Sleep and Cake

So Steve was going into the office today, so the plan as always if this is the case is that he goes to bed first so he can sleep and not worry about me. I stay up until 12.30 but I’m so tired and head up to bed. I slept until 4.52 am, wow that’s good. I get up and head for the bathroom, clean my teeth and then the runs start :-( oh lovely to wake up too. I come out of the bathroom to head downstairs. Now I always use my iPhone for a light so I’m trying to get down the stairs in the dark, Tia the ungrateful rescued cat has decided her new way of trying to kill me is to lie on the stairs so I trip over her, my iPhone goes flying down the stairs and lands luckily bottom side up, Tia is hissing at me I’m in the dark and the runs start again! Right so now I’m pissed off. I manage to get a coffee, 1/2 biscuit and a coffee down me but I feel sick, the morning is just not going well.

I manage to sleep again until it’s daylight and I then head into the chemo gazebo and sleep again until I hear Steve awake and ready for work. He and mom are leaving me today but mom is not going until around until 3 pm. She as ever has done all the ironing, housework, going on errands and walks Molly too for me before she leaves, bless my mom. I however sleep through it all as although I have tried to do some project work I just can’t stay awake. The pain in my back is getting worse again and with extra painkillers comes the need for more sleep or is it just fatigue? As Steve hasn’t heard from me via text at work he is worried and returns home at lunchtime. He has booked a doctors appointment as he has always suffered with eczema  but it’s out of control now. I think it’s stress but the doctor says that there is no connection. He returns home with pots of cream to put on over the next 3 days which should clear it up.

Great Cake Hilary, thank you
Great Cake Hilary, thank you

At 3 pm I have visitors Hilary and Ian, old friends via the political life that Steve and I have been part of since we moved to Wycombe. Hilary is great at baking and has put lots of love into my St Clements cake. We sat and chatted in the shade out of the sunshine for a lovely hour. She even brought me two jars of jam which Steve and I tested as soon as they had gone and it is delicious. Thank you so much for both sugary treats and I feel so much better for them.

School Day ‘Top Tips’ – yesterday I said that I was going to recall some of the mad things we did through school. Yesterday I embarrassed Deb with the sunburn story but today as schools are just going back I thought I’d only embarrass myself and give all you young readers a ‘top tip’. When I started at the Crestwood School I decided that I would write all my own sick notes and sign them as my mom as her writing and signature was easy to copy. This I did throughout the whole of my secondary education and it enabled me to have whatever time off I needed. Even if my mom wrote a genuine note I would write one in my own hand to keep up the pretence. I did this until the very last time I was ill and mom wrote me a note so I handed it in as normal but didn’t do my usual copy. At some point in the day I was called to the office to see Miss Woodhall as they suspected it was a forged letter, which it wasn’t but it didn’t match the years of my forged letter writing. I looked Miss Woodhall in the eye and could say with conviction that it was a genuine note written by my mom and if she didn’t believe me she was free to call my mom. I could say this cos it was true. She believed me and didn’t call my mom in the end. So ‘top tip’ is if you are going to do this keep it up for the entire secondary school education, job done LOL.

Thank you to Pauline who donated £20 today on my ‘Just Giving’ page and left me a lovely message too. Donations have been slow over the last few days so I’m going to attach the Cancer Free song again, just to make you smile and to if you haven’t already jog your memory to give just a pound for a fabulous charity Beating Bowel Cancer who have been so supportive to me.

I had a letter today from Macmillan who have acknowledged my complaint regarding not being seen and they blame my doctors although they can see the phone call on their system that I made to them. They are also going to take my comments seriously about their literature. I think it’s just a standard letter that will end up going nowhere however I can live in hope, as for my generation and those who will sadly follow me their information leaflets are not good at all.

Other great news is that we have now in just under 3 months had over 50,000 hit’s on to my blog so the message is getting out there to others. Steve said last night that he is so pleased that I started the blog, that he finds comfort too in the many messages of support he receives from people he does and doesn’t know. That he doesn’t feel alone in the process, so thank you to everyone how has shown any of my precious loved ones support as it means so much to me and them.

So that’s it for today a short one which will please the readers in the bath or on the loo. Some days it’s just hard to keep positive and write stuff down. I love doing my blog but if I’m honest I am now sick of being sick, feeling ill everyday, being in pain. The whole thing wears me down so much. I would have loved to walk in the sunshine today, I would love to enjoy a beer tonight and I would love to not be a zombie with the only topic of conversation is illness and how am I feeling every few minutes. I long to be normal, just do stuff without having to think about it first. Simple things like walking, standing upright or thinking of going to the shops or just to drive my car. I want to pick daisies, just little ones and hope that this treatment will work so that I can do this stuff again.

So if you are tired or just had a hard day, be kind to yourself and put your feet up, recharge those batteries and smile cos you will feel better soon. Look after your health and don’t take it for granted as I have for many years.

Oh and finally no Squirrel sightings for you today I think Tia has frightened them off finally, she is good for some things around the house bless her, so she can stay after all.

Missed bits and quick updates

My last two posts have been a bit long as there was so much to get in but I did miss things out which I need to put right on top of my usual daily ramblings.

#Squirrelgate – two mornings ago, very early I was in the chemo gazebo alone and there was one of Molly’s balls on the floor. I saw out of the corner of my eye a squirrel coming for it. I stopped and stared at it, it stared back at me. I could see my phone nearby and moved my hand slowly towards the phone so that I could video what was happening but the bloody thing must have known what I was going to do or was just camera shy. It ran off down the garden and the moment was lost but at least Molly’s ball was safe.

Tia – The ungrateful rescued cat – Last week whilst I was raged with pain and unable to sleep. I was tossing and turning to get comfy in bed. This at one point involved me putting one leg out of the quilt and having one leg in. Now Tia always sleeps on Steve’s side of the bed as he is her favourite person. She was outraged that my leg had invaded her space and attacked my leg. So I’m in pain, the cats attacking and hissing at me! No wonder I gave up trying to sleep that night, not welcomed in my own bed.

IMG_4391Last Saturday night – Debs is a friend of Leah’s who I went to school with, they are part of the same running club. Debs was a very close friend of my sister Julie. As Leah shares my posts Debs started reading then. Can you imagine the moment she actually realised that she knew me, I can’t, it must have been such a shock for her. Anyway she turned up on Saturday night to see me but I sadly didn’t get a photo of her. I didn’t mention Tamsin either as she dropped in for a quick half an hour but had to leave but I appreciate you making the effort, thank you. And finally from last Saturday I forgot to post up the photo of April grabbing my boobs as they are along with my feet, cancer and pain free areas of my body. So here’s the photo which always makes me smile.

Now I have shared lots of things with you all but being with so many school friends has brought back so many fond memories that I may start with a daily section for a few weeks to make you all laugh about school day memories. But where to start? Should it be from my primary school days where I took in a 12 tray of Carling Black Label to share with school friends as this beer was left over from a family party? Or should it be the story of my last day at The Crestwood School where I got everyone drunk and we were all sent home in disgrace? Endless options but I will do some stories for you over the coming days. I have decided to start with embarrassing Debs who is married to Tony Dalloway and this story came back to me whilst we were outside having a fag together. I was at her house for the day and we had been sun bathing, can’t remember how old we were. I didn’t use any cream, well you didn’t back then did you? After hours in the garden I was red raw, really burnt and so seeking advice from her as I was so sore her words of advice was to get into a hot bath, as hot as I could stand it and relax. Well you can imagine the pain, thanks Debs for trying to kill me off at such a young age! So top health tip, if poorly in any way don’t ask Deb Dalloway for advice :-)

I had an email from Frankie two days ago, so just to let you know that she is okay on cycle 3 of chemo and not had to return to hospital, which is great news. I have asked her to let me know if the chemo is working for her as she must be close to the halfway CT scan and the dreaded results appointment. Thinking of you Frankie x

Back to last night. I was pain free, fabulous but I was flushed and red faced but cold inside. I felt low inside, just unwell and although glad of being pain free it had been a full on day and I was also tired. Steve suggested that I should try to go to bed. It was only 11 pm and if I go too early then I’m awake too early. I however agreed as I needed sleep. We went to the kitchen to take my last drugs of the day, new ones from Nurse Suzanne, these make you drowsy so I hoped they would enable me to sleep longer. I start to feel sick and I moved to the downstairs loo as Steve will never to able to cope with seeing me being sick. I manage not to be sick so Steve gives me anti sickness drugs too and I head off to bed. 2.36 am I am awake! FFS! So downstairs I head for the usual 1/2 biscuit, coffee and a fag. No sign of Tia (the ungrateful rescued cat) and that’s because I have locked her in Richards bedroom by mistake last night but this doesn’t come to light until mom wakes up at 7 am. I start to gag again and I’m sick but most food has been digested so it’s just bile really. Then I start with the diarrhea which after only being twice in over one week is not a bad thing. The constant morphine and co-codamol taking over the past weeks have bunged me up and after yesterday of not needing them finally my body is starting to work again. I manage to sleep from 4 – 6 am when it’s finally day light comes and I can move into the chemo gazebo :-)

#Squirrelgate – update number 2, Tia has chased off the squirrel from the garden, The squirrel ran up the tree and was making the most peculiar pissed off sound for ages. I tried to record it in the tree again for you but without success but one day I’ll get a good shot of it for you all.

