The Eve of Conference

I’m at home faced with the job of packing, now normally I would have treated myself to something new to wear. There is something about buying a new outfit that just makes you feel special, it’s a treat to yourself I think. Most men don’t understand this primal urge in us girlies but although we all have enough clothes and shoes to dress a small village in a 3rd World country, we do always say ‘I’ve got nothing to wear’ when faced with any event to attend, or is that just me? I select a few outfits for the conference day, well 4 to choose from should be enough and then for the evening do I have got a dress with sleeves that will disguise my PICC line. So for those who know me for me to not go shopping  to attend conference is massive and an indication of how I have just not really been coping with the pain. I just can’t face the shops, crowds and the struggle around them. So I don’t bother and it’s not until now that I regret it, why didn’t I push myself to go for just 1/2 hour? And the truth is I just don’t now consider it a priority, my priority is just getting there and been able to enjoy it.

I finish packing and wait for Steve to finish work at 6 pm so that we can go. Just packing has knackered me out. I have to sit and rest, I’m worried, out of breath and fearful of the journey. I consider putting make up on to make myself like better but I stare at myself in the mirror and then look at my make up bag. What does make up matter, the only people there to greet me with be BFF, Rita and Karen and they will all just accept me as I am. So I don’t bother, take pain killers and we hit the road.

The side roads are always uncomfortable but the motorway is easier to travel on. Going through the town, fear sets in, I’m moving away from my home. All the things I need to get me through each day with as little pain as possible are becoming further away, my dream machine chair, my stool for showering, my bean to cup coffee machine to name just a few items but I keep telling myself to just ‘man up’ it will be okay. Steve and I enjoy the journey, just chatting away. The full moon is beautiful. We stop for Burger King, I’m such a cheap date! and then finally we arrive at the hotel. Steve pulls up outside the entrance and gets my wheel chair.

In the hotel lobby I spot James first and call to him. He rushes over excited that I’ve arrived. I’m so pleased to see him face to face so that I can thank him for organising everything for me, we hug and I’m suddenly aware of others around me coming to say hello. Dave West, Brian Sloanne, Elaine Egan to name but a few of the senior faces of the BHS family and then HRH herself appears. Oh wow I didn’t expect to see them all. Hellos said Steve pushes me to reception, I spot Mr Muscles and then Rita, just a hug from Rita sets me off. I’m sobbing into her shoulder crying ‘I made it I made it’ as suddenly just the thankfulness of arriving being there overwhelms me. BFF arrives and Karen too. I try to pull myself together as Mr Muscles is still there and the tears just keep rolling. I look awful anyway so the tears really won’t help but I don’t care, I made it. Steve checks us in and I with Rita head to the bar. More familiar faces appear to give me a hug and say hello. Karen is a member of my team from Kingston and she has also throughout my journey at least twice a week sent me a message of love. She is attending conference as she has been nominated for the ‘Star of the Year’ award. Like all the other ‘star’ nominations that will be there at conference they all want to win it. I want Karen to win it but when Karen and I talk about the award she says that she is just content with being there to see me, to be with me again and to represent the BHS KIngston team, this makes me cry again. Whilst I’m being spoilt rotten poor Steve and BFF unload the car and carry everything to our room. They then join us and Rita gets Steve a Guinness.

HRH appears again and we are talking about the abseil in October, how I don’t think I will be able to do it and you will never guess what! HRH offered to take my place, can you believe that? I check that she is sure she wants to but yes she is adamant that she will do it for me. Wow just amazing, I can’t believe this, that she would do this for me. Then I spot Mr Bottom, I call out hello and he comes over. His hello isn’t gushing and I tell him so, well he is from Manchester and it’s grim up north so they don’t do massive displays of emotion lol, that or he is just too sober haha.

Through the evening we have a lovely time chatting away, causing havoc with mannequin displays and all too soon we have to head off to bed. Now this is where my private nightmare and worries are. I don’t sleep, I can’t lie flat on a bed, Steve needs his sleep, I don’t want to keep him awake but Steve has a brilliant idea. We lay all the pillows in a line for extra support to my back. I try it out and it’s not too bad plus the plan is to also take oral morphine to ensure I can sleep through the pain. We have coffee, tea and biscuits, instant coffee yuk and only four sachets, well that clearly wont last. Then Steve is knackered and goes to sleep.

