Mine's Broken

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.

Sorry again for the short post xx

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.

So back to Friday, just after the phone call where I left you all yesterday.

Before all that happened on the Friday morning I, in my dream machine as I sat and ran my fingers through my hair, just like any other morning but today, hair and lots of it came away in my hands, I don’t know why I haven’t mentioned this before now. Well I do really, firstly was it just a one off? and not hair loss (denial) or was it just going to slightly thin and I could get away with no one noticing and again denial I think. I’m on double dose morphine so I believe that soon the pain will magically disappear and I will be normal again, I just have to get through the zombie stage that morphine also brings where fatigue is so bad that you struggle to even lift your own eye lids up to look at people.

Anyway around 10.30 I spoke to Emma from Kingston as I wanted her to send to me the previous list of money saving ideas that we all, as a management team had collated as there is no point in try to reinvent the wheel is there?. We thought we had come up with some great ideas before and Kingston’s Troy (Operations Manager) had been invited to attend Head Office along with other stores due to some of those ideas being deemed as good ones and HO wanted to recognise the effort that had been put into this list. Whilst I was on the phone to Emma the house phone rang and it was Michelle an Ian Rennie nurse who wanted to check I was okay and to say that she was the nurse for the weekend should we need anything. Steve spoke to her for some time whilst telling me to get off the phone. As I finally came off the phone at the same time Steve and Michelle had given up on me and she had hung up too. Oh well I thought it’s okay as I can call them anytime and Marina has set me up for the weekend with all the drugs I need. I fall sleep again until 1 pm.

Mary arrived at about 1.30 pm with the Beating Bowel Cancer buckets and badges, plus flowers for me, thank you Mary. We chatted over coffee but all too soon it was time to leave for the hospital as my blood tests had to be taken ahead of chemo on Monday and I have to be there for 3 pm. We offered to drop Mary into town as we were going to the hospital. Mary decides to come with me to get my bloods done before she goes as it should have been quick and it would be lovely to have the company. I get out of the car and only use my stick as it’s a very short walk to the lifts and then to level 5 and the Sunrise Ward. Steve has been sent on yet another drug run to the chemist for KY jelly and more laxatives.

When I first started going there I used to check in at reception and just go to the bay I was in for that day. Now when I go in I’m greeted by smiles, as I walk into bay 1, nurses wave and say hello as I walk through and as I enter bay 1 I’m greeted by ‘hello Sex Kitten’ lol now this the first time and I already have a Sex Kitten pseudonym so I can’t adopt that one for me too. We exchange a few giggles and I sit and wait. Mary and I continue chatting. Blood extraction started I wave hello to Nurse Daisy with my walking stick which is now covered in daisies, she thinks that I have done this because of her and I haven’t the heart to say otherwise. I swear it was Mary not me that mentioned my blog however I will admit to taking over talking about it and that they are all in it. I refer to the pre chemo chat post with Daisy where all answers to any problems with chemo end with her saying in her accent ‘if you get temperature, you go A&E’ they are all laughing now and using the computer and their iPhones to log into the blog. I even have to write down the blog web address too for them as they all plan to read it over the weekend. So I tell them to download the book as it’s easier to follow. Now they are impressed, so I tell them about the Cancer Free song and ’50 shades of chemo’ now they all think this is wonderful and I spend so long talking about my blog that I suddenly remember Steve and hope that he hasn’t been kept waiting. I say we have to go and we leave them all in a very happy Friday mood cos they are in my book and their ward is in a video and they are in my blog. Job done I think as they maybe able to spread the blog to other patients or fellow nurses, plus they really laugh when they know ‘wiggy woman’ is in it too. Now I’m happy as well. Mary and I leave the Sunrise Ward laughing too.

On the way down to the car park I call Steve but he has been stuck in traffic so that’s all good then and as he needs to get something from Staples which is just right next door to the hospital and I’m feeling okay we agree to meet there. Mary joins me too and leaves when Steve arrives. Now it really is only a short walk but I regret doing it as the pain starts again. We return home and I hit the extra painkillers. At 7 pm I continued as planned with the extra morphine dose hoping that this will work. I have another problem too which is that although agreed with Ian Rennie nurses that during conference I wouldn’t take laxatives it’s now been 4 days with no movement and my tummy is starting to swell, as too are the tumours in my neck and extra ones have started to come up at the front of my neck, plus the hair loss, nice hey?