Thank you to Alison for my parcel today of laminated photo’s that I can put in my Chemo gazebo to brighten it up a bit plus the animal treats, they will love them.

Now loads of you have contacted me about how pleased you are that I’m not in pain. As ever, I have said all along this isn’t about me it’s about my loved ones. As Steve now feels so much better that there is help at the end of a phone line if he needs it. That he is not solely responsible for my pain. Can you imagine me asking him for more pain relief in agony and he has given me everything that he is allowed too. How soul destroying is all that? After posting up about abuse and the journey we have been on together I feel that he deserves some love. Someone posted last night that he deserves a ‘husband award’ and he does. But they don’t do those so I have dedicated a song for him. All men will now just switch off as the ‘slush alert’ button is now flashing in their brains but that’s okay as the girls will love it.

It’s an old classic and I heard this song when Rebecca played it on one of our trips to the hospital. I hadn’t heard it in years and I cried as I drove soaking up the words and their true meaning, the true meaning of love, which when the chips are down we show are true colours. The true depth of love that luckily for me is endless and knows no limit from my devoted Mr Wonderful. So here it is for you, listen and get the tissues ready first.

Well we’ve just returned from hospital to have my PICC line removed which was easy. Apparently Frankie was in this morning and was asking after me, bless her. We just missed each other :-(

We returned home after collecting an Iced Coffee Frappe from McDonald’s yum. I have spent the last 2 hours doing project work but put Kingston’s figures into Harrow’s template, now I’m mad. I’ve had the runs and then just thrown up so my day has been a little testing to say the least but hey at least the PICC line has gone and I can at last have a shower although my arm will look like a chicken drumstick, but I’ll be clean at last.

Catch you all tomorrow, much love xx

You can ring my Bell

Sorry but today is another long post so tea/coffee/biscuits no toilet or bathtime reading so you can’t say that you haven’t been warned.

So back to yesterday briefly where mom has dropped me off for chemo. I’m dreading the side effects plus hair loss so I’m not too happy. Mom is concerned that I can carry my bag but I just say I’m fine and head up to the Sunrise Ward. I’m put in bay 3, bad view from the window but hey it’s okay. On my right I have a man who is having a blood transfusion, he has earphones on and so I can’t talk to him. On my left is a black woman with her friend who talk constantly to each other and she is saying about her first hour everyday spent praising the Lord, and then there was an older man in his late 70’s with his daughter.

The nurses come to do their stuff, unlike the other chemo there are lots of different smaller bags to go through first before the chemo. Plus an injection, before the nurse says anything as she comes towards my left arm with the needle I say ‘don’t worry, just a small prick hey,’ she laughs. The steroids and stuff that make your bum tingle safely in and now for the 2 hours of chemo. Left alone I get on with my project work. There is wifi on the ward but I can’t be doing with dealing with ‘buffer face’ without Steve to help so I stick to work.

The black woman on my right has obviously beaten breast cancer, she has come for an injection, the curtains are pulled around her as she is so scared of needles. Really!! I can hear her getting distressed and I can’t really understand anyone who has gone through any treatment like chemo can still be afraid of needles. A bit like having a baby, you maybe shy in the early days of having your bits looked at but afterwards don’t really care who see’s it at all. She thanks the Lord and vegetables for her remission. If I ever get into remission I shall tell everyone it was due to Rita’s prayers, too much coffee and lots of fags that did it just to shock people!

The elderly man is ready to go home, he has had to have the doctor to him twice due to chest pains and he has an infection. The nurses are checking his drugs and ask him how much Fragmin he has left (the drug I had to stab myself with after surgery to prevent blood clots). ‘Oh I ran out of those two weeks ago’ he said. The nurses are horrified and they tell him he could have had a heart attack. Now the daughter is angry and tells them that if someone had just called her about the drugs etc she would ensure he had what he needed, she told them that she couldn’t make every appointment with her dad but is frustrated that no one talks to her. Her dad talks about wanting a good nights sleep from pain and the hours he sits alone in his chair. I’m not as alone as this poor man he is worse as he faces pain and loneliness everyday. How are we getting care so wrong in this day and age??

I have asked about my CEA levels now 4 times but the same answer comes back, ‘oh I’ll check in a minute.’ These are cancer markers in the blood to see if it’s getting worse. I ask who is actually in charge of my pain and the nurses look confused, they confer and decide it’s my doctor, my GP.

I continue with project work until they tell my that the hairdresser will see me now. So I’m unplugged and wheel myself and the drip machine with the aid of my walking stick into the hairdressers. It’s actually just another side room, no sink or hairdryers here just bags of samples. We go through all the books to pick out 3 wigs, they are ordered and if you like them you can chose one for free, if you like the others you can buy them too VAT free. I’m not enthusiastic about this and she can see this. She points out that with cancer choice is removed for you but with your hair it is something that I can finally choose.

So I pick out 3 styles and job done. She then starts to advise me about new hair growth and how to shave the first growth back, not all the way but just to stimulate more growth. She says that my hair will start to grow back after treatment finishes and that I’ll soon have my hair back to normal. Are you mad I reply, it’s taken me years to grow this to it’s present length and with a prognosis of 18 -24 months starting in February I don’t think I will have time to grow it back. She is bent double with laughter as I was saying it jokingly. She thought it was so funny, am I the only person who can laugh at this shit? I go back to the ward and try to continue with my project work. I fall asleep to be woken to hear that it’s all over and I can go home. OMG I didn’t snore did I? The ward was now empty they said it was a gentle purr (liars) I did dribble and that they didn’t want to wake me up. I ask again about my CEA levels and they say they weren’t requested, liars again I think. I have decided that the hairdresser is to be called ‘The Wiggy Woman” as she doesn’t actual do hairdressing so that’s the trades description legalities covered :-)

Chemo over and Steve picks me up, there are no side effects like the old chemo but I’ve gone 5 hours now without a fag and a coffee plus I hear the news about the nurses now not coming so I’m pissed off. We return home and I’m set up in my chemo gazebo with my new bell, a present from Tammy. We now have a system in place, one ring for Steve, two rings for Mom and continuous ringing for Rebecca as she is likely to be in her bedroom and may not hear me. My loved ones are expecting the same side effects with starting chemo as before which means me being shit for about 5  – 9 days but I’m fine. Steve and I discuss the nurses as he has spoken to them and he is reassured, I’m just mad. So we do some research. Ian Rennie cover two counties Bucks and Hertfordshire. It costs them 6.5 million pounds to provide their services and 85% of this comes from public donations, wow. Now as fab as that is why is it that the NHS are relying on charities to care for cancer patients? Where are the district nurses? Is all this due to continual cuts in our NHS that charities have to pick up the pieces? How is that right? No wonder it goes wrong! As they provide palliative care until the end it enables me to ask Steve about end of days, something that has been troubling me. I want you here he said, oh good cos that’s what I want but not everyone wants a dead body in their house and after the service we have received so far I remind him that it maybe 3 weeks before anyone moves me and there would be maggots everywhere. Don’t worry he says as the undertakers are paid and therefore the service will be quick.

So tea done and after a lengthy call from Nicky it’s curfew time. But I haven’t been able to do ‘wack a comment’ so I’m sad about this but a deal is a deal and I wait until after 11 pm to answer you all and your lovely messages full of love and caring.

Now I forgot to say about Saturday’s ‘Strictly Come Dancing’ an hour and a half of nothing happening at all really, they could have done this in about half and hour or shorter but Peter Andre is on it and he supported me with his retweet so I’m going to support him, he looked fabulous didn’t he hey :-)

IMG_4424Steve goes to bed before me and our new plan courtesy of my moms brainwave is to put a quilt on top of my side of the bed for extra softness so I can sleep. I assure Steve that I’ll be okay, I’ll do ‘wack a comment’ and I’ll come to bed. He goes up and the stomach cramps start now I was expecting things to move as it’s a side effect but I didn’t expect nothing more than rabbit poo and I’ve seen bigger on country walks so if that’s it’s worse it’s going to be then I can cope :-) I didn’t take any morphine before I go to bed as I don’t feel I need it at all, I feel better than I have done in weeks. I go upstairs at 1.20 am and clean my teeth. Now I normally get undressed in the loo so that I don’t wake Steve up but I’m stuck as I went into hospital with a bra on and now I can’t get it off without feeding it through the wire, I have to remove the drugs from the bum bag and finally I’m free. I sleep until 5.30 wow even the cat is impressed and Molly even decides to say good morning too as it’s a more reasonable hour. So I will await the nurses due at 10 am and I will be nice to them as Steve is worried that I want to give my feedback to someone about the lack of support but a self funding charity hearing my rants is probably not the best way to win friends and influence people.

