the first week is never great for sleeping.
Today we have planned something nice to do and that’s for my mom to take me around the local park with my wheelchair so that I can walk Molly. I haven’t been able to walk Molly now for weeks. about 8 weeks now and I miss walking her. We go to the local park , called the Rye. We are very lucky as it’s beautiful there. But again I feel so awful that I have to be pushed about. As soon as I am out of the house as walking any distance is just not possible at all it was lovely to see Molly run, normal people walking and talking, enjoying the sunshine. Mothers walking and pushing their babies in the park and there was my mom pushing me again after 47 years, pushing me around a park. You never do know what is coming do you, I hate being pushed and the lack of independence but glad of the picking daisies moments with her even if from a wheelchair.
Back home I sleep again in my chair tired from being out in the fresh air.
Now I am hoping for the big reveal tomorrow about the calendar, who made it in to the final edition (Steve’s project and I had little say in it) and where you can buy it from. We will try to do an order form from the blog page. We will do a Facebook page for it too to explain the background of the calendar for local and National Press. We are also going to enter it into the Charity Calendar of the year Awards competition, how cool is all that. The blog today will go over 70,000 hits in just three months due to the daily shares that I get from you lovely lots so thank you so much for helping me reach people.
I must be on a roll for winning at the moment as yesterday I had an email to say that the raffle tickets that I had purchased to support the poor girl Hannah who was diagnosed incorrectly by her doctor and was treated for IBS and not bowel cancer and who sadly only lasted 8 months due to this. Well I won a prize of £50 in M&S vouchers so I’m pleased with this and I hope that the ball that her family put on to help raise vital funds for Beating Bowel Cancer was a success.
So a short post today, sorry as I am tired and no photo’s either but I know that you lot won’t mind a short post from me for just once. Glad you all like my school day stories from yesterday and once I am completely back on my feet I will be back to my old self and longer posts, I promise.
Now yesterday I ended the day’s post with a Happy Birthday message to Jack my cousin Nicky’s son. It got me thinking about time and special memories. So this time last year as both Jack and Richard are in the army they were by some stroke of luck together in Africa on a games lodge, blown away by the wildlife there. Elephants at the watering hole which they looked out onto from their lodge. Two young lads who played together as kids, grew up together, connected by strong family ties were together from different regiments but able to share Happy Birthday with each other, what are the chances of that hey? So special.
What was I doing last year? Well we were all getting ready to fund raise for the Royal British Legion and abseil off Guildford Cathedral. I was worried about climbing the 280 stairs and launching myself off the top. We were determined at work to raise more than we did the previous year which was just over £1000. 2015 we raised over £4000. Peter Wakeham, from the Royal British Legion who has become a dear friend helped us organise event days prior to Poppy Day with a jeep outside the store, face painting for kids, done by Rebecca and he provided us with Royal British Legion merchandise to sell too. Emma, the team and I had a great time at Guildford Cathedral and I am so glad that I did it. As a store team we were top of the company for funding last year from the Royal British Legion and we were so so proud. Now this year I am so equally proud that HRH is taking my place and doing the abseil for me. I really do appreciate her doing this as I know that they wouldn’t let me do it in my condition, Thank you so much Janine (HRH) and I will sponsor you this year Rebecca is also doing it too, as is Linda from BHS Kingston, this is a massive thing for Linda to do. Just leaving the store for the day is massive let alone the abseil off the Cathedral.
So then I started thinking about school and how I had promised stories about my fun times there and I decided to share with you one of my favourites, my last day at The Crestwood School. Now everything that I write in my blog is the truth, all of it so although this story may sound like a pre thought out joke, it is as always the honest truth. Just so that that statement makes sense I must explain the the hierarchy at the school for girls. If you were in trouble depending on your year it was Miss Woodhall first, then Mrs Smith and then Mrs Vickers! If you got to her you were in trouble, guess where I ended up? okay so here we go……
Last day was planned as ever to be spent at my house during the lunch break however unlike normal lunch breaks it would contain alcohol and lots of it. When at school we do some daft things hey but getting pissed in under an hour was ambitious to say the least. A large gang gathered, we had been planning it for weeks and wanted to just have a laugh.
