August Bank Holiday

Last night when Rebecca returned home from a night out with friends to celebrate Josh’s birthday we watched X Factor together. The pain started to build again and as I knew I had one more dose of painkillers left I was hopeful of sleep tonight. X Factor over I joined Steve in the kitchen, he can see the pain I’m in. He fills my hot water bottle, I take my final painkillers of the day and he rubs Ibuprofen gel into my back to ease the pain. I tell him that I’m worried it’s gone into my bones the now the pain starts above my bra strap and goes all the way down my spine. Steve says that is just my nerves and that the tumours are maybe pressing upon them. Last fag together and I head upstairs at 1 am so surely I will be asleep until at least 5 am.

No not for me, I wake at 3.19 but I have been tossing and turning in pain for what seemed like ages. I can’t get up this early and I try to cope with the pain but I give up at 4 am and head downstairs. The pain is so intense that I want to grab every drug available and wash them down with 3 bottles of morphine followed by a glass of red wine, that should do it, but I don’t and won’t. I struggle to walk, my back and leg just ache so much. I manage to feed the cat and Molly, unusually she has woken up. One nurofen first whilst the coffee machine starts up, no 1/2 biscuit this morning it’s Malteasers, a gift from Jane yesterday and a handful of ibulieve gel for my back. Coffee and fag done I wait for the release of the pain to come, I watch the clock hoping an ease will come soon, which it does.

By 6 am I’m on the next lot of painkillers and gel on my leg as the aching is just so intense, I need help I know I do. I can’t carry on like this, the pain just gets me down so much. I think back to just a few weeks ago when I was coping, how fast things change with this shit disease.

I worry about my post being full of yet more pain complaints and self pity but that’s where I am right now, sorry.

As the pain lifts I decide to do two things, one send an email with my working hours to Amanda at work which I do every week. I also ask her for help on what my ‘death in service’ would be as I have to start to get things in order for my kids and family. Secondly I type up a list of my wishes should I die, this is for Steve as he worries that no one will know what I want done with my belongings, death in service money and funeral requests, so that’s now all done and it’s diverted the attention away from the pain at least for a short while.

Bank holidays in August were normally the last days of any annual holiday Steve and I had. Touring across Europe and beyond means long days on a bike and the journey home was normally just motorways as we sometimes spent an extra day wherever we were but the price was a boring two days riding to get to the tunnel. Fond happy memories which I treasure of me and my soul mate and the open road. I long to be that person again, to be pain free, to live without a care in the world apart from where are we heading to that today, looking forward to a shower and an evening meal and do we have enough beer for the evening.

Just before Christmas last year I remember a conversation with Steve were I said “do you know what Steve? We are all healthy, we are happy and life won’t always be this way so I’m thankful of these days of no health worries.” Did my sub conscience know what was to come, the cancer was already there, I just wasn’t aware of it? It does make me want to tell everyone to stop moaning and live everyday as we all have to die – fact! So make the most of health whilst you can and enjoy every pain free minute. I’m not just talking about cancer I’m talking about any illness, just because it may not be life threatening it doesn’t make pain any easier to bear. Yesterday talking to Leanne’s mom who has had a knee replacement recently we talked about pain, not sleeping and the disability that we both suffer. She like me doesn’t go out as fit able people push past us slow ones with walking sticks. We were both one of those people once, rushing around, working, looking after our families but all that is a distant memory and days are filled with pain, no sleep and painkillers.

I sleep in the chemo gazebo for an hour and wake to find mom is up, she wanted to use my laptop and had read today’s blog. She hugs me and says that she wishes she could make it all better, but no one can. Mom returns to the Midlands today, everyone needs a break from me, I wish I could get away from me. My mom would stay forever but we all need to have a balance in life and it’s important for everyone to have normality. For Steve it’s going into the office and for Rebecca it’s her job and friends, school starts this Wednesday for her.

So it’s a typical Bank Holiday and it rains all day so it’s DIY and a tip run for Steve, I’ve wanted to sort out the garage and loft for ages and today due to bad weather we have to do it. With mom gone I drive to Hughenden Park (moo moo land). I haven’t been out of the house for almost a week apart from going to the doctors so it’s lovely to be out but I can’t walk very well and even with my stick every step is so painful. I walk to the first bench and wait while Rebecca walks Molly. What must Rebecca think seeing me walk like a cripple, this makes me sad for her to see me like this. I make a joke about how fast I used to walk but it doesn’t really lift her spirits.

Back home Steve finishes the first lot of new shelving for the garage and it will all come together eventually.

IMG_4317Rita sends photo’s of the candles lit yesterday bless her as she has tried to make a W with them.

Like many of you she is shocked at the lack of support but I’m back on it tomorrow with my Doctors after I’ve been to the dentist.

My thoughts today have also been with Guy and his family but I don’t have his private mobile number so if anyone has it could you message me with it, thank you.

I’m hoping for a better night tonight in terms of sleep but if this doesn’t happen I haven’t long to wait to go to the doctor’s tomorrow.

Thanks to those of you that have offered already to bare their bums for charity, I will get in touch with you soon with more details 😉

 

 

 

 

#Double Trouble

I’d been really good all day, just resting in my chemo gazebo, using the new pain relief every 3 hours plus the gel and it seemed to be going well. Oh plus the hot water bottles that my lovely Linda brought me back in February to ease the pain of what we thought was wind.

By about 7 pm the real deep aching pain of cancer kicked in and wasn’t going away. Pain comes in many forms and my pain isn’t sharp acute pain, it doesn’t come and go it’s a constant ache, a deep ache inside the body as the tumours press on nerves I would imagine. I struggle on trying to cope, mind over matter and all that. At 9 pm Rebecca and I watch the X Factor, Steve and mom are not into this but I like to watch it with Rebecca. Still the pain continues. Nothing is taking the pain away.

X Factor over, I go back to join Steve in the kitchen and yet again we go round in circles on pain relief. Mom joins us, she knows we need professional help, where is the support network for cancer sufferers? What if I was I elderly or on my own with no internet for advice? I was given a prescription for oral morphine but no advice on how to take it or the side effects. Tramadol and Morphine make you constipated but I have drugs to take if that happens, they both can make you sick, again I have drugs to take if that happens. I get angry cos I don’t want to rely on drugs to make my body function like this. Steve keeps telling me that the tiredness of oral morphine will fade after two days once I’m used to it, I don’t want that either 2 days of hell so that my body gets used to a drug, no no no no! But the pain won’t ease up and I can’t get away from it, there must be another solution.