I look awful but this is Suzanne another angel in my life
I look awful but this is Suzanne another angel in my life

The nurse finally arrives, she is Irish, she is lovely and she even takes her tea the same way as Rita does (waving the tea bag at the water, no sugar or milk). She spent an hour and a half with us. She listed all my drugs, discussed pain control, sorted out my blue badge (Jo will be pleased) gave me the contacts for wheelchairs, she organised a prescription to be collected today so that I can start targeted pain relief today that may work. She offered us a hospital bed and a commode, now this is a step too far and we declined the last two options as I think we are talking end of days equipment here. Thank you Suzanne, just brilliant and when she leaves mom hugs me “help at last” are her words. I quickly message Rita as I know she would be happy that the nurse is Irish and it would make her smile. I call Jani at Beating Bowel Cancer and we have a long overdue one on one chat, thanks for all your support Jani, and then i sleep as I’m now knackered.

Steve whilst I’m asleep goes out and buys me a wheel chair and the Red Cross nurses drops in to see if everything is okay, now help and support is coming out of everywhere. As I’m talking to this lady the phone rings and you will never guess who it is… Macmillan complaints department!! This has probably come about from Jani at Beating Bowel Cancer endlessly contacting them for me to get me some help. Poor Chris the gentleman who calls me gets it both barrels plus tears. I tell him some of my story and the feeling of abandonment by them and also how shit their literature is. I told him I’ve wrote my own sex advice on my blog and tell him to read it as that’s real advice and not the shit that they produce. Steve let the Red Cross lady out as she could hear my rant and Steve says she was scared. Then Steve listened to my rant at Chris from Macmillan and he says that he would have been a little more calmer. Well do you know what, sometimes people just need telling like it is! Anyway my case is going forward as a formal complaint and I will get feedback.

So what a day hey! It’s been mad here but at least now I have help at the end of the phone for my loved ones.
Finally, thank you to those brave people who have volunteered for the calendar. Steve is coordinating this for me offline so if you could drop him a line he will give you all the information you need. His email is shown as an image to beat the nasty spam people!email If you live within a reasonable radius he can take the picture for you, and if you live further away or have a photographer friend he can give you the requirements.

I’m back again

This is a long post so you will need a tea/coffee/beer plus chocolate biscuits, any excuse hey :-) Oh and it’s too long to read on the loo Mr Grump Bum and Ian, you will get cold bottoms and not to be read in the bath either as your skin will look 80 years old Kirsty!

I left you all on Friday with the weekends posts already written on abuse due to the weekend being planned with friends and family. So Saturday morning I wake at 4 am and the pain starts again. I take drugs and wait for it to ease but it doesn’t, so two hours later I take my other drugs early to ease the pain but it doesn’t. After another hour of watching the clock go by I start taking morphine. A small dose to start and I wait for it to ease but it doesn’t. Another hour goes by and I take more morphine, this continues until 9 am and the pain still hasn’t eased up at all, just the constant pain, a deep ache that refuses to go away. Jani from the Beating Bowel Cancer charity has been sending me messages as she is trying to help with getting the Macmillan nurses to come and see me. After 5 hours of constant pain and reading her words of support and kindness I can’t cope anymore and for the first time I sit and cry with self pity.

How can I possibly get up to the Midlands with this pain, how will I cope with the journey. I don’t want to cancel, I don’t want to let everyone down but my spirit and self resolve is so low, I just sob alone and hope Steve wakes up soon to help me. Steve wakes just after 9 am and the despair in his face as he listens to my plight and hours of pain is awful. I hate sharing my despair with my loved ones as it only hurts them. Steve gives me more morphine and we wait it out to see if the pain eases, which it starts to do, I have taken enough drugs now to kill a small horse! We have put no pressure on ourselves in terms of time of arrival at my mom’s so we just wait it out.

The pain eases at last. Breakfast and packing done we head off for our weekend of picking daisies. We stop on the M42 for a coffee, Steve drops me and Rebecca at the front doors so I don’t have to walk far and goes to park the car. I didn’t take my ‘Rosie and Jim’ style walking stick which I regretted very quickly. The walk to the seating area, then to the loos and then to the car was all too much. We arrive at my moms and the raging pain returns. Mom has set a sun lounger up outside for me to rest on but even with more drugs taken I can’t escape the pain. Mom and Steve sit with me in silence as I twist and turn, sit up and then lie down again trying to cope and escape from the pain. After about an hour Steve suggests that I take the maximum strength of morphine and try to rest in bed upstairs as my moms neighbours are doing DIY. Music, sawing and hammering fills the air and in fact replaces the silence of the despair. I will agree to anything at this point just to be pain free. Morphine taken we head off to bed to rest and I do sleep for 2 hours, fantastic. When I wake I feel good,  thankfully the pain has eased into a dull roar.

Steve and I return downstairs to find Nanny Jan (neighbour) chatting away to Rebecca and mom. Nicky and Beth join us too as she has been waiting to come and see me but I didn’t answer her messages due to the pain. As the hour goes by and more drugs I feel better and better. I am now looking forward to the evening and hope that the pain is now under control. Steve helps me shower as normal as the simple things in life can be difficult and my arm has to be kept dry so I look like a chicken drumstick with my cling film on. Dressed and all ready we head off to meet everyone but my mom and Steve are worried about how I will cope. I have agreed that we will leave at 10.30 as I also don’t want to be in pain all night again.

Tony with wife Debs
Tony with wife Debs

As we pull into the Lawnswood car park the first person I saw was Tony Dalloway and his wife Debbie. So pleased to see him after so many years, hellos said we head inside. Now I could write a novel on the evening alone. The laughs the memories and the shared joy of just being with everyone, plus the fact that I had made it there with the day of pain that I had endured, I was just so pleased I had made it, I can’t tell you how pleased.

Dorothy Goswell came, another ex boss who taught me so much and even with her own health problems she pushed herself to be with me, thank you Dorothy. Norma who I have spent many a happy hour with in pot wash on a Saturday afternoon, whilst we worked with Dorothy at Debenhams. I didn’t get a photo of us together, so next time hey Dorothy. Everywhere I look I see familiar faces. Aunty Shelia, Jack and Daniella have come too, I miss my cousin Nicky and Karl but they are away for the weekend.

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Jen and Colin who say prayers for me every week at the Methodist Church on Stream road with Nicky and hubby Keith.

Even Nicky’s Mom and Dad are there and they don’t do pubs at all also this is a massive compliment. So many school friends have turned up it overwhelms me as I was just so happy to be with them. I turn around to see Sarah Mylam walk in OMG and she doesn’t even do Facebook but reads the blog daily. Thanks Sarah as you look amazing with all you have been through.

Nicky has got us all tables around the corner so we head there. Steve tells me to sit down every 10 minutes throughout the evening as he has seen the pain of my day and to others I must have looked so well and he was just being over protective, but he knows my suffering. I felt well, the excitement of just being there kept the pain at bay.

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Hilary, Me, Louise, Wendy and Sam

We all laughed hugged and talked for the next two and a half hours. Karen and Hilary had also brought their daughters and it was lovely to meet them. Karen brought me a bag of goodies which turned out to be biscuits but OMG so good, Borders and Thorntons, they will make me smile every morning. Tammy brought me a gift, so lovely to finally also have a hug from you after all these years. I said I hoped it was a vibrator as she said it would help me and Steve. It turned out to be an old fashion service bell which now is in pride of place in the chemo gazebo. Hilary and Louise have agreed to bare their bums for the calendar. So I show them a shot of Steve that I had taken the day before to give them inspiration and ideas. April arrives with her man, Nanny Jan and husband Dave turn up again not expecting that as pubs aren’t their thing either.

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Simon, Sarah and Me

Simon arrives and I haven’t seen him for 30 years!

 

 

 

 

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A true hero, JR who stood up for me to stop the beatings

He came with Jimmy Ross. Now he is the JR in Saturday’s post and after all these years I finally get to say thank you to him for protecting me from being beaten up by DY all those years ago. One of my heroes and I also introduced him to my daughter who was impressed that she had met one of the men that tried to save me. Aunty Cynthia and my Uncle Phil turn up with more goodies, Keithy Cox and Neil Stanway also arrive, Neil wanted to buy me a drink, we had stopped at a cash machine en route and I’d taken out £100 to buy everyone a drink but I never spent a penny all night. Not bad this cancer stuff hey, well the truth is I only had one lemonade and lime all night as drink is now off the menu completely with the drugs I take.

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My Jordan :-)

Michelle arrives and it’s so lovely to see her and I finally get a hug from her as we talk via messenger a lot. Jordan and Andy (her dad) come too, Jordan is very special to me, long story but she is the one that finally brings tears to my eyes as she has suffered too much in her little life although she is happy now and I am pleased for her but the pain of her losing her mom is always there for her and Alistair her brother.

So after hours of chatting and of course talking about the blog which they all love it’s sadly time to go as the agreed time has come. I start saying goodbye and joke that I’ll be bald next time we meet. As I make my way through everyone I look back and see Louise sitting in silence, miles away in thought, she looks so sad. We had just spent hours laughing but now she is sad, I wish I could read her mind. I catch her eye and say ‘no tears’ and she smiles back but I can see how upset she is. I didn’t want to leave you all, it was so precious just being able to laugh, talk and pick daisies with you all. It was also lovely for Steve and Rebecca to meet you all too. I can’t tell you how much it meant to me that you all made the effort to come and join me that night.