I remember being in my kitchen with Michelle Cooper who had decided to assist in me getting pissed and poured me a very large Rum and black, with not much black in it at all. I downed the drink quickly as we were limited for time to get back to school. All full of alcohol we had to return for last lessons, which for me was Home Economics. As we left my house, Dunc my boyfriend at the time had his motorbike out side. I decided that I would return to school in style and ride pillion, without any protection, helmet etc just care free I pulled up my uniform skirt to jump on board but I didn’t expect to hurt my leg/knee on the hot exhaust though, however with the rum inside me I couldn’t feel it.
All pissed school friends back in school, I remember looking down at my blouse and it had come undone. I hide in the cloakroom opposite the offices and tried to do up the buttons but I was having trouble. It suddenly dawned on me that I was pissed and still had to get through the end of the school day. I did the best I could to look decent and walked through the long corridors to the Home Economics classroom where previous shameful creations had been created in their, like green bread and pineapple outside down cakes most were disasters. I can’t even remember what we were supposed to be doing that day. Probably nothing as everyone was on a wind down.
The classroom only had high stools in there and I was perched on one. The door opened and Mrs Woodhall came in, she marched straight up to me and said “where were you at lunchtime” my house I replied “and what were you doing?” now the only thing I could remember was my leg so I lifted my skirt above my knee and said “I hurt my knee” I think I was going for the sympathy vote. She said nothing to that and marched back out.
About 15 minutes later Mrs Smith walked into the classroom and said “where were you at lunchtime” my house I replied “and what were you doing?” again all I could think of was my leg and the sympathy vote, so I replied as I had to Miss Woodhall that I had hurt my knee. Mrs Smith said nothing and walked out again.
Again about 15 minutes later Mrs Vickers came into the classroom and said “where were you at lunchtime” my house I replied “and what were you doing?” Now this time as the rum had really taken hold of me as I went to show her my leg I fell off the high stool backwards landing in a big heap on the floor. “Get her to medical” was all I could hear. As I was helped down the corridor to the medical room I thought lovely I will just lie down and sleep it off. But as the doors opened I was greeted with a room full of pissed friends who had been to my house at lunch time. I thought this was hilarious and shouted ‘Yeah’! and we all fell about giggling in pleasure as I was with my mates again.
I was told I was a disgrace to the school in getting so many people drunk and that all our mothers would be called to come to collect us from school. My mom was contacted but she said she wasn’t coming to collect me, so Sandra O’nions a good friend and 6th former took me home. On passing the High Arces pub I spotted Dunc’s motorbike outside and decided to pop in to say hello and discuss my afternoon of getting most of my year drunk. I had being going into this pub for years and forgot that I had my school uniform on, whoops my secret was out, under age drinker. They didn’t seem to mind.
I was told when I returned to school that they were very disappointed in me and that they had considered not letting me take my final exams, This was never going to happen but you believe them don’t you? I begged forgiveness and said that I had learnt my lesson and told them how sorry I was however I knew that I would never forget my last day at school and never would the teachers either.
So back to time and I think about next year, what will that look like I wonder? I have been told by friends to just take the days one at a time as to process time and the possibility of not being here in a year is just too much to think about. I do however have lots of precious memories of more drunken tales to share with you so don’t worry.
I’ve have just returned from the Sunrise ward where my chemo drugs bottle that I carry around with me has been disconnected. Greeted by warm smiles and ‘have you been to the loo?’ bless them all. Nurse Daisy had been trapped in the loo for a while and the maintenance men had to let her out. She loved the Daisies that I left for her and they have all read the post about Daisy’s pre – chemo chat and found it hilarious, it’s so Daisy if you knew her.
I can report that the wonderful bosses at Gatwick Airport via the big man himself, ‘Juddy’ are sending me a cheque for £250 after Juddy shared my story and blog with them. Thank you all so much as this is appreciated by me and the charity. Some people are just so lovely aren’t they?
I hope to bring you news soon on the Calendar front as it’s all going really well so far and we will be able to take your orders soon. Not too much longer to wait before you can start to cross another Christmas present off the long endless lists that we all start to work on from now until the big day, or is that just me? Well it used to be me.
And finally I like to post up the candle photo’s from Rita after her trip to Sunday mass and I haven’t done this. So here is Rita’s church and candles from my prayers list from last week. Thank you Rita as ever my angel.
So I left you all in the last post with me sobbing with Steve in the shower, I couldn’t write anymore after that the pain just got to me and I asked Steve to just put up what I had written so far that day so that there was some news from me at least but to tell you all that I wasn’t good and I couldn’t go on to write about what was happening to me and the despair I had entered. Let me explain why I got into this state first, my day yesterday and last night and finally the new plan of attack.