Steve suggests codeine which made me sick when I took it at A&E all those months ago so I have stayed away from it but it’s not as strong as Tramadol or oral morphine so I agree to take two. Within 20 minutes the pain eases and the sweet relief comes to the areas of my body that have raged for hours, excellent. Steve suggests that I try to sleep whilst I have these at maximum strength so at 11.30 I go to bed and awake at 4 am back in the same pain as I was in the night before. So the morning routine of one ibuprofen, 1/2 biscuit, coffee and a fag and now plus Linda’s hot water bottle, oh and I use the gel on my back and I finally feel the pain easing again. So that’s what I’m going to try today as pain relief, fingers crossed hey!

Why double trouble as the title of this post? Well the first trouble we have is to do with my quest to get screening for younger people and my Mr Wonderful has done some research for me whilst I watched X Factor.

In England we screen for bowel cancer from the age of 60. In Scotland they screen for this from the age of 50, why is they a 10 year difference? So if you live in Scotland you not only get free university education you also stand a better chance of surviving bowel cancer!!! 90% of new cases come from the age bracket of 50 + hence the screening and the 10% of us who get it below that age are not worth the public spending of money on to prevent/catch or cure bowel cancer. To these statistics I say to Steve “tell that to Steve’s family who died at 33 or Andrew’s family who died at 31″ but those are the facts. There was a case of a young girl aged between 5-9 who had it and 4 kids between the ages of 9-14 too, so sad. In my age bracket last year of 45 -49 there were 518 men and 462 women diagnosed with bowel cancer, screening from 50 would not have saved me or Karen or many others as the cost outlay doesn’t balance with the potential lives saved. Our lives are not worth the cost!

So what about taking control yourself and sending a sample away? Well you can do this but it costs £39 and a private company will test your poo for you. Now they must be making a profit and I have no idea of the true actual cost of the test. This I know will never work. The general public will not spend £39 and send their poo off to be checked and the government will not bring the screening age down to 40. So where does that leave us? At the very least we should be at the same screening age as Scotland and it’s a starting place, equal screening. It must be an awful job to look at the statistics and say no it’s not worth funding that and then read of families distraught with grief because they aren’t screened. I pity these people in the NHS as they can only do so much, they only have so much public money to spend.

BFF & BFF's Mom :-)
BFF & BFF’s Mom :-)

The second part of my double trouble is Leanne AKA – BFF is coming for a long overdue promise of a Sunday lunch, her favourite is lamb. This was planned for next weekend as we had hoped that the chemo was working and I would still be on the chemo cycles but no, as normal we are not used to good medical news in this house so it had to be changed as next weekend I’m going to the Midlands on 5th to see old friends and family and then it’s Sophie’s birthday party on 6th. I just hope that I can get the pain under control by then. Anyway so the ‘Full Monty’ Sunday lunch of roast lamb with all the trimmings is planned, followed by blackberry and apple crumble (blackberries from my garden) so why would this be trouble you ask me? Well I’ve been slightly naughty and invited Leanne’s mom too LOL So this will be fun and I’m looking forward to having them both in our home. Janice, Leanne’s mom is excited as she will get her photo in the famous chemo gazebo and loves blackberry and apple crumble so it’s all good and completes my double trouble title.

IMG_4309Now today’s post should change to triple trouble, well not really as I had a visit this morning from Jane who used to do my hair for years, not only mine but the whole families but she moved to the Isle of Wight 14 months ago. I am so glad that she and Perry are happy over there in their new life.  Here she is enjoying breakfast with Molly. Almost in the chemo gazebo. Jane is my partner in crime as I was so overwhelmed by the generous donations from the BHS store there that I asked Jane to take them a thank you card and a box of biscuits in for me, it was the least I could do for them. Almost everyday they send me a donation to which I am very grateful for, as I am with all donations no matter how small or large they are. They go to a great charity. Now talking of charity, Steve wants to do a naked bum calendar for 2016, tastefully done of course and Jane has offered to be March. If there is anyone else who would dare to bare their bum, male and female please let us know. Bet you are all saying ‘oh no I can’t do that’ well I don’t blame you as I’m not loving the idea but we want to raise awareness and Steve’s idea is to put an educational message on each month.

#Squirrelgate update! I was just editing today’s post with Steve when we heard Molly bark and she never barks, looking up we saw a squirrel on the fence with one of Molly’s balls which it quickly dropped. That’s one less ball for their ball pit or game of tennis later! Cheeky little things!

A quick update on my Twitter antics are that I have tweeted many celebrities but apart from Charlie Boorman and Peter Andre, my early successes no one else from the world of fame seemed bothered or they just think I’m mad. When Peter Andre starts ‘Strictly Come Dancing’ next week not only will I watch it but I’ll be voting for him too. Steve had a brainwave of searching for Patrons of bowel cancer as all charities have famous people supporting them so looking into this I have discovered that Freya North (Author), Kevin Sheedy (Football Player) Matt Dawson ( Rugby Player) and the lovely Floella Benjamin are some of the charities patrons with Twitter accounts so I’ve tweeted them. Lets see if at least they can support us. Floella was my favourite presenter on Play School (kids TV programme from the 70’s) and I was star stuck when I saw her at a Lib Dem conference having coffee in a local coffee bar. I was going to go and say hello but I thought it rude to interrupt her coffee break.

The blog as a book ‘Daisies and Dolphins’ is now available to download. Please leave a review and a star rating for me as others will only read it if they know others have recommended it, thank you. remember the book is free as this was never about making money it was only about educating others, sharing the journey and leaving a daily trail of love.

It’s 5.45 am and the morning light is just breaking through and today’s post is written :-) that leaves me free to get some project work done or work and then enjoy my Sunday with friends and family :-)

Thanks to Rita for her prayers and candles today as she will be burning those candles for us all. And a final good luck & thinking of you message to Guy and his family for tomorrow.