The plan now is to hope to cope with the extra morphine and that it works and I have to start taking laxatives. The prescription collected by Steve makes us both laugh as I now have 100 sachets of Laxatives and 5 tubes of KY jelly, now that’s a lotta lube for anyone. Friday night was spent cancelling my plans to travel to the Midlands as I know that I would be in real trouble if I tried to go. I took 4 sachets of laxatives and nothing happened. The discomfort continued and although I had another broken sleep all night I used the time to write yesterday’s post.

Saturday morning came and I feel a little bit better, I even cooked breakfast which whilst using the surfaces to hang onto I can manage. Steve suggests that as he would like to get out of the house for an hour, would I like to join him on a visit to a garage and then an aquatic shop near by and then return home. What could possibly go wrong hey so I agreed and got changed. I decided that I would like to drive and off we set, the pain starts in my neck where the extra tumours have popped up, my leg aches from the tumours in my leg where I use my accelerator and my back is in it’s normal pain. It’s not long before I pull over and Steve takes over. I will not put other car drivers’ lives at risk at all. At the garage I walk a very short distance with my stick and the pain continues. We go to the aquatic center and Steve tells me to wait in the car and not to even bother coming in. I haven’t ever told you about our fish have I, well that’s because although I feed them every morning as part of my routine and I look at them everyday as they swim there’s not much exciting writing material there so they never made the blog before. So before you think oh no a boring fish story is coming, I will spare you that pain apart from the knowledge that when we brought  a school of 5 neons they were of course called ‘Take That’ and then when the real band split up two died and now there is only three but like the real band they are still going lol.

I sit in the car and I want to cry, where’s the extra pain relief from this morphine, why am I still in pain and weak in my back? It doesn’t make sense to me. As we travel back home we see a garden centre selling hot tubs, we stop as I want to look at them. The thought of having possible pain relief instantly in my home overrides the pain, if I had one of them like at conference it would be a way of having instant relief and bugger me it’s sale time :-). I struggle but determined to see them, to cost them out. Full details collected and as painful as it was it was worth it to see them but now I just want to get home to my chair and take extra drugs, to take all this bloody pain away. I had two great days without extra morphine at conference so why am I in so much pain today?

Back home in my chair I take extra drugs, I am back to my hot water bottle from Linda and I’m low cos the pain instead of just being in my back is down the right leg and in my neck too, plus I have to take bloody laxatives and talk poo throughout the day. Marina said on Friday if I don’t go over the weekend she will turn up Monday morning wearing industrial rubber gloves and she hopes that this will frighten the ‘shit’ out of me, lol very funny but I hope so too.

Steve suggests I phone Michelle, ‘will you phone her’ I say I just can’t face talking to anyone as I know I will cry, so I leave it to him and just lie there in pain and starting to look 6 months pregnant as my belly swells. Steve leaves a message for her to phone him and we wait. It’s not long before she calls back and Steve tells her our story and goes through all the drugs again and that the Ibuprofen 600mg tablets seem to work best and that the only other time the pain goes away is when I’m on chemo.

The LIGHT BULB moment – so then Michelle says ‘hold on that wouldn’t be the chemo, does she take Dexamethasone?’ Yes he says whilst she is on chemo only and just for the first 3 days, the 3 days where the pain goes away to a dull roar and I just have to cope with the side effects. OMG that’s the answer right there its the Dexi tablets (shall we call them as that’s too long to type every time). It’s the Dexi tablets that work for me, that takes the pain away not the chemo and guess what I have them here at home in my drug cupboard, I’ve always had them here, the answer just sitting there all along, for ‘fecks sake’ as Rita would say. Michelle tells Steve not to let me take any as it’s 3.15 and they interfere with sleep patterns, that she will call the doctor and confirm if it’s safe to take them from tomorrow, she hangs up and Steve and I sit together awaiting her call.