I remain up to play my favourite game ‘wack a comment’ now it’s about 1 am and I’m very late replying to comments and to thank my Facebook friends for sharing my blog. I hope that I don’t wake anyone up doing this but to not thank people, read the daily comments and reply to them is alien to me, it’s become an enjoyable part of my day. All done, it’s 2.30 am, I take my oral morphine and I sleep :-)

5.30 am and the pain wakes me up but wow 3 hours sleep, that’s good for me. Coffee, Fag, 1/2 a biscuit no animals to feed :-( so I log online to do today’s post whilst I can.

IMG_4617So here are some photo’s of the evening, I even got my wig out, Karen wore it and looked amazing in it. I didn’t get to go in the swimming pool but the plan is to do it this evening with Karen and Rita to help and watch, BFF has agreed to swim with me but she doesn’t look that excited about it whenever it’s mentioned, lol

 

Me, BFF and Rita :-)
Me, BFF and Rita :-)

IMG_4618

 

It’s now 6.45, I’ve drunk all the coffee in the room and I’m hoping Steve will wake up as I need coffee and we have all agreed to meet up for breakfast at 8 am.

Blown Away

Well you lot certainly as ever do me proud. I knew it was the right thing to do in asking for your help in naming the calendar. The suggestions come flooding in last night. Some funny, some a clever play on words and some rude! But all welcomed. Here are just some of the suggestions that we have to consider. However the big man himself, Juddy sent me a message to say that he liked ‘Turn the other Cheek’  I liked it instantly but thinking about how people ignore symptoms I added the the word don’t and suggested back to him that it should be called ‘Don’t Turn The Other Cheek’ I excitedly ask Steve what he thinks but he said it’s the wrong play on words :-( He went to Grammar School and is super clever unlike poor me. In fact if it wasn’t for him and my mom editing my posts none of you would be interested in my story as it would probably be unreadable for mistakes both in spelling and grammar. In our house I complete the post each day and I then ask for it to be checked. This always reminds me of my school days when your waiting for the teacher to give you feedback and mark your work. I only cared about this at infant school as by secondary school I was having far too much fun with friends to care about grammar.

Anyway I am rambling on so here are some of the other suggestions:

Bumps a Daisy, Rear of the Year, The Bottom Line, Bums Away, The Bare Truth, Booty Full Bodies, Bootiful Bums, Cheers for Rears, A Bum Start, Have no Fear Rear is Here, Chums with Bums, Arse Almanac, Derriere Diary, Bottoms Up, Weeks of Cheeks, Big Bouncy Calendar, Bostin Bums and Cheeky Calendar.

Ruder suggestions were:

Together we can stop this Shit, What a Bummer and Come from Behind.

Now I still really like Juddy’s suggestion ‘Don’t Turn the Other Cheek’ and talking of the big man himself, I just really can’t wait to unleash his photo and the others into the world and I really want it to be on the front cover of the Calendar too. He as you can imagine is not a small man but he not only got his bum out for me, he went and hired costumes for the shot, he had the guts to bare his bum and make it so funny, the effort and thought that went into it is just incredible.  Now all that takes real guts and instead of being shy, he loves it all. He throws himself into the spirit of it plus he tells all of his work mates about me and raises £100 through cup cakes sales last friday. Now that’s an amazing friend isn’t it? Thanks Juddy, you really are a star to me, you and the Countess Judd.