How did I get into an 18 hour uncontrollable pain spasm – Easy when you look back. Prior to having bowel cancer I had a lazy bowel and would go maybe a week without going to the loo and I wouldn’t bat an eye lid. Following surgery this wasn’t a problem as food just kinda passed through too quickly hence the phrase used often about having a ‘one minute warning’. 4 weeks ago I started to get bunged up and just prior to conference I started on laxatives as the increased slow lease morphine was making my very lazy bowel even worse. I went only about three times and then I agreed with Marina that I wouldn’t take laxatives whilst at conference because I didn’t want the worry or embarrassment of going whilst there. Not Marinas fault at all. She agreed but I was to start taking them again when I returned from conference. I didn’t do this until the Saturday where I took 4 and nothing moved. On the Sunday I took 6 and not even a fart, nothing moved. Now that’s about 10 days of food in me now and it’s not moving and the stronger the painkillers the more it slowed down my bowel. So this vicious circle had started but as the blockage grew it then pressed on the tumours in my gut which pressed onto the nerves and the acute pain started and just wouldn’t go away.
When I went into have chemo yesterday I was greeted by the receptionist who had read my blog and the post about nurse Daisy, called Chemo Preparation. She thought it was hilarious and I was glad that I made her smile. I was in pain but not complete agony. I was greeted on the ward to smiles and everyone was pleased to see me. Jan who was looking after me that day when she asked how I had been just hugged me as I cried telling her of my pain. I told her of my 18 hours of agony and showed her my swollen tummy. She arranged for a doctor to come and see me. Mary from BHS High Wycombe also offered to come in and sit with me whilst she was on a lunch break, thank you Mary but sometimes it’s just easier to get on with it on your own. As I was in pain but not acute like the day before but I don’t like people seeing me in pain. My only thankful thought is that at least for the BHS conference I was well and the pain was for those two days under control. Had conference been any of the last 3 days I would have missed everything. Paula from my Lib Dem family came in to see me as she was having tests at the hospital yesterday. I gave her some daisies for Dylan her son and the picture is of him as he loves the daisies I sent to him, bless him.
The doctor came and gave me a really good examination, he had access to my CT scan and recent MRI scan. He was confident that all was okay but we had got to get my bowels moving. As I had a prescription here at home for a suppository in case the Ian Rennie nurses needed to use it, it was agreed that I would return home and do that myself. If this didn’t work then I had to go back into hospital today for an X-ray and an enema. On the way home I was sprawled across the car seat unable to bend in the middle, the tumours are hurting in my neck too so I’ve got my head to one side and my groin tumours are unhappy also, so I am swearing. Mom is driving and snaps at me to stop swearing. Sometimes in life the ‘F’ word whilst not nice just is the right word to use. Sorry mom.
We return home and after 5 hours without a fag and being in pain, I had two coffee’s and double that in fags. Steve got the stuff together and read through the leaflet and explained what I had to do. I went to the upstairs bathroom with The suppository, KY jelly, music to play plus a fag and an ashtray as I had no idea how long all this was going to take to work. The worse of it is trying to actually find your bum as you don’t want to hit the wrong hole now do you lol. It’s not something that I have had to do for years. Since I was about 8 years old and then it was a horse shaped size pill that was not pleasant at all to put up your bum and mom used to have to help me. I have to say thankfully things have moved on and it was okay actually. So suppository inserted. I just have to wait. ‘Rod Stewart’s If you want my body and you think it’s sexy’ comes on and it makes me laugh as my lovely Aunty Shelia who gave me the CD said ‘how can anyone be sad listening to that song and she was right it made me smile. The suppository worked quickly, no cramps or fuss and all I am saying is that one flush was not enough. Job done I head back down stairs about 1/2 stone lighter lol.
Now this wasn’t the end of it as food was stuck in my upper bowel too as there was nowhere for it to go so back to the laxatives to push that through into the large bowel. So whilst I had some relief the pressure was still on the nerves via the tumours, hence the crying the never ending pain, the sobbing of despair, the fear of what end of day’s will be like, the fear of what is to come and the never ending pleas from me to get away from the pain. The more morphine I take the worse my bowels get and round we go again, the vicious circle. Last night I took 5 ml of oral morphine and it took the edge off the pain for about 1/2 an hour and then I am left in a zombie like state for a few hours as a trade off. I haven’t been eating properly for days now and mom is worried. Steve just tries to cope and Rebecca, my poor daughter like everyone else just had to cope with me in extreme pain and she, if she can, gets away from it all. I couldn’t even speak to Richard again last night as the pain gets so bad I can’t speak and I sob only with despair as I go for the next painkiller I can take, wishing time away by watching the clock on the kitchen wall tick by.