We return to my mom’s and I’m still okay and the pain is under control but Steve is now worried that I’ll not be able to cope on Sunday and that the raging pain may return. We head off to bed with morphine taken and again I sleep but I wake after two hours and head downstairs to take more painkillers. I won’t bore you with stories of another night of endless pain and drugs.

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I finally meet and hold Jacob

Sunday we travel up to Burton for Sophie’s 5th Birthday Party. Now taking so much morphine and co-codamol makes you constipated and I have only been twice in a week, my stomach has started to swell and take on the look of a bouncy castle again. So the cancer pain is fine and now I have to deal with wind and bloating. My stomach is so big by the time we reach Burton I have undone my skirt. We spent a lovely two hours with Steve’s family and the lovely Sophie. We finally got to meet Jacob and I gave him his afternoon bottle :-) thanks also for the coffee Andrew, you know me well.

Mrs Tut Tut and Jacob
Mrs Tut Tut and Jacob
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Rebecca and Jacob
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Steve and I with the birthday girl

We head off back to Wycombe at 2.30, pain still under control with drugs but I’m burping all the time. Steve says that it’s laxatives for me when we get in, I try to argue against this as the new chemo is supposed to be bad for diarrhea but he is not listening and when we return I have to take it but I am secretly glad too as it’s uncomfortable. We stopped for a coffee at Warwick, I head for the loo with Rebecca and my ‘Rosie and Jim’ style walking stick this time. I bump into Tina Farmer, she and Ray are from Wycombe. I haven’t seen her since I have become ill so it must have been a shock for her to see me coping with a stick. You never know who you will bump into hey.

Molly is very excited that we are home. We unpack and Steve and I sleep again and when we wake mom has arrived. She is down for the week due to new chemo starting. Bless her as I won’t have to worry about Molly having her walks or the ironing all week, thank goodness for moms hey.

After curfew and ‘wack a comment’ my favourite game we head off to bed with morphine taken I am hoping for sleep. I manage half an hour and then I have to get up because of the pain, Steve won’t sleep unless I’m asleep and I can’t have him awake with me all night, so up I get and downstairs I go so that Steve can sleep as he has work in the morning. I took 2.5 ml of morphine 1/2 an hour ago so I take the other 2.5 ml that’s the allowed dosage. Still the pain rages, at 3 am I can take neurophen so I take that and still the pain rages. At 5 am I take 2x co-codamol and still no release, at 5.30 I take 3 ml of morphine and still I’m in pain. Now by 7.30 when Steve wakes up I’m just mentally and physically too exhausted but at least help is coming today with an appointment this afternoon with the Ian Rennie nurses. Steve asks a very important question “who is in charge of my pain?” Well who is, a great question, he looks it up on the internet and gets nowhere so we agree that I’ll ask the nurses this morning whilst I’m having chemo. I finally sleep until 9.45 and I have to be at the hospital for 10.30 so I get changed and pack in two coffee’s and two fags before mom and I set off as I want to be on my own during treatment and get some project work done.

This post is getting too long to go into more details of the wiggy woman the people I met on the Sunrise ward and what happened so I’ll write about it tomorrow as you are all probably bored by now, got cold bums or winkled skin.

But just to let you know that Steve picked me up to tell me that the Ian Rennie nurses had been in touch, that it was too late to see me today but were coming tomorrow. Now Steve has had a long chat with them and he has high hopes of help at last but I’m really angry as I face yet another day/night of lonely pain which will just not go away. How can they be so busy when they arranged the appointment?

On a lighter note the chemo side effects are easier, I just have to carry around a bum bag of drugs connected via a tube in my arm for two days and just a few anti sickness tablets to take.

Thanks to Rita’s sister who, whilst Rita has been on holiday has covered my prayer list. Thanks to Mary Poppins who today sent me a TENS machine and I thought this was fabulous as even I didn’t know I was pregnant, Steve will be pleased :-) and finally all of the wonderful messages I have received both on the blog and privately about abuse. Was it the right thing to do to put it in the blog? I think on balance yes, as so many suffer in silence, so much hurt and pain out there and the LC mentioned in Saturday’s post is going to use the post in her counselling session to help others going through domestic violence as she knows the story is true cos she was there and saw some of it and because it may help others, mission accomplished I think.

They say there is a book in all of us in terms of life experiences and suffering but most people just hide it away.  I did for 30 years until Steve changed my life cos he believed in me and gave me the courage to face my fears. We all need a Mr Wonderful in our lives hey.

 

Abuse – Part 2 Sexual

Sexual abuse is much harder to write about as with any abuse it opens up scars and wounds that are better off normally left alone. But ‘warts and all’ here is my story.

I was one of the youngest in my year’s intake and therefore I left school at just 15. I applied for a job as an Audiologist at a Hearing Aid Centre. It was also a video shop next door run my the same man. My duties were to be between the two shops. The owner (we will call him Mr E for short, E for evil) was the owner and he had 3 shops in the Midlands. At first he was lovely, he told me he would teach me Audiology and Acupuncture. Everyone was so pleased for me as I had left school, got a job, which also had career prospects, and the wages were £36 pounds per week, which at the time for a first job was amazing to me. He was really nice and gave me study books to learn from and included me in all appointments, I had a white coat to wear too like a doctors so I felt special, medical even. I soon got to know the others who worked at the other branches via the video side of the business and I was both shocked and fearful as he seemed to sack people quite easily and normally just before they came up to their first years service as after that they had employment rights, or so the rumours went.

Sex abusers prime their victims; they start off slow and subtle with maybe just an arm around you, telling you what a good job you have done. The odd hug of appreciation that lingers too long so you feel uncomfortable but there is nothing really that you can complain about. They then put you in a position of power, so that you feel important. They make you feel special, buy you gifts, take you on trips and although you know it’s not right you just keep telling yourself that they are just being nice and that you are being silly with your concerns.

It was a long time ago and I can’t remember when or how it turned sexual. I know that it was awful; I was ashamed and felt dirty again. But what could I do? With friends and family proud of me, who could I tell? As the person being abused because no one knows about it you also pretend it’s not happening. You try every trick you know to not be alone with the person. Anything to avoid it happening again, from pretending to be ill to lying about appointments due into the shop. But the abuser becomes a master of their art and the manipulation and threats make you fearful, so you just submit as no one knows. So I put up with it until I could find a way out that everyone would believe. I used to count the takings from the 3 shops every week and I was in charge of the banking once I had sorted out the staff wage packets, I was only 16! I would steal from him every week, not because I wanted the money but because I wanted to hurt him as much as he hurt me. Months and months of this went by until I finally decided to leave and become a hairdressers receptionist. I can’t remember the excuse I made to my family and friends but I had to get away from this evil man. He had a girlfriend called J and she had a niece and nephew. He was divorced and I often had to meet her and pretend that everything was okay. I wondered if she knew, I wondered if he was doing this with the others that worked for him as so many in the months that I was there were either sacked or left. Were they sacked because they wouldn’t let him abuse them? I often wondered. And the ones that left, did they go because they had more courage or sense than I did?

Years passed and I told no one. Then I met my best mate Nicky who I told for the first time when I was 18. I had hidden the abuse, the dirty feelings, the disgust within myself for years. She was shocked but it was good to talk about it. I also told my boyfriend at the time who wanted to just go and kill him. By 18 my own sexuality was at rock bottom, no confidence and I was scared to do anything, my boyfriend used to call me frigid and I was.

After first meeting Steve and him being so devoted to us from the start I remember telling him that I’m not the person that he thought I was, that he didn’t know the real me. Again if you have read yesterday’s post you will know how I built a wall of confidence around me. People saw a confident, sometimes flirtatious, self opinionated, energetic woman who was self assured. They didn’t see the real me. The me I hated for the early years of not being strong enough, the dirty, disgusting me who I viewed as no better than a prostitute as I had stolen money in revenge for sex.

As time went by and our relationship grew the more I opened up to Steve and I told him about the abuse. He said that I should report it. I thought that he was silly as it was from when I was 15. In the days that followed that conversation played on my mind, should I report it or would they think I was either lying or silly to even say anything after all these years. I remembered Steve’s words of encouragement when reading in the local paper about a swimming instructor who had been abusing his pupils. So with Steve’s support and whilst the kids were at school I phoned the police. I told them my story; they said that the department was busy and that someone would call me back within a few weeks. I was happy with that and continued with my day. Within half an hour the head of the CID was on the phone to me. Four other peoples’ complaints against him were being investigated at that time, they said that his abuse spanned over 40 years of children and young adults. In his earlier years he ran a Judo club where he had access to young children. He also abused his niece and nephew, which J must have known about as she gave him access to them.

A policewoman came round that day to talk to me and they arranged for me to give video evidence at the police station. I went of course and gave my evidence. I drew a map of the shop, with details of his underground safe were he kept rude photos. I was asked if I ever said no to him. This was a hard question to answer honestly as in my head every time it happened I was screaming, ‘no no no no no.’ but did I ever say it? No I don’t think I did, not out loud and I couldn’t bear false witness so I just told the truth. After the interview I was told that sexually I was still classed as a minor until I was 18 years old. More importantly the policewoman who I never knew the name of said something to me so powerful that it changed my life. She said “YOU WERE NOT WRONG, YOU WERE WRONGED” I have never forgotten these words and I started to finally forgive myself.