Back to life :-)

So yesterday was a complete blur, we started off with Tramadol which didn’t work and so we moved onto morphine. This turned me into a Zombie and only awake for a few moments every hour and even when awake my eyelids kept drooping like in the Tom and Jerry cartoons. The more pain I was in the more morphine I took and the worse it got. It must have been so hard for Steve, mom and Rebecca to see. They would talk to me but I couldn’t focus on listening or talking to them. I couldn’t focus on writing my blog or replying to any messages, now you know I’m bad to not be replying to you guys.

Midnight came and I decided to go to bed, Steve was going to stay up as he can’t sleep if he is worried about me and he had seen me suffer all day. I went to brush my teeth and as soon as I had I started being sick, really sick but I hadn’t had time to get to the toilet. I shout downstairs for Steve to get my a jug. I then spend the next 10 minutes trying to scoop out the sick from the sink into the toilet. We had Moussaka for tea and there was aubergines, mince and potato everywhere. Too much detail I hear you say but ‘warts and all’ that’s what I was doing at midnight, scooping sick.

I felt instantly better, I went back downstairs and told Steve “no more drugs, we have to find another way”. Julie my ex ex boss who now works for Boots had been speaking to the pharmacist at Boots and one good idea was to spread the painkillers so that you don’t have periods of time without any pain relief, so I said that tomorrow we should try this and Ibuprofen gel for the pain in my groin and back.

I go to sleep just after midnight and wake again at 3 am. So I start the new pain relief regime and take just one double strength Neurofen along with a coffee, 1/2 biscuit and a fag. Josh, Rebecca’s boyfriend brought me a #hashtagaday note book and a pen that says ‘get stuff done’ so I’m using that to write down all the painkillers I take everyday.  It’s so early but at least I don’t feel drugged up and spaced out. I doze on the settee in the kitchen and move outside at day break. Molly Moo, the dog is a little spoilt bless her and she has so many balls which always seem to go missing and this morning I’ve discovered why. I saw a squirrel running along the garden fence with what I thought was an apple in it’s mouth but as it ran down the fence and past one of Molly’s other balls on the ground I could see that it was actually the same size as Molly’s tennis balls. So our squirrels must have their own ball pit of Molly’s balls or enjoy a game of tennis when us humans are asleep!

Steve, mom and Rebecca finally wake and are amazed at how different I am without drugs. I have even managed a shower where I say to Steve “just think of the money I’ll save on shampoo and conditioner with no hair.” Well I have to start to laugh don’t I, and why only head hair? Us girls spend a fortune trying to get rid of other bodily hair. So I’ll still have to continue to deal with shaving as you can’t wax whilst on chemo, life just isn’t fair sometimes is it? Another thing you can’t do whilst on chemo is have any dentistry work done. I have my teeth cleaned at the dentist every 6 months and even this is not allowed. Yesterday whilst in a brief period of being awake, I was just talking to Steve and the back of my tooth fell out, I wasn’t even eating anything it just fell out. I have made an appointment for Tuesday but I doubt if they will help me. My body is literally falling apart!

Steve and Mom go into town in search of gel and a walking stick, another idea of mine so that I keep the weight off my right leg. Mom returns with one that looks like it’s been painted by the people that do canal boat art, it’s red with roses on it. I said that I didn’t want a boring black walking stick and asked for a pink one, now I will look like I’ve stolen it from an episode of Rosie and Jim. I sleep in the afternoon as normal but it’s a normal sleep and not a drug induced one. I wake to emails of donations from Chris Shaw, who I used to work with at M&S in Oxford Street and Denise and the BHS North West Team. Thank you so much as I always love getting a donation for such a great charity.

I spoke to Mr Grey today and we discuss how serious I am about getting screening started for people from the age of 30, he agrees with my comments on the blog that if this was breast cancer there would be an outrage but because it’s bums and poo no one wants to know unless they have been affected by it. Mr Grey says that it’s mad as breast cancer is only for women but bowel cancer effects both sexes as we all have bums, this made me laugh but it’s so true. But how on earth am I going to change things to save just one life? When I spoke to Julie last night about it she said “lets just get you right first and then we will take on changing the world.” Wise words Julie but it’s probably too late for me and others like me now but what about all the people out there with bowel cancer of tomorrow at a young age, who is going to help the next generation? This troubles me as with so many and like me there are no symptoms until it’s too late.

I have finally caught up with all my messages from yesterday and I’m so sorry that I made you all worry. I’m back to normal now and hope to continue in that vein. How on earth people take morphine for pleasure is beyond me, I just don’t get it at all.

So Rita prayer list for tomorrow is for Karen and Frankie as normal, for peace for my loved ones as they have had yet another rough week and for anyone addicted to hard drugs through whatever illness they have as being on strong drugs is not a nice place to be in and they need peace too, thanks Rita xx

Screen Shot 2015-08-19 at 15.48.52Oh and finally the iBook has been published and Steve is going to put a link on the blog for you or you can go directly to the store and get it for free. My only request is could you rate the book for me or leave a comment so that more people will think about reading it. It’s all about helping others and if more people read my story then more people will be educated and then together may just save one person, wouldn’t that be amazing :-)

Click here to download.

Drugs, drugs and more drugs

It’s 5 pm and mom asks me if I have done today’s post. “I’m not doing one” is my reply as I find focusing hard, I haven’t caught up with any messages today and who wants to hear about how shit my day has been? But mom replies that people will worry so I have decided to do a short post for you.

Last night Steve and I took Molly for a walk, well I say a walk as I can’t walk so I sit on a bench and Steve throws Molly’s ball. He wants to help the charity Beating Bowel Cancer and is thinking of doing a Skydive. He also wants me to do a naked bum calendar for 2016. I stop him right there as I can do fun and jokes, I love humour and admire anyone who tries to make the best of things but I’m angry.

Yesterday I shared an article that had been posted on Facebook by Beating Bowel Cancer about a man called Andrew, here is a small part of his story:
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Andrew Dickson (pictured) was a partner at the Meanwood branch and was diagnosed with bowel cancer in October last year, aged just 31. Andrew sadly passed away in June, and as his colleagues’ fundraising page states “his commitment to Beating Bowel Cancer was infectious and the fight against this dreadful disease continues in his memory.”

Now like the local charity event I attended some months ago in memory of a man called Steve who was diagnosed in the Autumn  and died the following June.