So back to the plight of cancer sadly and the never ending pain of yesterday. Oral morphine taken on top of the usual daily drugs plus extra pain killers and I endure another 8 hours of back breaking pain. My mom even called me at one point but I just didn’t have the energy to even speak to her about my exciting day. It’s not just the cancer pain but as I disclosed the other day the drugs that I take slow my bodily functions down and although I have been (God I hate talking about poo). I only went once in 6 days and had to take laxatives to get things going again and that was 3 days ago. The plan was that I was to to take two laxative drinks a day to keep things moving. Did I do that? Errr no I didn’t. Steve says that he feels like a mechanic, that I bring my broken car to him, he fixes it and then I keep returning as it’s not working cos I keep putting petrol in my diesel car. Also since the operation if I do too much then my tummy starts to look like a bouncy castle and swells up. So that’s what’s happening tonight. I’m in so much pain, my stomach is so swollen and hard so I start taking the laxatives again. Steve goes to bed before midnight as he says that he doesn’t want to be around then it all starts to move and I don’t blame him. Nothing has happened yet apart from lots of tummy rumblings, and wind, hence the title of today’s post ‘Blown Away’ that and I have been blown away with the fund raising from everyone. Oh well I think I’ve just got to just accept that I need to take two laxatives a day and just ‘man up’ about it all.

So last night whilst I play my favourite game of ‘wack a comment’ with your comments and suggestions I’m in so much pain sitting in my Dream Machine chair with my belly exposed. Thought I’d share that mental image with you all haha. By 12.30 I’m so tired and I fall asleep. I wake at 3.30 am so that’s not too bad and start today’s post.

Now as I am going to be at travelling to Daventry to attend the BHS conference. Wednesday there may not be a post from me so don’t all panic that I’ve lost the will to live. If there is no post then the very least I will do is post up the ‘Cancer Free’ video and the link for equal screening for you to all share again as my Goddaughter Beth still wants it to be a Christmas Number 1 and also the signatures on the petition have slowed down and it’s so important that we keep that going.

Serious stuff continuing, sorry but I thought I would just share with you funding and why I love the charity Beating Bowel Cancer. Last year 80 million pounds was raised for charities across Britain by us, the generous public together with some central Government funding. I found this very interesting article which The Daily hate, whoops sorry The Daily Mail wrote and it’s worth a read trust me, just follow the link to find out what’s really happening with your money.

The figures are astonishing. There are more than 195,289 registered charities in the UK that raise and spend close to £80 billion a year. Together, they employ more than a million staff – more than our car, aerospace and chemical sectors – and make 13 billion ‘asks’ for money every year, the equivalent of 200 for each of us in the UK.

Anyway back to Beating Bowel Cancer. So last year Ian Rennie raised £6.5 million to run it’s service and for me they need every penny, a great charity with fabulous nurses who have helped me so much and I will continue to always support them. Macmillan raised £215 million pounds and no help for me, nurses funded by central Government plus I still haven’t had a reply from their complaints department! Beating Bowel Cancer raised just £2.3 million which was 54% up on the previous years fund raising. Their best fund raising event was the Decembeard which raised £330k last year. With 37 paid staff listed on their website and volunteers to support too of which the wonderful Jani (she supports me so much) is just one of them. They were also the winner of the 2015 National Fundraising Awards for fundraising charity of the year. How fabulous is all that?

Beating Bowel Cancer is the support and campaigning charity for everyone affected by bowel cancer.

We provide vital practical and emotional help – on the phone, digitally and face to face. We’re proud to run the UK‘s only nurse-led specialist helpline for bowel cancer which patients call a ‘lifeline’.

We bring patients with bowel cancer together to share invaluable experience and support, through our website, social media and major events.

Our high impact campaigns have led to the introduction of the bowel cancer screening programme, which is helping save lives, as well as new funding and greater patient access to life-changing cancer treatments.

Here is what they provided from the Decembeard fund raising of £330k. Steve is so excited to support me that he is taking part in this in Decembeard and is recruiting a man team to join him. I’m dreading seeing him with a beard YUK! But I get that for him and many men out there they want to support the people they love in anyway they can, so I’ll just have to keep my eyes closed tightly if we ever get the pain under control and make love again LOL.

CP_T-65WUAAGEqk

So back to today, I’m going to just rest up, pack and hopefully get my body functioning again otherwise I wont be able to go, as planned swimming tonight, I’ll just float around like an inflatable toy. I also wont be able to wear anything with a waist band as it will never go around my swollen tummy. Oh the joys of cancer and bowel surgery hey!