Mr E was arrested on my evidence and he faked a heart attack, he got a top specialist to deem him not fit for trail and he has never faced justice for all the lives he ruined. Now where’s the justice in that? One of his shops still continues to trade and he is still free to do whatever he wishes. The bastard.

So there you have it ‘warts and all’ If you have suffered any form of abuse you will understand and connect with the honesty in this post. I’m sorry if anything I have shared with you has made you sad but like illness, abuse either physical or sexual, you are not alone and you can forgive yourself.

We all have choices in terms of how we deal with life experiences, don’t ever let yourself be a victim, take control and learn to love yourself for who you are.

My final comment is to thank Steve for his support, love and understanding through this. He has allowed me to be me, he encouraged me to take control back and be the person I always wanted to be and not live feeling ashamed or disgusted with myself, thank you my Mr Wonderful xx

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Abuse – Part 1 Physical Abuse

Abuse!

I have been toying with whether to write about abuse or not for ages. I talked to my chemo buddy Karen and asked her opinion and she said that it didn’t belong in a blog about cancer.

My blog however is not just about cancer, it’s about life, and I have shared so much of myself in the blog that I know it wouldn’t be complete without it.

Abuse both physical and sexual are only things we share with people very close to us, people we feel safe with. So why put it in the blog? These questions have been troubling me for ages.

The truth of why it’s going in my blog is that I believe that the life experiences we have are what make us the people we are today. You have to choose whether you become a victim or not. You choose your reaction to everything in life and therefore when bad stuff happens, and it does, you have to find strength from it.

If I didn’t address these issues in my blog then it wouldn’t be complete.

If you have ever suffered from abuse in whatever form you will connect with my life experiences, if you haven’t then you choose whether you want to continue reading. But if you continue reading then ask yourself, have I ever bullied or abused anyone? If you have been the abuser you may just learn what damage you have done and change your behaviour accordingly.

I have only used initials in this post for the people concerned but they will know who they are.

I was 14 years old and my childhood had been wonderful. I thought that all men would be as decent as my dad and although I had seen bullying at school I like many others hadn’t stopped it for fear that I would then become bullied too for being brave. Looking back I was a coward to not stand up to bullying but when at school you don’t have the life experiences yet to make those decisions, or is that just an excuse?

I had wonderful schoolmates and we all hung out together. Through these friends I met DY, he was lovely, handsome and funny. We were attracted to each other instantly and when he was interested in me I was of course flattered.

We started dating but without the formal ‘we are a couple’ and great times were had in the gang of school friends from the Buckpool School and Crestwood School. I went to the Crestwood School.

LC lived in Wordsley and her mom and dads’ house had a big conservatory, which we used to sleep in, all girls together enjoying sleepovers. One night JR, SR and DY came to join us. SR went out with MC and they later married, LC went out with JR, but they didn’t end up married. DY came to sleep with me, I didn’t know why they had come that night and I wasn’t prepared for what they had planned either.

Sparing you the details I ended up with him inside me, I remember thinking no no no but I have never been told about empowerment, that you could say no and that you didn’t have to just do whatever anyone wanted to do to you. I do remember the smell of his jacket; cheap leather and fags, the smell made me want to be sick and I can still smell it today when I think of it.

I went to the toilet and felt like my insides were going to fall out. Ashamed and embarrassed I felt dirty but who could I tell? My friend LW at that time was sexually more advanced then me. She used to talk about oral sex which I thought was just disgusting and I would always leave the room when she started talking about it, she was so confident she would maybe think I was being silly, so I said nothing to anyone.

Following that night I didn’t know how I felt, about DY, sex or anything really, just confused and alone as who could I tell.

My mom and dad at the time had joined an American Square Dancing Club and they went out every Thursday night. DY came round my house one Thursday evening and I begged him to leave, I didn’t want my mom and dad to find out that he had been there whilst they were out. He wouldn’t go. We were outside the front of the house and I kept on and on telling him that he had to go but he wouldn’t go. I got more angry and started shouting at him to leave. He hit me in the face. I don’t really remember much else about what happened next, I just recall knowing that I didn’t want to be hit again and that it was over between us.

During the following weeks DY would sneak around the back of my house into the garden and throw stones at the window to wake me up. He wouldn’t leave. He said that if I didn’t agree to go out with him then he would tell my mom and dad what we had done together. I couldn’t face that so I agreed to go out with him again as along as he left our house and me alone.

The second time he hit me it was worse. We (as in the gang of school friends) were round a friend’s house on the Blandford Mere Estate listening to music in the bedroom, I remember listening to the Jam. He came round and in my friends bedroom he started calling me names and kicking me, just tormenting me, bullying me. It got too embarrassing and so LC, MC, SR and JR and I decided to leave. There is a park on this estate and as we walked through the park out of the bushes came DY with a big stick. He ran towards us so we ran away but he caught up with us and swung the stick at me, I turned as it came towards me and he whacked me across the back, I fell to the floor. JR and SR chased him to stop him and us girls just tried to get through the park to get back home to safety. We saw the boys running after DY as he tried to get to me again and again, but they protected me.

The third time he hit me I can’t remember the build up but I was walking through the alleyway behind the church in Wordsley with MC, the church where both my sister and dad are laid to rest. I had a postcard and 50p in my hand. DY had followed us and had remained behind us calling me names, he wouldn’t stop, I had had enough and I remember dropping the 50p and the postcard and trying to land a right-handed punch on him. He was stronger than me and the beating started, he got me onto the floor and repeatedly kicked me in the head. I remember losing consciousness and coming round to him leaning over me and saying “oh my God, what have I done” and them he continued to kick the hell out of me. MC was helpless to stop him. Eventually I got home, blouse torn and covered in dirt. I decided to tell my mom, not all the details but just a little of it. She said not to tell my dad, as he would kill him.

I was scared after that to go out anywhere in case I saw him. Frightened of more beatings and name-calling. He had moved on though and sometime later I heard that he had gone to prison. I was so happy as I was free to walk the streets again.

Years past and I didn’t see him; I had heard that he was out of prison and living in Wolverhampton. Again a long way away so I was safe, or so I thought.

The Kingfisher nightclub had become a regular venue for great nights out with friends, I loved to dance and would spend all of my time on the dance floor, dancing around my handbag with the occasional fag and drink nearby I would spent hours just enjoying the music and dancing freely. One night I was there as normal and I saw him across the floor. I was in the smaller part of the venue called Piranha’s at the time. I froze, oh no what was I going to do, why was he here, would he attack me again? I panicked and headed for the toilets, I would be safe in there.

I eventually came out of the toilets to find him waiting outside for me, he reached out to touch me and I recoiled, as I didn’t ever want him to touch me again.

He just looked at me and said “I’m so sorry for everything I ever did to you.” He turned around and left me standing there completely gobsmacked at his apology and him even being there as I hadn’t seen him in years.

The next day I was shocked to read in the local paper that he killed himself that night.

So there you have it, my first episode or experience of abuse. Physical abuse has bruises or wounds that can be seen but verbal abuse leaves different scars. It affected me in my ability to deal with men being angry or shouting at me. I could never cope with this and I still struggle today.

I remember being at school in a lesson and I wasn’t listening as normal, the male teacher stood over me and shouted, “look at me” over and over again. The angry in me raged but I couldn’t look at him for fear of what he might do to me. I eventually stood up and shouted, “fuck off” at him and ran out of the classroom. My school friends must have thought this was a cool thing to do not knowing the fear I held inside.

I have been bullied at different times throughout my working life and I was never really strong enough to cope with it or fight back. Bullies don’t grow up and change, normally they just get older and continue there bullying behaviour. But sometimes you can change a fearful situation into a positive. When I first started in Kingston, Troy and I had a verbal argument and he whilst shouting “I’ve had a fucking enough of you” threw the store keys at me. Once we had sorted out the issues and calmed down I told him of my early abuse and that I can’t cope when men shout at me. He understood and promised me he would never shout again, and he kept to his word. There are lots of decent men out there too.

My Steve can shout and although he doesn’t shout at me there has been many occasions when he had to shout at the four kids. I remember once him shouting and I hid in the laundry room in the house with three loos in Pedmore. Scared but again just fear from my past haunting me again.

So warts and all there it is but it’s important for you to understand that the confident over bearing, energetic, overpowering, self opinionated woman I became has come from a scared girl who chose not to be a victim and hid the hurt inside.

I was this person, as I didn’t want others see what the fear of abuse had done to me, the mental scars that it leaves you with. If you have suffered abuse some of my story will make sense and bring back your own fears and I’m sorry if this is the case. However it may just make you realise that in either illness or abuse you are not alone and if my story helps just one other person to realise that how they feel or have felt is perfectly normal then I have achieved what this post was meant to achieve.

‘Warts and all’ our life experiences make us who we are. Don’t be a victim, fight back and take control, that’s what they should teach at school. I lesson I had to learn for myself.