Both stories are tragic as from being diagnosed to death is only 8 months. Now if this was breast cancer there would be an outrage of sympathy and support. I’m not saying that they weren’t supported but too many young people die of bowel cancer and we don’t screen for it. I admire fund raising and I’ve done loads of it with BHS who actively support great causes but unless we educate people and start screening from 30 more families will suffer the loss of loved ones.

There is only one problem and that’s the general public. Before I was ill I like everyone else didn’t like to think about cancer, it was a dirty word. If you don’t say it then it won’t come knocking at your door. Someone dies every 4 minutes from cancer in England and it affects one in every two people so how do we educate people, save lives and prevent misery and grief?

We have been struggling to get my pain under control. We have tried Dr Williams’ advice yesterday but it didn’t work and so this afternoon we are changing to morphine. Hence me not wanting to write a post today. I’m sorry if I haven’t replied to your messages but my head is all over the place, I can’t focus on the keyboard for long and I’ve slept most of the day. Steve is determined to get me out of pain and I know he will keep trying.

So it’s all a bit shit here and until I can get pain free it’s going to be. The morphine knocks you about for the first 48 hours apparently until you get used to it, so I put my faith back in Dr Weaver and Steve and I’ll just have to put up with it until my body gets used to it. Still no contact from Macmillan!

Yesterday I posted up a poem from Sarah my sister in law. I was horrified when she texted me to say I have put it up in the wrong order, whoops so here it is again and I hope it’s correct now, sorry Sarah.

What is cancer? A poem just for Wendy.

Its more than just an illness, cancer is a thief,
Who comes in uninvited and causes untold grief.

It steals the plans that we all make, the dreams that we hold dear
And in its place it fills us all with endless hate and fear.

It needs no invitation, it does not care about
The destruction that it causes, of that I have no doubt

If love could halt its progress, it would have left at speed
And realise this it’s not the place to satisfy its greed

If love could stop it in its tracks, if love could find a cure
Then love would have restored you back to health and find you well once more

But we who feels so helpless, we who fear defeat
We who lament that this is an enemy who’s impossible to beat

Should remember cancer cannot control everything in its way
That we can still love and laugh and hope and thanks dear Rita pray

For memories last a life time and surely love endures
Long beyond an illness that as yet we cannot cure

And what comes from a barren land is beautiful to behold
How someone turns their suffering from darkness into gold

For the human spirit is amazing and to adversity finds an answer
To see beyond its own self, to see beyond the cancer

To see that reaching out to help and looking out not in
Can help others to understand and help them to begin

To share this difficult journey, to support you and your cause
To raise much more than awareness and just take time to pause

To remember those who suffer, as life is cruel at times
And to wonder at the inspiration that people in fear can find

For Wendy I know you suffer and your pain is hard to bear
The tiredness is overwhelming, it’s all seems so unfair

So these few words are written to you with love and with support
These few words to make you smile when you are feeling distraught

Your spirit is so vibrant, burning brightly in the dark
Cancer cannot dull its shine or ever supress its spark.

Cancer cannot destroy the love that you have found
Or the inspiration that you bring to those who are around

For you are more than a victim, you are an inspiration to us all
And for that you should stand proud, you should stand very tall xxxx

The memories that you hold dear can never be destroyed

 

Back to pain

Last night over dinner we planned curfew time. It’s was mom’s turn and a film was chosen as I only have to sit to do that. Whilst enjoying a coffee I had a text from Richard. He is doing skydiving this week and he has ordered a GoPro camera accessory pack which he wants so he can film himself jumping, this has been delivered to our house today. So we agreed to meet 1/2 way on the M4. Steve and I like being alone together so this isn’t actually a chore. We happily talk all the way there and back. Richard is delighted to have his accessory pack and we share a precious 1/2 hour and a coffee together before we have to leave each other again.

We get home and Steve asks me if I want morphine or alcohol with my tablets tonight. Dr Weaver has said that I should be taking 1 Nurophen of 500grms and 2 paracetamol every 4 hours. I opt for a glass of wine as Mr Vines and some of the team in Staines BHS store have sent me 3 bottles for my birthday. It’s now after 11 pm and so my favourite game of ‘wack a comment’ begins. I enjoy thanking you all for sharing my blog and reading the wonderful comments on Rebecca’s video skills. I told her that she had reduced most people to tears, she smiles and is happy that it made others happy and sad too. Uncle Bloody Alan has made many of you laugh too and I have told Alison to tell him, bless him.

There are no comments on tonight’s blog post which is unusual and I receive messages from Nicky and Rita that it won’t work. Steve spends 1/2 an hour fixing it and it’s now okay again, sorry about that but mine’s always broken.

Steve goes to bed and I stay up to watch the video again and to enjoy my wine. I get bitch slapped again by Karen Brindle about my pain and I have to admit it is getting me down so much, constant pain is not easy to live with. I go to bed at 1.30 am as there are no more comments to wack. The pain wakes me up at 3.30 am but I can’t possibly get up so I try to sleep again. I give up at 5.30 am and the usual routine has now changed to painkillers, feed animals, coffee, 1/2 biscuit and a fag. The pain is not going away or fading and I know I have to seek help as within one week it has just got worse everyday. Steve wakes and before he heads off to work we discuss pain relief, I said I will go to the doctors but then why bother them when I have cancer nurses to talk to over the phone, surely they will help.

I phoned the cancer nurses at Wycombe and they were not helpful at all and told me to go and see my GP. I wasn’t expecting that response at all. I just want to know what other drugs are safe to take with the ones Dr Weaver told me to take. I have so many drugs and I don’t want to get it wrong. I call my GP and get an appointment with Dr Williams. He was the poor doctor on February 22nd who Steve and I demanded to know the results of the biopsy, he had to tell me it was cancer, poor thing. So I start getting ready and mom asks if the wine worked and I snap her head off saying that nothing seems to bloody work, my poor mom, I said sorry and she hugged me saying it doesn’t matter. Dealing with pain every minute of every hour of every day just wears you down. So I take a Tramadol to see if this helps.

Dr Williams remembers me and said that it was a hard thing to do back in February, to tell me I had cancer. He knows I’m stage 4 and looking at 12 – 18 months. He assures me that we can get the pain under control. He has told me to take 1 Tramadol and 2 paracetamol together and if that doesn’t work to take an extra Tramadol. He is shocked that I don’t have a Marie Currie cancer nurse for palliative care. This is about the 3rd time someone has been shocked that I haven”t got specialised help and he refers me again! I even contacted them myself but they only sent me leaflets, I have to say that I have not been impressed with the support for cancer sufferers. Oh and Jo we also discussed the Disabled badge thing and as soon as I can get to a photo booth to have a passport photo taken then I’ll complete the forms and the Doctor will support my application.