Now you can just imagine it can’t you, us sat in silence staring at the drugs that will take my pain down to a dull roar and then looking at the phone waiting for it to ring. Shall we or not take them it’s only just after 3 pm and my sleep pattern is not good away so where’s the problem? Steve breaks the silence to say that he knows what he would do, he would take them and just not tell them, what harm could they do, I’ve taken them before without any reaction.  I say ‘no wait for the call from Michelle.’ Waiting continues as I stare at the box, the answer to pain for a few hours just sitting there right in front of me. At 3.24 pm I give in and take two. Then the phone rings and Michelle confirms that a prescription is waiting for Steve to pick up at the walk in centre at Wycombe Hospital but he has to go get them now as a doctor is waiting for him. Steve leaves immediately. He doesn’t tell her that I have been naughty and taken two Dexi tablets. What would you have all done I wonder?

Whilst he is out getting the drugs Michelle calls to see if I am okay. I can’t lie, I’ve never been good at it apart from when I was really young and so I tell her I have taken two Dexi, she says she doesn’t blame me. She is shocked when she hears that I sleep on a chair in the kitchen and that I only get 2-3 hours sleep a day. She offers me a hospital style bed for my home. No, no, and no that’s end of days stuff for me just having that stuff in my home fills me with fear, no thank you and I’m grateful but no. Michelle understands and says that they will get my pain sorted and they now have just one week to figure it out as you can’t take it long term whilst on chemo as it also lowers your immune system but they will find the answer and I take comfort in their determination to help me, thank you Michelle.

Before the hour is up the pain has eased to a dull manageable roar at last. Steve returns with the drugs and we have enough for one week as you can’t take them long term. The evening comes and although cancer pain is better now the pain from not going for 5 days is not good. I continue to take laxatives and at last something moves, it’s not an impressive amount but at least Marina will only be turning up for a chat and a cup of coffee and there will be no industrial size gloves in sight. I return to Steve to tell him the good news but my poo is a shade of pale yellow. so I look this up on the internet and read out the possible causes, we fall about laughing as it starts with ‘this maybe a sign that you are unwell’ It just really made me laugh, ‘bugger me Steve I may be unwell’ I say laughing! Anyway I hate talking about poo as you know but on a serious note if you have pale poo it means that it’s been in you body for too long, go see your doctor please.

The evening continues in this vein, me taking laxatives and in constipation pain and discomfort, my belly swells and swells, this must be putting pressure on the tumours which put pressure on my nerves and with the Dexi tablets now worn off I’m back in pain. Rebecca is out for the evening at an engagement party, we have the house to ourselves, we should be having a romantic, sexy time together without any interruptions and yet again it’s been spoilt by my illness. This makes me sad. Steve eventually goes to bed, the highlight of his romantic evening is watching Dr Who and knowing that I have finally been to the loo and talking poo colours, my poor poor Steve, my Mr Wonderful.

Steve asleep and Rebecca returns just before 2 am from the engagement party. Once I know that she is home safe I can rest and at 2.30 am I sleep until 5.30, and I laugh as I wake as 3 hours is now normal for me and I don’t regret being a rebel in taking the tablets at all now.

Sunday – so the new pain control plan is to reduce the morphine back to just  a single dose twice a day, to increase the Gadapentin and to introduce Dexi in the morning and at lunch time 🙂

This post is now way too long for you all so I will leave you to get on with your Sunday rest but finally before I go I will leave you with happy thoughts.

Did you see Peter Andre last night and support him? I did, what a mover he is. Come on Peter, let’s win this hey!

Yesterday I got this text from Mary from BHS High Wycombe

I forgot to tell you a lovely lady came in to work today to find out how the fund raising went last Saturday. When I told her we raised just over £600 she was so pleased she told me last week that her mum had died a few years ago and she hadn’t seen anyone collecting for bowel cancer until she came in to our store then again in the Eden. Just wanted to share this with you. XXX

Now how lovely is that? We have made someone know that we care about the sufferers of bowel cancer 🙂

I also received this message:

Really glad you had such a good time at conference and what wonderful people your BHS friends are. Buy BHS is my new motto. Xxxxxxx

So Mr Bottom if you read this post you will know that my readers are supporting us both in terms of recovery 🙂

And finally following the successful tweet from Sean Fletcher I have asked him to retweet the Cancer Free song, so we will see how that goes, well I think I tweeted him as you know how bad I am on tweeter hey!