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Prayer list for tomorrow Rita:

Karen and Frankie. Guy’s son following his operation. My loved ones for strength and peace. People in physical pain who can’t sleep at night and finally all victims of abuse. Thanks Rita xx

All mucked up!

Steve has been wanting a new pair of jeans for ages but with me being ill we haven’t been able to get to the shops. So the plan yesterday was as he finished work last night at 6 pm to go into Wycombe as it’s late night shopping, pop into M&S get some jeans and return home within the hour. This was all good but I can’t walk any distance very well without my ‘Rosie and Jim’ style walking stick but at least the stick keeps me upright. We park and although it’s a short walk which pre cancer days Steve would have been telling me to slow down, it was a very long walk for me. We slowly but eventually got into M&S and went to menswear, the escalator ride up to the 1st floor was a welcomed break from walking. Jeans chosen we head for the fitting rooms. I sat waiting for the fashion show in the male fitting rooms. There where two assistants working, well I say working! As I sat waiting for Steve they just made me so mad. They discussed their uni course, how many would be at their lectures and could they miss them without being noticed. They didn’t talk to me or offer any help with our purchases, even though we were the only customers. They fannied about pretending to sort out shirts and then the young lad slowly decided to do some returns but did he take the rail? No he two two shirts off the full rail and slowly walked away saying to his colleague that there were lots of returns for that day. I sat watching them. All they saw was a middle aged women with a walking stick, looking a bit shit if I’m honest. They didn’t see the woman who worked for M&S in Oxford Street who used to do walk rounds with Stuart Rose, they didn’t see person that is committed to service, they didn’t see a retail career spanning years of experience and the manager that would have put a foot up their arses had they had been on my shift.

Jeans sorted we head for the tills and leave the two uni students to it but boy did I want to give them some feedback! The man serving Steve at the tills had a limp himself and he was straight away there to ease my pain, showing me where the lifts were and just being very helpful but why is it that it takes someone who has obviously had health issues to be kind and thoughtful to another obviously struggling person? Easy to answer, because they know how hard it is to get around and do the simple things in life. Maybe everyone should spend a day as a disabled person in retail as part of their training to really understand the plight of less able people.

We return home but the trip has taken it’s toll on me and normally at night although I can feel the pain ranging anywhere from discomfort to agony the normal painkillers are not taking the edge off the pain. I try so hard to keep my pain out of sight from my loved ones but last night it was plain to see again. Steve had run out of drugs to give to me. I assured him that I would be fine and to not worry. He went to bed leaving me to do my favourite game of ‘wack a comment.’ I assured Steve that I would only wait up until I could take my next lot of painkillers and then take morphine and come to bed. This I did but it didn’t ease the pain. I tried to sleep at 1.30 after a final goodnight from Jani (from Beating Bowel Cancer) I tossed and turned and tossed and turned, I tried every position to ease the pain. I tried mind over matter and for the first time I even tried praying for relief from the pain. I gave up at 3.20 and came back downstairs, more painkillers and morphine taken I return to try again. and wake at 7.30 with the pain easier, thankfully.

So not the usual morning routine now as Rebecca was up before me and Tia the ungrateful one is nowhere to be seen as she has had her breakfast already. Molly is still asleep as normal and doesn’t even wake up to say hello or for breakfast, lazy dog. So I feed the fish and take painkillers followed by 1/2 biscuit, coffee and a fag. Rebecca kisses me as she leaves for work and we both discuss the visit of Stud Muffin, as we are both so excited for him to be with us later on in the day.

Dentist at 10.20 where Steve drops me off as near as possible and I with the aid of my ‘Rosie and Jim’ style stick I manage to walk the rest of the way. He repairs the back of my tooth where the temporary filling fell out. Steve picks me up and we head to Morrison’s as they have a photo booth machine in store and it’s easier for me to get to rather than struggling to get into Boots in town. Typical as the machine is down the other end of the store but that’s okay as they have wheelchairs available and Steve for the first time pushes me in a wheelchair to the machine. Photos done I can now apply for a disabled blue badge (Jo will be pleased at this news) and renew my driving license. On the form to renew my license there is a tick box asking if I want to be an organ donator, Steve says that no one would want mine now and we both laugh and I say that’s so going in my blog!

My PICC line
My PICC line

Back home for a quick shower as I have to be at the hospital for blood tests at 1 pm. I haven’t shown you my PICC line so here’s a photo for you. I have to go through the side effects of the new drugs I’m having on Monday and an appointment has been made for me to see the wig woman. You get one free wig so I agree but with a very heavy heart. Some people don’t lose their hair, everyone is different: for some it just thins, will I be a lucky one I wonder?

 

Back home I now only have an hour to rest before ‘Stud Muffin’ comes but I can’t sleep as the pain in my groin is too bad, I can’t lie down so I opt for painkillers instead and just hope I can cope without sleep.

The 'Stud Muffin' himself :-)
The ‘Stud Muffin’ himself :-)

Here is the famous chemo gazebo shot for you. I think Rebecca, Stud Muffin and I look happy but feel Richard has lacked effort lol. We spent a lovely hour together chatting and catching up but don’t worry Pete as the ‘circle of faith’ is strong within me and what’s said in the chemo gazebo stays in the chemo gazebo 😉

 

On to great news as thanks to Les and Pat, Jackie Prior and some anonymous donations yesterday and today, the grand total raised so far is £2505!

Due to all the sharing done everyday by you lovely lot, visitors to my blog have gone over 45,000 and we have had over 5500 views of the Cancer Free video between you Tube and Facebook. Thank you all so much.

So it’s still Nando’s tonight but sadly without the ‘Stud Muffin’ as he has to go to a stag do in Croydon, watch out girls in Croydon tonight!

The next two day’s posts are already written but they have been so hard for me to write about and you may not like the content but I will be back with you all on Monday after my chemo treatment for an update on my mad weekend planned in the Midlands with friends and family. Enjoy your weekend whatever you are up to and if you are in the Midlands and want to join us in the Lawnswood Pub in Wordsley on Saturday night from 8 pm that’s fine as anyone is welcome. However it’s family only on Sunday for the beautiful Sophie’s 5th Birthday Party and definitely no booze there! Speak to you all on Monday.

 

Contact at Last

So after a lovely 2 hours sleep yesterday Steve woke me as I was expecting Mr Grey and Elaine. I quickly finished yesterday’s post and with final edits done by Steve I hit the publish button on my laptop. Within about 30 minutes my mobile rang and it was a no caller ID but I answered it as sometimes it’s the hospital or if it’s a PPI call I have great pleasure in informing them that my number is on the TPS list and their call is illegal and I will report them. Which of course I can’t as the bastards have got round the law by phoning from another country. But it was neither, it was a call from Tessa, she is from the Rennie Grove Hospice Care foundation (never heard of them) following my referral from my GP. Wow I thought finally we are going to get some help.

They want to come and see me at home but they are so busy they can’t come until Monday (good job I’m not urgent hey!) But Monday is the first day of chemo and therefore we have arranged for them to call me in the afternoon but agreed that I may not be up for visitors on that day. So I’m almost there with help for my hubby drug lord and getting some help as we sail through this mad ocean in our lame boat with my broken outboard motor with no spare LOL. The journey of odd named drugs, side effects and understanding of the process. Palliative care is not a name I like to use as for me it implies the end of life but as Rita warned me yesterday, “don’t you give up fighting girl or I’ll be back to knock some fecking sense inters you both.” God love her.

So there you go, all you need to get help is to have stage 4 cancer, be in agony, 4 referrals, two 3 trips to your GP, too many sleepless nights and a follow up phone call from your GP and you can finally get someone who may be able to see you in 5 days time, marvelous don’t you think? NOT!

IMG_4336Steve was due to finish work at 8 pm so the plan was to have steak cooked in my outside oven once Mr Grey and Elaine had gone. They were running late as they had to put a Spectacular Event on at work but they finally arrived bearing birthday gifts :-) They brought me a fleece throw and a V shaped pillow for my chemo gazebo, which I was delighted with as I was going to get a fleece blanket for when the weather changed and also brought me a ‘Mont blog Pen’ it’s a private joke and we all laughed, excellent presents. The photo is a little grainy but it was late and in poor lighting in the famous chemo gazebo. Elaine was disappointed in the chemo gazebo, she had images of a grand design not a £20 one from B&Q, sorry Elaine but with your design and arty farty skills you could always design one for me :-)

Mr Grey, Elaine and I were part of the Uxbridge new concept store opening along with Ruth, Ged and Brian. We had been through some interesting challenges together and remained friends ever since. Rebecca was upstairs but after they had gone she said she could hear the endless howls of laughter coming from the garden. We had a fabulous hour together, thank you Mr Grey and Elaine.  I did ask Mr Grey when were we going to write 50 Shades darker to which he laughed due to his lack of experience, but this maybe I project I will start but probably with another man for the male perspective, any volunteers???