I return home and take more drugs, now I’ve lost the day to either being asleep or in pain. I take another Tramadol as I am not due to take painkillers until 4 pm to help take the edge off the pain but it doesn’t work and my mood is getting lower, How much pain can anyone constantly take? I don’t want to sleep all day and be like a zombie but I don’t want the pain either, again no choice as this bloody disease eats away at me.

I have done no work at all I nearly didn’t do today’s blog as I didn’t think I would be able to focus but a promise is a promise so I have started it. It does help me doing my blog and whilst this one maybe short it does detract my mind from the pain so I am also going to try to do some project work too and hope that I don’t make too many mistakes.

Toon, Richard, Parker and Wall
Toon, Richard, Parker and Wall

I get a text from Richard to say he has completed his first skydive and he loved it. He has also sent me a video of the jump. He has Jackie on his helmet as that’s his nickname in the army just in case any of you think he is a girl lol. I am very proud of him as I couldn’t do it.

Richard goes to California in November for a week to complete a course so that he is a qualified SkyDiver, it’s a hard life in the Army hey!

Thank you to Jay for being Steve’s lunch time partner today, as you have been on many occasions. Jay takes chemo for arthritis so he understands the side effects. Thanks also Jay for reading my blog.

 

 

My head keeps spinning so I’m going to leave you with a lovely poem I received for my birthday from my sister in law, bless her, thank you Sarah.

 

What is cancer? A poem just for Wendy.

Its more than just an illness, cancer is a thief,

Who comes in uninvited and causes untold grief.
It steals the plans that we all make, the dreams that we hold dear
And in its place it fills us all with endless hate and fear.
It needs no invitation, it does not care about
The destruction that it causes, of that I have no doubt

 

That we can still love and laugh and hope and thanks dear Rita pray
For memories last a life time and surely love endures
Long beyond an illness that as yet we cannot cure
And what comes from a barren land is beautiful to behold
How someone turns their suffering from darkness into gold

 

The tiredness is overwhelming, it’s all seems so unfair
So these few words are written to you with love and with support
These few words to make you smile when you are feeling distraught
Your spirit is so vibrant, burning brightly in the dark
Cancer cannot dull its shine or ever supress its spark.
Cancer cannot destroy the love that you have found
Or the inspiration that you bring to those who are around

 

If love could halt its progress, it would have left at speed
And realise this it’s not the place to satisfy its greed
If love could stop it in its tracks, if love could find a cure
Then love would have restored you back to health and find you well once more
But we who feels so helpless, we who fear defeat
We who lament that this is an enemy who’s impossible to beat
Should remember cancer cannot control everything in its way

 

To see that reaching out to help and looking out not in
Can help others to understand and help them to begin
To share this difficult journey, to support you and your cause
To raise much more than awareness and just take time to pause
To remember those who suffer, as life is cruel at times
And to wonder at the inspiration that people in fear can find
For Wendy I know you suffer and your pain is hard to bear

 

For you are more than a victim, you are an inspiration to us all
And for that you should stand proud, you should stand very tall xxxx

 

There’s no place like home

We are all safely back home from Somerset, the journey home was so hard due to the heavy rain, the British climate never fails hey! But I’m back at home back in my chemo gazebo in my garden, in my home with our rules and not under the prying eyes of Christine the site manager who became obsessed with what Molly was doing and where she had been within the house. The 5 precious days away together has been a complete mixture of emotions. It’s had laughter, sadness and tears. Nicky can’t believe how much I have changed since she saw me last just 6 weeks ago. I can’t believe that a few weeks ago I was up to making the video and spending days with lots planned as now my days consist of clock watching for the next lot of drugs I can take and due to the pain I walk like an old woman, bent double. I can’t even lift a full kettle now as it’s too heavy. Last night Steve and I briefly spoke about how my health had been over the holiday. He knows that for me to take morphine the pain must be bad. I tell him that it will just get worse and I’m so sorry. He struggles so much as the others have done being away seeing me in so much pain. Beth isn’t used to seeing it and I worry about the effect it will have on her but she was wonderful, helping me walk, fetching me things, walking Molly for me but the best of it was seeing her and Rebecca making special precious memories together, laughing together, being friends, mission accomplished I think.

Last night Rebecca and Beth came up with the game of ‘How well do you know your best mate?’ A bit like Mr & Mrs. They planned it themselves and although I lost by just one point they were the winners actually as we laughed and relived some wonderful stories that otherwise they wouldn’t have known about from the friendship that Nicky and I have had which has lasted since I was 17 years old.

The highlight of the things we did on holiday has got to be Dismaland and I wanted to share a few photo’s with you. My favourite was a video I watched by Jason Headley

(contains strong language, over 18’s only. Health and Safety covered again)

my kind of peace and meditation, makes perfect sense to me anyway.

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Yesterday I talked about us car dancing and Rebecca filmed 30 seconds of it, neither Nicky or I were aware she was doing this but I’ll share it with you all anyway as it’s a fun memory:

IMG_4293We then went for cake at a wonderful coffee shop, dogs were more welcome than the humans. Molly had two treats and then slept under the table as good as gold as we ate cake, yummy. We then walked to the sea front but by this time I can hardly walk due to the pain. Nicky, mom and I stay in one of those sea front shelters whilst Rebecca and Beth go off to walk Molly along the sea front. I’m in so much pain and tired out that I sleep with my head resting on Nicky’s leg. I need to close my eyes and hope that the drugs I’ve just taken kick in. Nicky gently strokes my hair and I doze off for about 20 minutes. The car journey home didn’t contain any dancing as before and I was so glad just to be back safe at the holiday home. The pain was just unbearable and I gave in and took morphine. 3 hours were lost due to me sleeping but at least the pain had eased off. This scares me as I can feel the cancer eating away at me inside, the pain just won’t stop. Like before my operation I get so down about the pain and not being able to do things. With the chemo not working I fear that the next lot won’t either and the now 12 – 1IMG_42918 months left maybe even shorter plus I will have lost my hair. Oh shit I’m dreading that. Courage to take chemo is hard enough but this next treatment is going to take all of my inner strength. I have no idea how I will react to it again and after the second course of treatment my hair will start to come out

The internet was so bad at the holiday home that I struggle to keep up with the comments and thank you’s to you all. I know you all say don’t worry but it’s so important to me. After curfew time on a normal day I’m straight to my laptop to see how many hits the blog has had, where from and I love to read your comments. These are so precious when left on the blog as they will be there forever and form part of the new eBook. Steve or mom often say “oh you’ve had some lovely messages” so they read them too and it helps them.