Enjoy Sunday, pick daisies and balance that emotional bucket is what I say 🙂 love to you all xx

 

 

 

 

 

It’s just after 6 am when I wake as so I head straight for the kettle as I know Rita is stirring and of course for my normal 1/2 a biscuit. Now on the way to conference when Steve and I stopped at the services we brought emergency biscuits from M&S and they were lovely. The only thing missing from my normal morning routine is Tia, the ungrateful rescued cat, Molly however she doesn’t normally come to say hello until about 8 am (lazy dog) and my all important fag but sometimes you can’t have everything in life can you but I’ll be with them all again soon. Rita wakes and we are both excited that I have slept for so long. Morning drinks done we start to get packed and then dressed as we have arranged to meet everyone for breakfast at 9 am with the view that we would be on the road for about 9.30.

Our hotel room is full of my presents, our bags and with my wheelchair on top of all of that it’s like an assault course in itself just to move around the room. I look at my gifts and feel so lucky, avoiding eye contact with the rug of course with it’s pretty ribbons holding it together as it will start me off crying again. My joy of the last two days is not about gifts it’s about the joy of being there with everyone and sharing precious moments. I think to myself that I have received enough love, support and encouragement to continue what I’m doing to last me until we all meet again at the next conference and I use this when saying goodbye to people later on as it really does express how loved everyone has made me feel. My emotional bucket is getting full and I need to give something back by continuing my work on spreading awareness, writing my blog, doing my BHS project work and being the best I can be for my loved ones both friends and family 🙂

Shall I explain what an emotional bucket is? Okay then for those who don’t know. If you consider your emotions and well being as a bucket. You have to have a balance between giving and receiving to keep the bucket levels balanced. If you give, give give always doing for others, wearing yourself out, working too hard then your bucket becomes empty and so does your heart. You feel low and depressed. If you take, take, take from others and give nothing back then your bucket becomes too full, it can  over flow and you become selfish, arrogant, and take people for granted. Your bucket becomes too heavy to carry around and so you will eventually be very lonely as people turn away from you. The perfect bucket, like life, is a balance of give and take.

In the hotel breakfast room I’m hoping to see the lady who I spoke too on my first morning to thank her for the extra duvets, pillows and blanket but she isn’t there and also to see James to say thank you to him again. I didn’t see the lady but I did see James. I try to thank him again for all that he had done for me in ensuring that I could attend conference but he just keeps smiling saying it’s fine and was a pleasure to do everything for me. Bless him, thank you James.

During breakfast as normal after the night before we try to find out the gossip but nobody has any. Everyone has behaved themselves and even BFF looks good on only a few hours sleep. Breakfast done Rita organises every available pair of hands to help carry my bags and presents out to Mr Grey’s car whilst all I have to do is after a quick fag outside sit in my chair and say my goodbyes to everyone.

As I pass through the seating area of reception I spot Janet from Hanley. I call out ‘keep her away from me’ this is just a joke but every time I see her I cry. She has promised to come down on the train soon to see me at home, bless her. She instantly comes to me and hugs me. She whispers in my ear ‘if I hug you tight enough and for long enough I hope I can take all your suffering away’ that’s it and I’m sobbing in her arms again. She is one very special loving lady.

Loads of people come and say their goodbyes Liz, Jacqui, Amanda, Sue from the Isle of Wight, nag bag Jo (love you really), Dave West and Mr Muscles to name just a few of the hundreds of people that pass by, I even got a kiss from Mr Bottom (on the cheek of course) 🙂 It’s all too much and as I am pushed by Rita to head outside for a fag with a coffee I bump into the Black Country clan. Claire from Telford, Julie from Walsall and Cath from Wolverhampton. We all sing the famous Black Country song together, which opening lines are:

‘I’m Black Country born and I’m Black Country bred, I’m strong in the arm and thick in the head’

Which makes Janine HRH laugh who is just passing to also say goodbye quickly. We all have a photo taken together to remember the precious moment. Julie the Store manager of Walsall had spoken to me the night before. She like so many others in the BHS family saw my blog via the daily shares from my loyal supporters and started to read it, she is now addicted and loves it. I’m so pleased to get feedback about my blog from anyone, good or bad. As I say countless times I have never written anything longer than a postcard since leaving school apart from work reports. I can see the joy in her face when she got to meet me last night and I’m just so pleased that I’m reaching out to people, that awareness through my journey is spreading and that hopefully that I can spare others from this awful disease.