Steve and I really enjoyed our steak, new potatoes with peppercorn sauce but I wasn’t hungry. For the last two days I had only been eating twice a day. Apart from the endless Celebration chocolates that I have been consuming but you can’t count chocolate can you LOL? I knew why I wasn’t hungry and I had to confess to Steve. My stomach had become very bloated and swollen, not due to the tumours but because I hadn’t been to the loo for 3 days. Now pre cancer days I could go a week or more without going, without a worry but following a 1/3 of my bowel being removed this was extremely strange for me indeed. Steve went straight to the medicine cupboard and pulled out the box of laxatives, oh the joy of life hey! The liquid was orange flavoured and I gagged as I tried to drink 125 ml. Yummy pudding following a sensational steak! My stomach started to make funny noises and I become increasingly uncomfortable but at least it wasn’t due to cancer pain for a change.

I wanted Steve to get a decent nights sleep as if we go up together he just worries, if we go up separately he still worries but if he goes first then he will eventually nod off. So alone I sit and reply to all my lovely messages to you all. I then start to convert the last 10 posts into the 2nd book which I was going to call ‘Pushing Up Daisies’ but I think the title lacks hope so if anyone has any ideas for a better title for the second book please let me know. I also copy the comments left on my blog as your words are a trail of love and support that I don’t ever want to forget. However I did tell Rita that her comments alone could become a book, God love the bones of her, as Rita would say.

So it’s midnight and things start to move, if you get my drift, I was thankful of the relief, constipation is a known side effect of co-codamol and morphine. By 12.45 I take another dose of painkillers but by 1.15 am I was tired but equally knew that I was in too much pain to sleep. I took 2.5ml of morphine and slept comfortably until 6 am, wow! Excellent, but not for Tia the ungrateful rescued cat who has got used to breakfast being anytime from 4 am. Usual routine of now feed ungrateful cat, painkillers, 1/2 biscuit/Celebration chocolates, coffee and a fag and I’m ready for my day.

I’ve planned nothing for my day today and following two sets of visitors and the hospital visit yesterday I need a restful and peaceful day. I plan to get some project work done and the pre write two posts for the weekend as Saturday and Sunday I am visiting the Midlands and my promise was a post everyday so what to write about in advance? You will have to wait and see hey.

Super Cute Molly Moo
Super Cute Molly Moo

Molly joined me in the newly pimped out chemo gazebo gifts from yesterday. Doesn’t she look cute hey. I spot a squirrel and quickly grab my phone to record the cheeky bloody thing but he was too quick for me. There is only one ball left in the garden for them to pinch so Molly was also after the thief.

Steve was on the 10-6 shift today so he woke about 9 am and we sat chatting as we always do. I am going to get stuff sorted today. I firstly rearrange the missed dentist appointment from the other day for tomorrow and then I call the M&S and Arcadia pension funds to find out what would happen in the event of my death and who I have nominated as my beneficiary. I am shocked at how much I am worth dead. The government changed the law recently and now if diagnosed as terminal you have the option to release your pension early but you do have to pay 25% tax on it, which is fair enough as you don’t pay tax on it when you save it. So that gives us options if we have to face that.

Now I’m hungry and cook a sausage and cheese sandwich for us plus two extra sausages to be shared between Molly and Tia. I take another lot of painkillers and fall asleep, the next thing I know it’s 2 o’clock wow where did those hours go? But as I wake up I am an hour late with my other painkillers and my back is in two with pain. I take more drugs and have a coffee whilst my wonderful hubby rubs ibuprofen gel into my back. I then receive a call from Leanne who is from Beating Bowel Cancer. She has arranged an awareness day in Wycombe for Saturday 26th September and we discuss this event plus much more over the next hour. Beware my friends in High Wycombe as I will be shamelessly asking for help on that day, or you could just volunteer to save you from my begging phone call 😉 #justsaying.

I have to say a massive thank you to Julie Davies for her donation, she is the Store Manager at BHS in Walsall, or if you come from the Midlands we call Walsall yam yam land, a term of endearment honestly. Thank you to the anonymous donor too but I wish I knew who all the anonymous donors were so that I could say a personal thank you but I do respect everyone’s privacy. I also received in the post today a lovely hand knitted blanket which someone took a lot of trouble to make for me. The package had split open and the post office had done their best to get it to me in one piece. The only clue I have is from the tracking number which states that it was posted from Milton Keynes, so however you are thank you. Plus I had a lovely letter from Heather, who lives locally and again I appreciate everyone’s love and support.

Thanks to everyone who has been outraged at the lack of support we have received from Macmillan. Tweets and emails to them have just resulted in them asking us to phone their general helpline number. We haven’t done this as we now have support coming from the Rennie Foundation, following the GP following up on this for us. From Beating Bowel Cancer who are super supportive, as always and I also received an email from our local hospice where I attended counseling the other week with offers of help, So Macmillan can forget us phoning them again as I think we have asked more than enough times for their help. If they can’t even call us then forget it as any help now would seem false, forced and empty.

Now tomorrow is an exciting day for me as the ‘Stud Muffin’ himself, Uncle Peter is coming to visit. He is in England for just a few weeks before returning to Australia. He is the policeman in the Cancer Free song and following his brain surgery and all the worry over his health I am so looking forward to seeing him. With pain now more under control we are taking him out for dinner. Richard I hope will be able to join us in time. So tomorrows post will have to go up early so that I can spend some lovely, long overdue time with him and my loved ones.

So I’ll leave you all for today and catch up with you all tomorrow xx

 

 

Picking Daisies and PICC Line inserted

So after a good afternoon of sleep and being pain free, Steve finally has his wife back, well not all of me as we still find hugs hard, he has become very fond of ankle stroking as they don’t hurt. My left leg and right arm are okay and there is always my tits as they are cancer free but apart from those areas everything else is either sore or swollen.

Rebecca had been at work all day so she didn’t want to do curfew time and that’s okay. Steve and I enjoy watching a 1/2 hour funny and a game of MarioKart, I lost as normal. Now that I feel better I would love a beer but no alcohol on the new drugs so it’s lemonade and lime for me at 10 pm which we always used to call beer time.

After curfew time I try to catch up with messages from you all and it make me sad when I read that I’ve made you all sad. I never thought that anyone would be interested in reading my journey but so many of you not only read it but feel the pain too, thank you. I receive a donation from Simon Moss part of the BHS head office team, thank you Simon and it’s appreciated so much by me and the charity.

Now I told you that I work for an amazing company and look what Jacqui has done for me and this has been sent company wide. It brought tears as I read it. Hubby thinks it’s wonderful too. I know that Mr Muscles, Mr Bottom or HRH would have had to approve this going out to the entire company so a massive thank you to you too.  As it’s in a PDF format to read the text you just have to click on the image below.

Screen Shot 2015-09-02 at 08.02.39
Click to view full size (pdf)

So after a call from Nicky last night I take my final drugs for the day and head off to bed with Steve. Going to bed together is something we don’t do often and it’s so lovely. We cuddle gently and Steve is a constant source of love and support, I can discuss anything with him no matter how difficult the subject, my soul mate, the other half of me. He won’t sleep until he knows I’m asleep so lights out and I’m hoping for rest but no my body decides that’s not for me, bloody thing! The old ragging pain returns in my back, in my hip and down my leg.You bastard I think to myself, I’ve been fine all day, I’ve taken painkillers so why now? Why start again now? I can’t even lie in the bed it’s so painful. So at 1.30 am we are back downstairs for morphine and Linda’s pink fluffy hot water bottle. I record the dosage in my book and we head off back to bed. Steve is worried I know he is, he knows we are running out of options and I’m dreading the next round of chemo. He will always be there for me but the constant worry, being my nurse and drugs lord isn’t easy on him. We go back to bed and I tell him to sleep but he won’t and can’t rest, worry is a terrible thing that solves nothing. He whispers that he wishes he could take it all away for me and I actually just want to cry but this won’t help either of us so instead I just say “I know” we exchange “love you” and I pray for sleep to come not just for me but for him too.

At 5 am I’m awake again with pain. Tia the ungrateful cat is upset as 5 am is a lie in for me and she wants her breakfast. So animals fed, painkillers, 1/2 biscuit, coffee and a fag later I wait for the pain to ease. This reminds me, Jane when she visited the other day asked if the 1/2 biscuit was a healthy one? Gosh no way, me healthy? It’s always a biscuit of chocolate of some sort, this week I have two selection boxes to get through following BFF’s visit with her mom. Oh and there is always the Celebrations they brought too if I run out of biscuits. It plays on my mind that underneath all these painkillers the ragging pain is there, what is the bloody cancer doing to my body inside? It worries me as I feel new areas of pain now and I wonder why this is, is it he cancer in my organs or is it just the tumours growing and pressing on different nerves?

Rita was due at 10 am but due to traffic she now said she would be with us for 11 am so Steve and I had a sausage sandwich, lovely. Just before 11 am the door bell went and there she was, to all of you and me known as my angel. I opened the door and although I said I wouldn’t cry I did as I was just so pleased to see her. I think it would have been September BHS conference last year when we last saw each other (and slept together 😉 # justsaying! Reet Petite the finest girl you ever wanna meet was with us. Travelled for hours on a day’s holiday just to be with us, bless her. She brought wine, flowers and chocolates which I’m grateful for but not as grateful as for her just being her in our home.