The problems publishing the eBook should be resolved in the next 24 hours. It’s been a week since I promised it to you but in true Wendy style, mine was broken but Steve has fixed it for me. I will of course let you all know when it’s ready to download from iBooks.

IMG_4297So I’ve been spoilt rotten for my birthday, so many cards, presents and messages it’s so hard to pick out a few which are special but I will have to. My favourite card was from ‘stud muffin’ Pete and a photo proves why it’s my favourite, it made me laugh so much. Most naughty present was from my BHS family in Kingston who spent way above the usual amount. Rita sent me a wonderful box of daisy goodies, I return home to beautiful flowers, more cards and a special box from Aunty bloody Vera who has loaded an old tea box full of little surprise presents and even a present for Molly :-) the scratchcard won us £4 so I can now say I’ve won the lottery but I won’t spend it all at once hey.

My favourite present was from Rebecca who on her own contacted you from my blog and she produced a wonderful video of birthday messages from so many of you. Thank you to all who sent messages and a massive thanks to Rebecca for pulling it all together for me. How thoughtful was that of her, bless her. So as it’s what you have all been waiting for, here it is…..

Now I’m home I will be back to normal in terms of being connected to you all. This helps me so much, gives me a focus for the day and I get strength from it.

I have been contacted by the hospital today and the new chemo cycle will be September 2nd at 12 o’clock I go in to have the PICC line inserted into my arm. On Friday 5th September I have to have bloods taken and then on Monday 7th I go in to have the first lot of the new chemo treatment.

Now you know what this means don’t you? Yes I’m coming up to the Midlands to see you all. Leah reads my blog daily so Leah we can’t wait until the new year and I’m bald, we need a get together on Saturday 6th September. Everyone is invited, family, old school friends and new friendships I have made via the blog. We will have a fun night to remember so details on venue and times soon. On Sunday we hope to see baby Jacob for the first time before returning to Wycombe. The weekend will give me something to look forward to and focus on rather then the chemo to come on the Monday.

Thank you for all your donations, to Sarah Gillett, BHS HR Director, Tim and his mom and Paulette yesterday for their generous donations, the total is now at £2202.00. I have received messages from Beating Bowel Cancer to say how grateful they are. The video views of ‘Cancer Free’ are at over 5000 between Facebook and YouTube due to you sharing it and the visitors to my blog have risen to 39, 681 and I thought no one would be interested in my story!

Final congratulations to Beverley in America who is a regular blog reader and the arrival of her Granddaughter, Caroline.

Happy Birthday to Me :-)

I was woken this morning to a call from Richard with at least 8 army mates singing happy birthday to me down the phone, a male choir lol.

I opened presents and then came my big surprise a video from some special people in my life which my wonderful daughter had organised for me, it made me cry and laugh, just wonderful. Thank you to everyone who sent in messages to help her complete this surprise for me. It will be on tomorrows blog.

Facebook messages, emails and texts flood into to me with love from you all, thank you.

We head off for a day of fun, hoping for the sun to shine. We car danced all the way :-) singing and laughing. But I was late with my medication and got into trouble with the pain. We returned home and I couldn’t cope anymore and I hit the morphine :-(

I have just woke up and I know that you will understand that I need to let you all know I’m okay but cancer pain is so hard to bear when it’s bad. I know I need to just enjoy the evening with family and not do a full post but I’m okay so don’t worry. If I haven’t replied to your messages I’m sorry but the signal here is so bad that I can’t see all of them but I will catch up tomorrow when we get home.

I’ll just leave you with a video of my special things which if you have read the blog from the start you will have seen it but you may have missed it. It always make me smile and sometimes cry when I watch it but life is about people, love and sharing those moments together.

More rain and less pain

As you all started your working week, daily commutes following whatever you did over your weekend I woke at 6.30. Now that’s good for me. Last night Nicky and I stayed up having girly chats and vodka until 2 am. Which makes it sound like maybe we had had to much to drink but that wasn’t the case, we just chatted as old friends but of course cancer dominated the conversation. Nicky like I struggles to believe that I may not be around this time next year or even reach 49 years of age.

I remember an early post when I talked about my first goal being to outlive my dad who died at 57. Now I think that was a young age to die and here I am in the same boat but with a worse outboard motor and no spare to replace it with.

Following Steve’s breakdown yesterday he feels that he has let me down and that’s just not true. I can’t believe that he has lasted this long. Richard helped Steve yesterday and they both get the anger part of the emotion but there is no one to be angry with.

Last night we went into Western Super Mare as I thought although it’s raining we could walk on the pier. As we drove along the sea front we saw the exhibition of Banksy Dismaland. Rebecca Steve and Beth want to see this but the tickets are sold out. The pier was closed and apart from the queue for Dismaland it was deserted. I completely understand why the British seaside has fallen into decline. We have a beautiful coastline and some fantastic beaches but the bloody weather just makes the whole experience miserable. I don’t mind a little rain but when it never stops and there is no hope of it stopping it’s just so depressing. When abroad I can stay on the beach all day with Steve and a good book. I would have even been happy with dry but cloudy weather as I would have still been happy sat on a beach as long as Molly and everyone else was okay but endless rain is not nice. So after only 20 minutes in Weston we head back home and enjoy a game of Cluedo which mom won. We were then going to play the music quiz game but we have only brought the empty box and the CD is still at home, typical hey? We then played the ‘Yes/No’ game we brought from home and had a laugh at that, I lost as normal.

IMG_4256Everyone awake Steve has to work, I worry as there is no internet here to speak of at all. Like when my mom went to ‘buffer island’ we are in ‘buffer dip’ where you can actually see the 4G signal tower thingy but you just can’t connect to it. We have decided to make the best of the day and visit Cheddar Gorge. We leave Steve to his ‘buffer face’ and as soon as you pull off the site you get full 4G, which is so exciting.