I am so worried about getting through the next two days as if I just sit I’m okay with the pain but if I do anything slightly normal like empty the dishwasher I’m in pain again. So after some advice from Jani (beating Bowel Cancer) volunteer I called Ian Rennie. Marina talked through my pain with me. I am going to increase the 12 hour slow release morphine from Thursday night. I am not doing from today as the increase may make me sick or spaced out for a few days and I cannot be throwing up at conference, oh the shame. Whilst on the phone to Marina I tell her about the £600 and about Julie, which makes me cry again and she also thinks it’s wonderful of Ant to send me the money to choose the charity on Julie’s behalf. So that’s the new plan on pain control. If this works I’m hoping I will be able to do more normal things like walking Molly Dog. I long to be able to be normal again. I’d like to be able to go out without a wheelchair and walking stick, I dare to dream this may be possible.

I will take lots of photos and be back with you all on Thursday night with a post with all the repeatable gossip and the fun that we will have. For me I’m just glad to be going. This would not be even possible without My Mr Wonderful who is taking me, HR and James at HO for ensuring I have a disabled room and all that I could possibly need and finally the wonderful Mr Grey who has agreed to drive me home again on Thursday. Thank you all so so so so much.

Finally a massive thank you to Gary Punt who donated yesterday too. He is the regional NVQ person for BHS as well as other companies and is very much a part of the BHS Kingston family. We have raised money for his local Scout Group and the wonderful Emma plus Sian have also supported him by assisting him with the kids to attend West End Show etc, see I told you BHS Kingston was a great family to be part of, thanks Gary.

And then Rita says she has raised a massive £314.00 from her and the team in Chichester, just amazing! Big thanks and love to all the Chichester BHS team. Your efforts mean so much to me and the charity. I have also received another anonymous donation of £20, thank you whoever you are.

Oh I nearly forgot the name of the calendar it will be called …….

Bostin Bums, a Real Cheeky Calendar!

Now I hope you like it and the word Bostin comes from the Black Country and means ‘great’. It’s fitting for me to have that link and I like the play on words  ‘Bostin Bums’. I hope you all like it too and sorry Juddy I did try for yours but it’s grammatically wrong so Steve says we can’t use it :-(

So normal service will return on Thursday xxx

IMG_4590Whoops and finally, I received this lovely gift this morning from someone called Teresa, now I have asked the Teresa’s I know and they say it isn’t from them so please let me know if you sent this too me so that I can thank you. Tatty Teddy is lovely and suits my chair too, he will also look great in Daisy Den so thank you very much. And now I’m really going to pack now lol

 

The Name Game Again

I know I keep asking you all for your help but I really do need it today, thinking caps on everyone and here is your challenge.

Behind the scenes of the daily blog and life I have been working with Steve to produce the calendar. I wasn’t at all in the right mood when Steve first spoke to me about it as I was having a moment when humour had been used throughout my journey with the Cancer Free video etc but there is such a serious side to cancer. Calendars have been done before and I didn’t warm to the idea at all but Steve was determined to do his bit to help me and really was passionate about seeing it through.

Thank goodness that he took this view. Over the past month we have been working with friends and family to produce the calendar. Photos have been flying backwards and forwards, Steve has become the advice centre of all technology and we have been surprised, shocked and admiring of the effort that people have gone to to produce some fantastic photos. I just can’t wait to share all of these with you all.

So where do I need your help? Well it needs a name, the Calendar needs a great name so that it stands out from it’s competitors. It needs to be funny maybe, or a play on words. Things that may inspire you whilst you are thinking is that it contains naked bums, it’s cheeky, it’s of real people with real bodies, no airbrushing and making the bodies look perfect. All monies collected will of course be going to support Beating Bowel Cancer but having the word bowel in the title is probably going to turn people off. We have been bouncing ideas around but just can’t get the right angle but I’m sure you lot will, after all you all came up with ‘Dream Machine and Daisy Den so I have complete faith in you all.