Now finally outside with a fag and a coffee the bags of presents and clothes go whizzing past me by the team of helpers. Karen comes and joins me. She is so upset and starts crying. I beg her not to cry as I just can’t cry anymore, my left eye has become swollen I’ve cried so much. She just can’t stop as she hugs me and it starts me off again. She says she is crying because she has enjoyed just being with me again after not seeing me for so long, that she misses me everyday at work and doesn’t want to leave me as she doesn’t know when she will see me again. I can’t stop her crying. She puts her sun glasses on the hide her eyes from everyone but as she is still crying, her lips are all wobbly and I can see her biting her lips trying to control them. I give her some daisies from my bag for her to give to Emma at Kingston. This makes her even worse and she says that she can’t face seeing Emma as she knows she will just breakdown again. I just don’t know what to do now, like princess the day before I just can’t stop her sobbing. Eventually she leaves me and their is a pain in my heart for her as I hate how upset she is, my poor lovely Karen.

I can’t see Rita and so I ask Mr Grey to push me to the loo for an emergency wee before we head off. As we go through the reception area I saw Rita out of the corner of my eye talking to Janine HRH she is crying too. On the way back from the loo she passes me trying to hide the tears but that’s clearly not going to work. I don’t think that she wanted to me to see her upset and she says that she was just telling Janine how much she had enjoyed the last two days with me and she doesn’t want it to end. I know how she feels, I have loved every moment, even the teary ones but we all have to leave and hope that I’m well enough to be able to attend the next conference in 6 months time.

Back outside the front of the hotel Mr Grey pulls up with his car. He has a Citroen DS3, the sporty one. Now it’s so full of all my presents that poor Princess in the back has no room at all. Wheelchair finally wedged in too I have to say my final goodbyes and thanks to Rita and Leanne who have looked after me so well for the past two days. All done and safely in the car we pull away from the hotel and I just feel so blessed and happy. I’m also looking forward to being back home too, to Steve, Rebecca, my chair and of course our ungrateful rescued cat and lazy Molly dog.

Final photos from conference that I didn’t use in my previous posts but I want to share with you all as they form part of those precious moments with you all.

 

 

 

 

 

 

 

Finally back at home and a quick cup of tea for Mr Grey and Princess. Princess gets to see and play with my dream machine chair. Molly dog goes mad when she sees me as she is so happy to have her mommy back. Tia is nowhere to be seen and when she does appear she ignores me as usual apart from feeding time of course, she has never been grateful that bloody cat. Final goodbyes done and I’m alone with Steve again in my dream machine. But as I previously mentioned I’m so worn out within 1/2 an hour I am asleep and I slept for 4 hours.

I wake at 4 pm and at 7 pm I have to start taking the double dose of slow release morphine which Marina has agreed with my doctor. Drugs taken and although I was warned that it may knock me about for 2-3 days until my body got used to the new amount I wasn’t quiet prepared for the fatigue to kick in so badly so quickly. I can’t keep my eyes open, my speech is slow and slurred like I’ve had a stroke. This continues into Friday and although I have planned to go to the Midlands as I have arranged to meet up with friends. Which I was so looking forward too, I know that I won’t be able to go. I have no control over the fatigue and I start to cancel my plans with friends with a very heavy heart as I send the messages.

I have however a surprise for you Tracy Nelson, I found Mike for you. I told you he had left but he has returned to the BHS family and he remembers you working with him in Merry Hill. He sends his love to you.

 

 

 

 

Friday

Mary was due round at 1 pm today to drop off buckets and badges for my weekend in the Midlands but I didn’t cancel her as I wanted to see her. We had a lovely hour together catching up on the conference. It was a good job she was running late as I had been asleep again and only just woke up as she arrived. We were just about to get ready to leave as I have to have bloods taken at the hospital at 3 pm prior to chemo starting on Monday when the phone rings. It’s my doctor just checking on the prescription sent through from Marina and did I want any other drugs? I asked her whilst I had her on the phone if the results were in from my MRI scan taken last week. FINALLY some good news, she talked about normal wear and tear to my spine but the only words I heard clearly was that the cancer had not spread to my bones. Prayers are working Rita 🙂 I was glad that Mary was there too to share the good news with me and Steve.