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At the caves the plan is I stay with Molly so I’m not walking too much whilst everyone else goes around the caves. Molly and I head for Costa’s but I can’t go inside to order and there is no one outside to ask to help me. I give up and walk to the cave exit to wait for them. Nowhere for Molly to run and the rain just keeps coming. Caves done and we go for that coffee in the rain.

Returning back home we have dinner and I go for a sleep. I wake and it’s still raining :-( IMG_4263
We play the ‘Who am I game’ which I won :-) whilst Steve slept but we woke him with our laughter.

Last night your comments were lovely that you left on the blog. The pressure of having a great time is just too much, just like Christmas we all have hopes and dreams of perfection but life just isn’t like that and perfect is like any Disney film, just fantasy.

My stomach has been better since we had home cooked food yesterday and I haven’t shit myself today so that’s good hey?

I have had a message from Jani from the charity ‘Beating Bowel Cancer’ who has just caught up with my blog. I thank her for her message and does she have any other advice following Friday’s meeting as I’m not beating bowel cancer, excuse the pun. She has sent through a long reply which wouldn’t load earlier and I had ‘buffer face’ again but I will read it and reply to her.

Bathed, cottage pie for tea (thanks mom and Nicky) the sun is shinning and we are off to the pier and Dismaland to pick some more daisies.

Thank you to the two people who donated yesterday on my just giving page. It always make me happy to get a email to say someone has donated. One of the donations is from someone in the BHS family and I am so touched again by the support from the wider BHS family.

Happy Birthday to Chris and Ian plus I keep forgetting to thank Josh (Rebecca’s boyfriend) who is house and Tia sitting (the rescued cat that has never been grateful)

 

 

Rain, pain and more rain

Last night there was a tribute programme on for Julie Walters. I’ve always loved anything she has been in and so I watch this with mom and Richard. We are passing time, as Rebecca’s train is due in at 23.07. Calendar Girls, the film is on next, a great film but probably not the best one to watch at the moment.

Steve leaves to fetch Rebecca and he has told her of the trauma of the house move, whoops I haven’t told you that bit yet.

IMG_4230So last night we set off to Brean sands to take Molly to the sea, within 10 minutes of arriving it starts raining so after just 30 minutes on the beach where at least we can get a signal, as back at the house the internet is beyond awful and we all either have ‘buffer face’ or no signal at all. Catching up on line done we head back to the house. The plan was to have an Indian tonight. As we wind down country lanes my phone rings, it’s Christine the lady I booked the accommodation with. She says to Steve that we were in the wrong house that she forgot we had a dog and that she wants us to move to other house on the site. Steve is not happy; we pull over for me to speak to her. I understand where she is coming from as the house is lovely and I would hate to ruin the carpets so we agree that I will call her when we get back, after we have had something to eat.

We go in search of a Tesco Direct as we both needed fags. There is a chippy next to Tesco’s so I suggest that as we have to move house when we get back we save time and get fish and chips.

Back at the house the food is so bad that it ends up in the bin, I can’t describe how bad it was, the batter was like no other I had ever seen, more like shoe leather.

Steve goes off to get Burger King and I call Christine. The house she wants us to move into has a small fridge and no dishwasher so I say no to moving, as it is her mistake. Richard in the meantime has packed up the kitchen, which now has to be unpacked but he was only trying to help. Steve returns with Burger King, the rain gets worse and the only good news is that we are not moving.

IMG_4243Okay so Rebecca arrives but looks like the trip into London and the 2-½ hour train journey has taken its toll on her, she looks pale. Everyone goes to bed and Steve and I have a beer outside. The pain then starts in my back and groin. We go to bed and I have to have more pain killers as you know when you are in so much pain that you can’t stand to even move, well it was like that. I tell Steve he has to sleep as it’s now after 1 am and he was up early. I wedge a pillow between my legs and try to sleep. I wake at 4.30 pain still so intense that I’m up and at the painkillers again before even I have a coffee.

IMG_4238So I then get myself a coffee and my fags and go outside, as it’s no smoking indoors at the house, it’s still raining. After my 2nd coffee I need the loo but I don’t make it in time and now I have shit running down my legs, over my dressing gown, on my slippers and on the floor. Oh for fecks sake, can this get any worse? I clean myself and everything else as best I can. Mom wakes at 7 am and so I use their bathroom to have a shower, lucky for me I opened Richard’s birthday present early a complete Superdry outfit and I don’t have to wake Steve up to get to it. After a shower I’m back in clean clothes. Dressing gown in the washing machine, excellent back to normal.

Everyone else eventually wakes up and I tell them all of my awful night. I’m still in pain, it’s still raining and I can hardly walk. We decide whilst it’s raining to go to Morrison’s and get a chicken for today and have a roast dinner as I don’t think I can’t cope with anymore takeaways. Steve, Rebecca and I go. They have a massive display of things to do in the local area. So with shopping brought, including a birthday cake for Beth we head home with visions of quad bikes, country walks and steam train rides for the day.

But life doesn’t always go to plan does it. I cook Steve breakfast and have a Danish myself then it’s back to the sofa with my hot water bottles for comfort. Just going to the shops is so hard and takes it out of me. I can’t go outside as it’s still raining L and Rebecca joins me and I slowly nod off. I wake to Steve swearing about wanting to get out of the fucking place as it’s doing his head in and he can’t stand watching another minute of Jeremy Kyle.

Oh no whilst I had slept my loved ones had gone into meltdown. Rebecca and Mom go out to get Rebecca a coat as she hasn’t got one and Richard decides to take Molly out for a walk.

Steve and I are left alone, alone now there’s a word. Trapped in the same nightmare but from different angles but both alone in how we feel. Steve tries to talk to me, I make an excuse to go into the kitchen for a tissue and sob my eyes out, and all the activity leaflets still on the table advertising great fun filled family holidays. Crying didn’t even help lift my mood, I wanted to scream. I return to Steve outside. Now I am not going to go into all the details but for the first time ever on this shit journey neither of us can cope anymore and we sobbed together, neither of us able to help the other.

Richard returns with Molly and takes Steve out to get canvas chairs, a duvet and some trainers for Steve as he only packed his formal shoes.