Some names we have played with are: Rear of the Year, Bottoms Up, Dare to Bare, A Round up of the Rear, The Rear Ahead,

Talking of names private messages from some of you just make me smile daily and give me so much encouragement that I have to share two nicknames with you that two of my regular blog readers have given me, the first is Mrs Costa due to the coffee I drink and my favourite is ‘Bean, the Fighting Machine’ The name bean is following the post about whether you are A carrot, An Egg or a Coffee Bean. Rita always calls me her ‘wee cupcake’ amongst other names and I find all of these so endearing but no more please otherwise I’ll just never cope lol.

Now over the weekend I have been emotional to say the least. I’m sorry that I made you all sad. Nicky my best mate from 17 years of age knows me far to well, inside and out. I would say she knows all of my darkest secrets along with my Mr Wonderful but through the blog I have bared all of those too so you are all included in that list of special people. But she has been worried about me as she has only seen me a cry a handful of times throughout the years we have known each other so for me to cry for a whole weekend is just not me at all. Following my suicidal weekend I think she fears that I’m getting depressed. She lives in Peterborough and can’t just pop round to make sure I haven’t hung myself from a doorway, so I assure her that I’m completely fine and not depressed at all. The weekend as been hard for many reasons but I don’t cry for me, I don’t cry for self pity. I cry because after all these years of ‘building a wall’ to protect myself, to not allow myself to cry as I always feared that if I started to cry that I wouldn’t stop. I cry because I can finally feel the pain. The pain of others suffering and grief that losing a loved one brings. I have embraced that it’s okay to cry to show emotion, that it’s not a sign of weakness in me but an inner connection that I have with others who know grief and now I finally think it’s okay, I don’t have to hold back the tears anymore or be strong. I can allow myself to finally miss my sister and my dad (oh shit crying again) and enjoy the pain I feel of losing them as the tears are because I loved them and miss them so much.

Now did you all see Peter Andre on ‘Strictly Come Dancing’? What a mover he is, it’s only week one and he is top of the leader board. I have to confess that I haven’t watched the others dance as it’s a long programe and it’s been a busy weekend but I did watch his dance, fantastic and the judges said he stole the show. Now we all have to support him as he really does care about people. Of all the celebrities I have tweeted, and there have been loads trust me, he and Charlie Boorman where the only ones who were willing to help me by re-tweeting the Cancer Free video. I have been shocked at this as I thought famous people wouldn’t mind helping normal people who where just trying to help others and raise money for charity, but no they can’t be bothered and when I see or read about them now I have a different view of them. I know they are busy etc but really! They come onto our screens into our homes via the TV pretending to care and be genuine but the bottom line is that only two celebrities took the time and effort to even look at my tweet. So I now think the others are just false and full of empty sentiment (I’m not bitter lol).

Talking of twitter I haven’t really used it in weeks, I spent about two weeks tweeting celebrities and hoping for help plus trying to understand the lingo but as I have not had much success I haven’t used it. I always tweet my posts from the blog and I get emails from people who have started to follow me. What a scary thought that people want to follow me lol. I am lost in the world of twittering and can only apologise to you all if I don’t get this whole thing right, I do try honestly but I have never been bilingual and I don’t think I can learn now.

So most of today’s post was written between 2 – 4 am as usual due to me not sleeping but after that I fell asleep again. Steve was on earlies and so I’m not on my own for long before the house wakes up.

Now just after 9 am I receive an email, not just any old email regarding special offers at Staples, as I seem to get one of those daily. I have unsubscribed but it makes no difference they keep coming daily.  It was from Beating Bowel Cancer, from Stuart Barber, Campaigns Director, I’ve only been invited to attend Parliament :-) part of the email details:

Your invitation to Beating Bowel Cancer’s Parliamentary Reception on Wednesday 27 January 2016, 4pm – 6pm in the Terrace Pavilion, House of Commons.

Dear Wendy,

I have great pleasure in inviting you to Beating Bowel Cancer’s Parliamentary Reception, kindly hosted by John Baron MP. This event will take place on Wednesday 27 January 2016 between 4 – 6pm in the Terrace Pavilion, House of Commons.

As in previous year’s, we hope to secure a Government Minister and a bowel cancer patient to be our speakers at the event.