Now I was going to bring you up to date date but this post is getting too long so I will try again tomorrow as lots has happened, nothing bad so don’t panic.

I want to just thank the extra donations from: High Wycombe BHS team of £100, The Big man himself, Juddy £110 from his cake sales, Countess Judd for the remaining £25 from her cake bake off, Jenny and Jx £10, Chichester BHS team for their extra £118, my BHS Kingston team for the remaining £170, and finally an anonymous donation of £20. Thank you all so much as every penny counts towards this great charity, Beating Bowel Cancer.

I also want to thank Liz who works with Steve, she contacts him every week to see how I am and to support Steve, thank you.

Now don’t forget it’s Strictly Come Dancing tonight and we all need to support the wonderfully sexy Peter Andre as he has also supported me by re-tweeting my Cancer Free video.

And finally on the prayer list for tomorrow Rita is Karen and Frankie, my loved ones as always, for anyone who is grieving for lost loved ones and for everyone to find the right balance in their emotional buckets.

 

On the way back from the Jacuzzi BFF and I stopped to have a quick fag before getting ready (in an allowed area, before you start). I phone Steve to tell him how good it was and that we were going to get ready now. That as normal there will be little contact from me as the evening normally flies by and before you know it it’s midnight.

Phone call over BFF pushes me back to my room so that we can all get ready. The plan for tonight is that Rita takes over looking after me so that Leanne can enjoy herself. Rita is moving into my room and I have worried about this for ages. If I can’t sleep which is normal I don’t want to keep her up either, she has a long drive tomorrow too but there is no telling her, she won’t listen and I am touched that she like so many put me before their own needs.

BFF leaves me in my room to get ready. Alone, quiet no one there. This doesn’t happen very often to me, being alone and sometimes when it does I get scared. I worry about the next 12 months and I love my life, I don’t want it to end, I’m not through with living yet, I want more, more time but I have no control over my illness and I just have to accept that whilst I don’t know how long I have left I’m going to enjoy it the best that I can and share precious moments with the people I love.

In the disabled shower there is a seat, so I’m seat washing off the chlorine and still wondering what I can do to support the business. Mr Bottoms words still ringing in my head. I have to think of something. Then it came to me! The ‘Golden Quarter’ as we like to call it in retail is the most important time in retail for us all. Mr Bottom challenged everyone to come up with an idea. Now all those ideas  Mr Bottom asked for need to be looked at and analysed. We can’t afford to have Store Managers off the shop floor looking into ideas. They need to be with their teams driving service and sales. So is that something I could do? To support the whole business? Collate and look into everyone’s ideas?

Prior to going swimming I had a chat with my new boss Jonathan Hancock and we discussed how I could support my region with project work from their ideas but actually just one region may not have all the answers. If I collated all the regions ideas, as lots would be duplicated could I liaise with Head Office departments to follow through on the best ones. I’m excited now as it least I have something to put forward to the business that I can do for them.

Dressed, make up and wig on we head off to the evening do. The corridors are busy with everyone in their best dresses and tuxedo’s. Perfume and aftershave fills the air. Everyone looks lovely, smart and there is a buzz of excitement for the awards ceremony prior to dinner. The awards are for Store Manager of the year and STAR, which is why Karen is at conference as she has been nominated from our region.

It’s weird being in a wheelchair as you are at the wrong height to be all to talk to people. Throughout the day everyone was sat down in the auditorium and I wasn’t aware of how separated I felt until the evening do. We were all called through to see the awards presentation. The noise of everyone talking was too much. I’m not used to it. Lots of people came to say hello and to admire my wig but having a conversion was painful so I tried standing for a while. But Rita was soon on to me and returned me to my chair. She pushed me through the crowds to find Karen but she was nowhere to be seen, not at my level anyway. I wanted to be with her to celebrate if she won and to be there if she didn’t. We couldn’t find her anywhere and the Awards started. Karen didn’t win and I never found her until later. I was sad for her but she was our regional winner and I hoped that she took comfort in that.