The gown of shame!
The gown of shame!

A quick cup of tea and off we go to the hospital for my PICC line to be inserted. I put on the gown of shame and she shamelessly laughs at me and takes photo’s. I was shocked that the procedure would take about 40 minutes and worry about Rita waiting for me. I lie on the bed where Simon and his wonderful team do their stuff. I was worried about having this done but I didn’t feel a thing at all apart from the sedative going into my arm. I worried that I wouldn’t be able to smoke afterwards if my arm was numb but it was fine. As it was being done and I lay still I wanted to cry but I didn’t and Rita being there to make me laugh just helped me so much, thank you Rita for being with me today. The PICC line goes into the main arteries in your chest through a line just above your elbow. Simon said that he wanted it in my right arm due to the tumours in the left hand side of my neck. I asked if he had seen my scans and was he impressed with my tumours? To which he replied “I’ve seen bigger” bless him. Finally it’s all done and I return to Rita and get out of the gown of shame.

The famous Chemo Gazebo photo
The famous Chemo Gazebo photo

We returned home and I made Rita a salad for lunch, I did tell her that healthy food wasn’t any good for her but she is determined to loose another 2 stones for her own health reasons. We talked and talked, I could listen to her talk all day with her beautiful accent, wonderful stories and funny sayings. We exchanged the experience of losing people: her brother Liam, her mom and dad. What a wonderful childhood she must have had with 8 siblings in a close community in Ireland. She brought a donation for me from her sister Heather of £20. Thank you so much Heather it’s appreciated so much.

Me and my Angel
Me and my Angel

After hours of enjoy each others company she had to go, it’s a long journey and as ever I needed my sleep. I wept before she went I couldn’t help it. she has been such a comfort to me and my family over these past months. Rita remained strong and said that she would until she left us. I’ve just had a message from Rita to say that she is home safely and that she cried half way home. Bless you my angel.

All too soon she was gone, we waved her off and wished her a safe journey. I returned to my chemo gazebo and within minutes I’m asleep, only to be woken at 6 pm by Steve as Mr Grey and Elaine are due about 6.30. So I’ll leave you all there and update you with Mr Grey and Elaine tomorrow.

Happy Birthday to our nephew James, hope you had a great day.

Thank you Leah for my lovely daisy pin badge it arrived in today’s mail, love it :-) xx

Karen started her chemo cycle today and sending you big loves my chemo buddy and I hope to see you soon xx

Thank you sister in law Helen for tweeting McMillan, she did this as she was so angry. I have to report yet another day has past and still no contact from anyone even after 4 referrals and a GP follow up call. One of my comments last night left on the blog said that last year they received £215 million pounds in donations last year! wow that’s an amazing amount. They are at the end of the day only a charity and the NHS should have it’s own cancer nurses but you have to wonder where are they all?

No squirrel sightings today as I think Molly has frightened them off her remaining balls lol

Have a great evening and I will catch up with you all tomorrow as I’m off to pick more daises with Mr Grey and Elaine :-)

 

Help!

Last night to relieve the pain Steve suggested I have a bath. Loads of bubbles and music playing  in the background I lay in the bath and for a while there was very little pain, probably cos the water was so hot, almost volcanic! As I lay there Steve sat and talked to me and it was just lovely, water can be so soothing.

We had planned curfew time, Rebecca wanted to watch ’60 years of ITV’ so in P-jams we sat at 9 pm to watch it on catch up. The pain just won’t stop and started to build to acute pain, there was no let up at all. It didn’t matter what position I was in it ragged and ragged through my body. The pain was so intense I had been taking painkillers every hour. By 10 pm I hit the morphine, this didn’t work either, it was only a small dose as it made me sick before but Steve and I were out of options. By 11 pm I could take more painkillers, they didn’t work either so back to the morphine we went. I was drowsy now but still in acute pain. As Steve had work the next day he needed sleep but he didn’t want to leave me so I agreed to go to bed to see if I could sleep. I just can’t articulate how bad the pain was for 4 hours. My body had had enough, my mental ability to continue to cope like this was at breaking point and if I had the option I would have loved someone to just put me out of my misery, they would if I was a dog. So many times I just wanted to cry but I didn’t. I didn’t want Rebecca to see me like this at all, I could see the worry in both her and Steve. We just had to hang on until I could get to the doctors in the morning.

IMG_4325I managed to sleep until 4.30 when again the pain woke me up. I struggled downstairs, straight to the painkillers. Animals fed, coffee, 1/2 biscuit and a fag plus my hot water bottles and I sit and the pain continues to build again. I don’t want to take morphine without Steve being around. So I struggle on trying to cope, I try mind over matter, breathing through it but nothing works. Once daylight starts to break I move into my chemo gazebo to rest and hopefully bring some relief. It starts to rain just to add to the misery of the last 24 hours and continues to rain but I don’t move and Tia the ungrateful rescued cat takes shelter with me. The photo attached was taken the other morning but I thought I’d use it otherwise there would be no photo in today’s post. I know Steve has set his alarm for 7.30 and I am now checking my watch every 10 minutes hoping he will wake, I need help, I can’t stand it anymore.

Steve eventually wakes, I wanted to cry out loud “help me, please get somebody, anybody to help me” but I don’t I take more painkillers and Steve gives me more morphine. I was supposed to go to the dentist this morning at 8.30 but there is no way I would be able to go so Steve cancels the appointment and phones the doctors. Appointment made for 9.20. When you are in so much pain every sound or movement around you is felt. Every time Steve coughed or walked by me it travels through my body and I feel every wave of movement by him.

I manage to crawl upstairs to get dressed and the drive to the doctors was okay and bearable.  Steve drops me at the doctors’ door and goes to park the car. I hobble in with the aid of my stick and check in. Steve joins me and we are called through. Once sat in the chair with the doctor I just cry, through tears I say “we need help.” The doctor says that she can see that. She has given me stronger painkillers and given Steve lots of advice on morphine and the doses I can take. She is also shocked that I haven’t had any support or contact at all. She pulled up the referral form sent the previous Thursday and says that she will call them to get me some help, nothing yet!

We go straight to the pharmacy to collect my new drugs but all this makes Steve slightly late signing in for work. I am so glad that Steve can work from home and that his employers are so supportive and understanding but being late just adds another layer of pressure and strain to my hubby. My poor loved ones see so much pain and suffering and I know this is tearing them apart as they just want to help and take it all away for me.

Back home I take the stronger pain killers and go to rest in my chemo gazebo. I sleep, finally sleep. Molly wakes me as she is restless and it’s her normal walking time but I can’t take her. Steve is on his lunch break, after a coffee together he can see I need more sleep and leaves me. As he kisses me I cry, I can’t help it I just long to be normal to be part of life again without pain. I sleep again and wake to Amanda calling me following my email to her. I ask for 20 minutes to just wake up and have a coffee which she agrees too. More painkillers as I am again in pain, a coffee and a fag later she calls again.

Amanda as always is so supportive, I am truly blessed to be part of BHS where I can’t fault their support and caring for me. Amanda has been on this journey with me from the early stages and weekly calls for updates has been a constant form of BHS’s commitment to look after me in whatever way they can. Amanda tells me that I don’t have to work and I can be signed off sick, something that Doctor Williams suggested last week but my answer will always be NO as it’s so important to me to contribute in anyway I can. Amanda knows how important work is too me, to feel I’m still a valid member of the team that she agrees to let me continue with my project work, thanks Amanda.

So you can tell how bad I’ve been as I haven’t answered comments or many messages at all. I’m sorry and now that I have stronger drugs I will catch up with the backlog. I am grateful for everyone love and support, it means so much to me. Plus all the naked bum offers for the calendar.

I did have an email from Frankie last night as I have been worried about her, no contact for over a week but I’m pleased to tell you that she is okay, she has coped with her last chemo cycle without ending up in hospital. She is suffering with side effects but coping, Rita’s prayers are working :-)

Taking of Rita she is coming to see me tomorrow and I’m so excited, I may just cry all over her but it will be so lovely to see her. Mr Grey may also pop in and also Elaine from work. I was yesterday thinking I would have to cancel her as I wouldn’t want her or anyone to see me in a state but armed with new stronger drugs I am confident that I’ll be okay.

So apologies for the lack of contact, thank you all for caring and I will get through this shit but only through the love that I have from hubby, family and friends that I know are all rooting for me.

#squirrelgate – there has been no sightings today and Steve wants to set up a camera to film them as he reckons that sort of film footage would definitely go viral, not my naked bum and a great song but a squirrel nicking Molly’s balls would, funny old world hey!

Thanks to the donations from Emma from BHS Isle of Wight, the all the anonymous ones and a special thanks to Robert Bradley would donated £50. I worked with Robert in the 80’s and we have always kept in touch, just a Christmas Card every year and once Steve and I managed to visit him as we were at a political conference near Leeds and was able to pop in. All those years of friendship from a distance but never forgotten, thanks Robert.

And finally the ‘Stud Muffin’ himself has landed back in England :-) welcome back Peter if only for a few weeks and I hope to see you soon as you are always welcome but I may cry, #just saying xxx