I know coping with cancer is going to get worse, it’s eating away at me again, not just physically but my health, my emotions and my strength of character, I fear what’s to come so much and what I will be putting my loved ones through, this makes my so sad as they can’t cope and neither can I.

Left alone but not for long, Mom and Rebecca return with canvas chairs, bless them for trying to solve just one of our problems.

The door goes and Nicky and Beth arrive. They bring the sunshine with them J Steve returns with Richard with all things purchased plus the game Cluedo to play together, in Steve’s excitement to show me what he had brought he tripped on the rug in the front room and spilled the surprise Iced Coffee Frappe for me from McDonalds all over the rug.

Now Christine was worried about the dog making a mess but between me shitting myself and Steve with his spillage the dog is the least destructive of us all.

Rug washed and chairs all out for everyone Steve suggests we go for a walk around the lake. Walking is so painful, every step sends a sharp pain down my leg, and we don’t walk far and return for me to have another sleep.

Awake again Steve and Richard are playing chess together, mom and Nicky have been cooking the roast chicken and Rebecca and Beth flit between the two.

After dinner we are planning another trip to the sea, rain or not before Richard has to leave us to return to work.

I usually get my mom and Steve to edit my posts but not today, I will spare them reading how bad things are so any mistakes blame me, sorry.

 

We enjoy a lovely roast chicken Sunday diner, thanks mom and Beth as promised enjoyed her birthday cake.

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Lets hope things get better hey, as tomorrow is always another day :-)

Hair today gone tomorrow

So you may have guessed that the majority of yesterday’s post was written prior to the appointment. This was so that if it was a difficult meeting I could, as promised just give you the general outcome and details and then fill you in with more details today.

Whilst waiting to go into see Dr Weaver we saw uniformed officers leading away a handcuffed inmate out of the department. An odd thing to see but prisoners I guess get cancer too and have to be treated. During the meeting as I signed the consent form for the new treatment (you have to do this in case they kill you) I used Dr Weaver’s pen. As I signed away I dropped his pen on the floor which caused him to laugh as I said ‘sorry but at least it isn’t a Mont Blanc pen’ but of course it was a Mont Blanc pen as he charges £240 for 40 minutes of his time privately, so why was I not surprised.

We had to wait half an hour for the drugs at the pharmacy and then got stuck in the car park as the car in front of us was having a problem getting out. I sent texts home to say we were on our way as I knew they would be anxious. Finally home and everyone together I gave them the basic details of the meeting. Mom was pleased that it was still not in my vital organs, Rebecca was struggling to understand the details and Richard after about 20 minutes was just angry. This prompted us to have an argument which I won’t go into but it’s just that anger plays such a big part of people’s emotions. Anger, frustration and just the feeling of being completely helpless. After I had cried after the argument with Richard, he said are you putting that in your blog, to which I said no but it needs to be mentioned as this is about helping others and it being real ‘warts and all’ so no details but I’m not perfect, my family aren’t perfect and life isn’t perfect so I decided it had to go in today’s post. Anyway Richard doesn’t read my blog so he will never know.

After final packing was complete for our holiday Steve and I decide to sleep in the chemo gazebo again under the stars, why? Cos we can, cos life is too short, cos it’s special and it’s not a normal day is it? I’ve been really good and taken painkillers but the pain is so hard to bear as I get into our bed under the stars. I nearly reach for the morphine but with a hot water bottle I manage to cope and sleep until 4.30, I go back to sleep for an hour and wake at 5.30. Normal routine of 1/2 biscuit, coffee and a fag. I’m excited that we are going away and I just have to wait for everyone to wake up. I read the side effects of the new treatment I am going to be put on. So apart from fatigue, hair loss and diarrhea the other side effects of chemo throat, extreme reaction to cold, lock jaw, no taste and tingling of fingers and feet etc are not mentioned so I’m hoping it will be easier. On the hair loss front it states only head hair will be lost so I won’t even get a break from shaving other lady areas!

Everyone wakes and we eventually load up all 3 cars and head off to our 5 day break. The M4 wasn’t too bad and we stopped for a quick coffee. I needed the break as although I had again taken painkillers before we set off the pain is always there. I know that it won’t be long before I have to take stronger ones but with those you can’t drive and there is no way I am missing these next 5 days. We hit the M5 and it’s like being on the M25 and we crawl slowly towards junction 24 where home will be for the next 5 days.

IMG_4221We finally arrive and the house is amazing, it overlooks a lake, it’s a new build, very posh as the interior is like a show home. It has 3 loo’s and it’s just perfect. The main bedroom has a Juliette balcony which won’t open and after about an hour, a ladder and drilling the lock out we even get this working :-) now it’s perfect.

 

 

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So how am I feeling I hear you saying. I am frustrated that I have taken and put up with 4 cycles of chemo which hasn’t worked at all. I am worried that I’m going onto another treatment which will mean I may lose my hair and that if that doesn’t work I will have lost my hair for nothing, that will make me angry. I don’t have any choice, I have no control over this shit so I just have to get on with it. I’m worried that the 18 -24 months clock started ticking from February and so this time next year what will life be like I wonder? Time has become very precious and I worry for my loved ones, my kids, mom and Steve. I worry about coping with new treatment which involves carrying around a bag of chemicals around with me for 2 days. But today I am okay, I can taste things and I’m sat writing my blog whilst Richard and Steve listen to Rock & Roll football as Villa are playing. My view is of a lake, swans and ducks glide past, the birds are singing and Molly is happy so it’s a good day. After the football the plan is to hit the beach so I’ll sign off for now and catch you all tomorrow.

Book update, iBooks rejected it but errors corrected and it should be available soon. I’ll post when it’s ready for you to download. The Dropbox used so that you could download the box from the blog was temporarily suspended due to usage demand but the block has been lifted so that should work again now. The video has had over 4000 views between Facebook and YouTube and twice this week the blog has had over 1000 views in a day which is something I never thought I’d achieve so the message is getting out there and if we can prevent one other family from going through this shit then we have won hey.

Thanks for all your support, for caring and your messages. You are a constant source of strength for me and my family.

Nearly forgot, prayer demands for tomorrow for Rita are Karen, Frankie. For my loved ones again to give them love and strength to cope, for all families coping with any form of illness and for the medical teams that have to support people during their illnesses, cheers Rita