A quick fag and then into the dining hall for the meal. As I have mentioned on a previous post I have been able to chose who I had at my table and although I hadn’t included Karen in that list but we moved her onto the end of our table so that she was with us all. The tables were decorated beautifully, all festive and all seated we chat away, as does every other table. 500 people talking and the noise for me is just too much but I know when the meal is over everyone will be off dancing and peace will resume. The menu this year was interesting, so interesting were the starters that I was looking forward to my bread roll. We all have to pre order our food choices and whilst they all sounded very posh on the form they aren’t what I would normally order if out for a meal. However it’s all free and I appreciate that conference costs the business a lot of money.

So we are all sat talking away and I then go round the table taking photo’s of me with everyone there and here are those photo’s precious moments captured for us all to remember.

 

 

 

 

I return to my seat and continue talking when from behind me there appears Sam McGeorgor and with her an endless stream of daisy bags. I couldn’t grasp what was going on. She briefly said that Region 9 had had a collection for me and the gifts were for my daisy den. I was so shocked and managing to hold the tears back due to the shock I think and then I saw the rug. Now what’s so special about a rug I hear you say. Well whilst out shopping with my mom for soft furnishings for daisy den I had a budget of £250 – £300. I actually spent £402. I desperately wanted a rug and I saw one that a liked but didn’t buy it as I had spent too much already. I decided that any other soft furnishings would have to be brought over the next few months, little bits at a time. So when I saw the rug it just finished me off and the tears rolled again. I’m crying, Rita’s crying, Mother Hen is crying as I keep going on about the rug story. I opened the gifts and they are just so beautiful. The people in Region 9 are a mix of people who know me and who don’t know me. They thoughfulness and generousity is overwhelming, I just can’t believe that they had done this for me. Massive thanks to:

Regional Manager –  Sam McGregor
Store Managers
Rita –  Chichester
Yasmin – Bromley
Caroline & Marie in Woking
Jo – Worthing
Paul – Brighton
Jo – Crawley
Danny – Basingstoke
Sue – Isle of Wight
Simon – Camberly
Ross – Ashford
Jan – Gravesend
Fiona – Hempstead Valley
Simon / Sheldon – Tunbridge Wells
Emma – Eastbourne
Ian – Maidstone
Justine – Fareham
Chris Derry – Loss Prevention

 

 

 

 

 

 

 

So it’s all to much for me and I leave my bread roll to go outside for a fag to pull myself together. On the way back to my table we pass Caroline (Princess) and other managers from Region 9 so we stop to thank them. Hugs and thank you’s done to those on the table I know and don’t know as I hold onto my wig and tears flow again. Princess is quiet and just looks at me. We have worked together before and known each other for 8 years but I haven’t seen her for ages. I forget how hard it is sometimes for people who know the old me and then see the new me. She just cries and cries, I can’t cheer her up or get her to stop at all. She isn’t even speaking to me, she just sits there tears rolling uncontrollably. I have an idea, I reach into my bag on my chair and give her a daisy. This doesn’t help either, sadly. There is nothing I can do now, out of ideas so I just have to leave her. Maybe if I’m not there it will be better and she can stop crying. We return to our table and they have cleared away my bloody bread roll! Damn I was looking forward to that.

The meal continued, main course was beef and it was beautifully cooked and fell apart as you cut into it. Mr Grey was next to me and he didn’t eat his starter nor did he look like he was going to eat his main meal. I nag him continually as he needs to eat to soak up the alcohol. I love Mr Grey to bits, he always makes me laugh. He phones me regularly and no matter what news I have for him, which, if medical is normally bad news, he just always says something funny and I’m soon laughing. He is just such a special person to me. He won’t eat apart from two mouthfuls of mashed potato and I worry about him getting through the evening on alcohol alone.

Then Rita gets a message from her sister to say that the winner of tonight’s celebrity Mr & Mrs, Sean Fletcher, a presenter on Good Morning Britain  has donated £30,000 to Beating Bowel Cancer, wow £30,000, that’s an amazing amount and I’m excited as I know how much this gift will mean to them all. I then get a message from ‘Countess Judd’ to say that Sean Fletcher has just re-tweeted my blog to support me, excellent news and I’m so pleased to have his support.