At 9 pm last night from 3 pm the day before the pain started to lift and I felt better. I slept okay last night and I have been okay all day now. I am always in pain in my back but it’s down to a dull roar, I can cope with that but agony for hours, I just can’t.
Ian Renie spent two hours with me today to go through my drugs and the past 3 days of pain. We have a new plan. I have to go everyday and if I don’t then it’s back to hourly laxatives and suppository’s for me, no problem there. I can’t stay on Dexi tablets that help but they will agree to a weeks course. I need to find my bowels level of help required to cope with the current drugs I take over the next week so that it is sustainable and keep the pressure off my tumours, then we will be looking to remove Dexi tablets to see if the pain gets worse again. They have also offered to refer me to a pain specialist if this doesn’t work. Suzanne came (the Irish one who takes her tea just like Rita, wave the bag at the water lol) she also had a student with her. They are such lovely people and I appreciated their time today, no rushing just genuine care, love and support.
On a plus note my CEA cancer markers in my blood are still holding low at just 3 which is a non smokers level and I have no problems with my blood count so chemo could go ahead yesterday, unlike poor Karen who has again had problems with her bloods but at least now we are both going to be on a good week/bad week at the same time.
I woke this morning and started being sick but nothing was in my tummy to bring up so I’ve had to take anti sickness tablets that again slow your bowel down so this won’t help but I hate being sick so I have taken them anyway. Again the nausea returned for tea and again tablets taken which will slow my bowel down. I have chemo throat where swallowing is hard and it’s this that makes me feel sick. I am however okay and just in background pain.
So finally for today I have to thank you all for your love and support from yesterday. Andrei for his donation to Beating Bowel Cancer and to Mary who has also given to Ian Rennie as we yesterday created a link for them on the website.
So I’m back and all is well again. I can’t thank you enough for your words of encouragement and advice. You all know it must be bad as not talking to you all gives me so much pleasure. As Mary Poppins pointed out to me, if you promise ‘warts and all’ that’s what you have to give to help others, to educate people and if all this just saves one other family going through this awful disease and it’s devastating effects on a family and loved ones it will have been worth it, whatever happens to me.
Happy Birthday to Jake, my cousin Nicky’s son, much love to you Jake from us all xxx
So yesterday’s post whilst written in the middle of the night was full of hope that we had cracked the pain relief and I was hopeful. I woke full of optimism and joy that I was going to have a pain free day and all the long weeks of suffering were coming to an end.
Awake and the usual routine of 1/2 biscuit, coffee, fag, and animals fed I start to write. Rebecca wakes but not as early as usual and she is off as she is going to her dad’s today to visit him. Rebecca gets her breakfast and then gets ready to go off for the day. Alone I wait for Steve to wake but he isn’t an early riser and following yesterday where no jobs were achieved he knows that I will be anxious to get them done today if I feel okay and the battle will commence of trying to control me.
So with my pain down to just a very dull roar I start the housework. I empty the dishwasher, clean down all the surfaces put things that we have just left out away and then sweep all the floors through from the front doors. I normally can’t do the dishwasher as I can’t lift heavy things and everything I normally do just makes me breathless so it’s wonderful to fly through the daily chores.
I rest again until Steve wakes up. Rebecca says her goodbyes to Steve and I run her round to the front of the station as platform 3 which is a short walk from our house is always shut on a Monday. I drive with ease in my PJ’s and it’s lovely. I return home to supply Steve with enough coffee to wake him up.
Coffee supplied to Steve and we plan the day. Steve knows we need to work on the calendar so it’s agreed that Steve works on that in the morning. We need to have the calendar finished today so that it can be emailed to our potential sponsors. We need to go to print as soon as we can as we are running behind already, we need to get the product out there before the general public start christmas shopping, well the organised early birds anyway. We need to advertise ours and get the word out there that it’s available. Steve starts to work on it and I make breakfast and then support him by providing the written work required so that it can just be cut and pasted into the calendar and I roughly design the front and back cover. Before we know it it’s 12.45 and mom is due at 13.15 so we quickly get dressed and I was just about to text her to see if she wants a lift when she walks through the door. Molly Moo is ecstactic to she her after being away for just over a week, so we all have to wait to say hello until she has calmed down enough. Hello’s finally said but Molly continues to race round, bringing toys to show her nan and running around with sheer joy, gotta love her.
We sit and catch up on all the gossip over a coffee and fill mom in with the planned hot tub and other changes we intend to make if we can cash in my M&S pension. We have spend it 3 times over and more in at least 20 ways as the priorities change every time and I will just be so gutted if it’s a no from them. We can’t see why they would say no as we has supplied all the information they said they needed plus a copy of the DS1500 form which both confirm a shortened prognosis of under a year left to live. A sobering thought that hey to start the day with, sorry.
We agree to stop working at the computer and Steve mows the grass as part of his break, he hates this job but he knows if he doesn’t do it I will and he won’t let that happen as he doesn’t want me broken again like yesterday. I stand showing mom how mobile I was and she is impressed and like us optimistic that we have all cracked the pain relief. 2pm and drugs miracle Dexi drugs needed to be taken as as the last dose has to be taken early so as they don’t disrupt your sleep – really lol I suppose the 2 hours could be shortened to one. Lunch and drugs taken we return to working on the calendar.
I am so excited to get it finished, to see the final product. I’m so proud of Steve and what he is producing and the dedication of his labour of love to support me and help raise money towards this great charity. Work continues and I feel the pain starting to rise again, I know the drill now with my pain and I fear for the worst. At 3 pm I take ibuprofen, at 4 pm I taken Gabapentin, at 6 pm I take 2 paracetamols, at 7 pm I take slow release morphine, at 8 pm I take 2.5ml of oral mophine, at 8.30 i taken another 2.5 ml of morphine, 9 pm I take ibuprofen and even after that lot as well as laxatives I am still in pain and nothing I take will even take the edge off it. The oral morphine takes it off slightly for about 1/2 an hour but only when I take the second dose. I struggle to breath through the pain as it takes my breath away. It’s now 9.30 and after a few teary breakdowns as I just can’t stand the pain again with no release hour after hour I decide that I need a shower and to get into my PJ’s. I need Steve to help me, so I go on ahead as I struggle with all movement now and getting up the stairs will be on all fours.
Upstairs and ready I shout down to Steve that I will leave the door open for him. Shower and stool in position I get into the shower and just sit there and sob, and sob and sob I’m hoping that a good cry before Steve comes up will get it all out of my system and that the water will ensure that Steve doesn’t see the tears and the depth of my despair.
Steve joins me too early and I can’t hold back the tears, ‘don’t cry alone’ he says. He tries his best to be positive for me, he talks about my recent good days at conference and the plans we have to help my pain, he stays really focused on every good moment and the things we have plans for too like the calendar and I listen through my sobbing, he talks about things geting better and it’s at this point that I say ‘Steve it’s stage four cancer, is this what my days are going to be filled with at the end? Endless pain and suffering, uncontrollable pain day after day. I have already endured months of it and I’m so sick of being ill, constant conversations all day long about my pain, getting release from it and my only comfort is that I wasn’t like this for the two days at conference. However I never walked anywhere really at all. Steve says that that maybe the answer, less walking. What so I sit in a chair all day not moving for fear of the pain starting, great hey! I just miss being normal I say through sobbing and Steve finally is quiet and he just holds me and lets me sob again in silence. The only noise is the water from the shower flowing over us, me on my stool and Steve with his arm around me trying to comfort me the best anyone can with just one arm.
We return downstairs eventually and I try to paint on my brave face, we watch our recording of ‘Strictly Come Dancing’ to ensure Peter Andre gets through. I continue to take laxatives every hour and I take 6 but still nothing moves and the pain continues. Mom goes to bed around 11 pm and Steve as he is on earlies has to also go to bed. Faced with the night alone and in pain I take all of my last drugs and try to sleep, at’s 12.20 and I wake at 1.30, I try to go back to sleep and again I wake at 3 pm and I give up and start today’s post.
Steve here. Wendy is in too much pain to finish this post, so she asked me to add a paragraph at the end. She is sorry not to have answered your messages today. She hopes to update you all tomorrow. An Ian Rennie nurse will be visiting her in the morning.