 

Pudding next and although I had chosen the cheesecake it wasn’t as nice as the description so I stole Elaine’s pudding. Thanks Elaine the chocolate pudding was lovely. Meal over we head outside for a fag.

So a gang of about 8 of us are outside and Simon Lamb joins us, now he like Princess hasn’t seen me for about a year and it must be hard from him like others to see me wheelchair bound. I didn’t know that his mom had died of cancer and as he talks to us all he starts to get upset and walks away. I ask Mr Grey to go after him to see if he is okay as men are not good at public displays of emotion. Simon is okay and we all return inside. As we get to our table the sight of my gifts starts me off crying again, now Mr Grey is in bits too with me along with Rita. Will we all ever stop crying. It’s getting beyond silly now but I can’t help how I feel and I can’t stop the emotion. I’m so grateful for the gifts and the bloody rug will always make me cry.

The evenings disco is announced and people start to leave the dining area. I’m so pleased as the noise level will come down and we will be able to chat. As people pass by lots stop to hug and say hello and I hang onto my wig. Amanda stops by to see how I’m doing and I tell her about the gifts. Then Janine HRH comes to sit with me and again I try to tell her about Region 9 and the beautiful gifts they have brought me, again through tears as I talk about the bloody rug.

Sam the Home Director comes over to me too, she says ‘Wendy what can I do to help you through your illness to help just you?’ Bless her she just wants to help me. So my reply is simple. I explain that I am blessed by friends and family, that I am surrounded by love and if I were to die tomorrow I am at peace with myself. I explain that I see BHS like me on a journey over the next 12 months which isn’t going to be easy but in a years time I want to still be here as I want BHS to be. So how she can help me? She can take the messages from Mr Bottom today and ensure a strong recovery for BHS. That’s what I want, for me and BHS to be in recovery this time next year. We spent the next 1/2 an hour discussing this with HRH and I tell HRH of my idea on how I can support the business. I also discuss the importance of people like Karen and Yvonne at BHS Kingston who give so much but due to Government changes around the minimum wage are sadly on the same pay level as others that contribute less. I have always been passionate about staff that give so much. A Store Manager is important in terms of leading and inspiring a team but it’s the staff on the shop floor that are key to our success. We discuss the post I did about M&S and the shocking service I received. We had a great conversation putting the worlds to rights. Coffee next which was lovely as I don’t drink anymore and then outside for yet another fag break.

It’s about 11.30 and at the entrance of the hotel the visual team have put up a collection of Christmas theme displays featuring home and other products of the season to come. I have an idea for the calendar, as we don’t have a Christmas shot yet why not use the display and BHS product. For the next 1/2 hour Rita and I have a right giggle as I pose in the themed areas with my arse showing. But we got some great shots and I hope Steve will be happy. The one in this post will not be used but I thought it would make you all laugh. I am trying to dust whilst flashing my bum.

At around midnight Rita decides that it’s my bedtime so we head off back to our room. Coffees made we discuss things that I would like to do, treating people, sharing precious moments together. I have always wanted to visit Ireland and I ask Rita if we can go together and have tea in Freckles kitchen (Rita’s sister). Rita loves this idea and so when my treatment is over or when I get a treatment break that’s the plan. A trip to Ireland to see a bit of Rita’s world. Karen joins us for coffee and it’s now just after 1 am and after talking for a while Rita can see my eyes are getting heavy so she asks Karen to leave so that I can go to bed. I’m dressed in the PJ’s which were also part of my presents. Teeth brushed I get into bed. I’m so so tired and I can’t even remember Rita getting into bed. I must of fallen asleep as soon as my head hit the pillow. I was worried about keeping Rita awake but I shouldn’t have worried at all as I sleep for 5 hours! wow I can’t remember the last time I slept for that long. It was beautiful, restful sleep, a deep slumber, content and happy sleep. I woke at 6.10 feeling refreshed and so happy that I had slept for so long. Rita said that she kept waking up throughout the night to check up on me, bless her but whenever she did I was just gently purring (snoring) and she was so happy too that I had slept for so long.

So that was the evening of conference and I will post up the next day soon xxx