Improving bowel cancer outcomes is everyone’s responsibility and at Beating Bowel Cancer, we are determined to play our part in ensuring a sustained focus on improving outcomes for patients with bowel cancer. This annual event is an opportunity for politicians to meet charity representatives, patients and clinicians and find out about the issues of concern relevant to bowel cancer patients. As well as MPs and Peers from all the main political parties, the event will be attended by bowel cancer patients, supporters of the charity, healthcare professionals and key opinion leaders.

I of course reply that I would be honoured to attend however I wouldn’t be able to go without assistance and they replied that I can take My Mr Wonderful with me as who knows what state my health will be in by January. How cool is all that then hey?

Steve and I have been active politically for years and have attended lunch and functions at Parliament before. I am honoured but not fazed by attending at all. I am not shy in my views and concerns and relish the chance to speak to Government leaders about cancer and how it feels to be one of their statistics and how much of our system seems to be just so wrong, equal screening will just be the start. So I will do my research and ensure that I get the most out of the day and it’s not just a nice chat the ministers think they will be having with sufferers. Anyone who has worked with me will know that I’m good at giving feedback LOL.

The afternoon was spent taking Rebecca to her results appointment following her recent health issues. Now the details of that aren’t important but what is important is that I was only out of the house for 3 hours due to Rebecca’s  appointment being at 2.30 pm and we weren’t called through until 4.45 pm for a 5 minute chat! After waiting for so long and being in pain I return home and hit the morphine. I worry now about conference. I just wanted to cry by the time we got home. Can I not do anything but sit, I’m so sick of pain and not being able to do normal things. When I do try to get out I am in terrible pain for hours. All this makes me so sad. I just want to be normal. Once the acute pain starts there is no controlling it apart from with morphine and just waiting it out.  Poor Steve is always concerned about me over doing anything as he see’s the pain and torment I suffer afterwards. I am however going to conference as BFF (until she hit’s the bar lol) and Rita will be there for me and I just hope that I can cope and I don’t upset them too much if I get into trouble with pain.

Thank you Karen Staves :-)
Thank you Karen Staves :-)

Talking of Rita here as always are the photos of the candles burnt in church yesterday for my prayer list. I also received a wonderful message from Karen Staves who lit candles for me in her local church back in KIngswinford, my home town. Thank you both very very much. Your candles and prayers are appreciated  so much.

 

 

Thank you Rita :-)
Thank you Rita :-)

I was just about to close today’s post and my mobile rang. It was Guy my ex boss who left the BHS family just 5 weeks ago. Who’s son has been very ill and he has been on Rita’s prayer list. We did say that we would keep in touch but with all the worry of his son we haven’t spoken for a few weeks. It was lovely to hear from him and Rita I can report that your prayers have worked again and his son is recovering well :-) He like Steve tells me off for doing too much and to look after myself more but by the end of the conversation he, like Steve gets the comfort I get from doing my blog and to continue to work, to contribute to BHS who have supported me so much. Guy can’t believe that just a few weeks ago I was able to meet him in High Wycombe and now I am relying on a wheelchair to get about. I confirm that this is sadly true but I’m not going down without a fight and the blog is my way of fighting as is the fund raising.

So that was my day, a mixed bag of pleasure and pain but as one of my favourite saying goes ‘it will be alright in the end and if it’s not alright then it’s not the end’.

I was just again about to finish today’s post when 2 more emails have come in £100 from the big man himself Juddy who raised £100 at Gatwick Airport selling cup cakes for me and the balance from Countess Juddy (his wife) of £310, she changed their planned Macmillan fund raising day to Beating Bowel Cancer. The grand total now stands at £3715.46 and that’s without our fundraising from Saturday (over £600) the remaining money to come in from BHS Kingston, BHS Chichester, estimated £173 from the wonderful Rita plus her team and plus Mr Grumpy Bum has been at it in BHS Uxbridge too. I am just so so so so happy and thrilled with all of your support, thank you all so so so so much :-) xxx Plus final good news is that the blog has been visited now by 62,304 people isn’t that all just so amazing? And I thought no one would be interested lol xxx

 

 

 

Fund Raising Day part 2

Get the tissues ready – you have been warned!

So yesterday morning I drift in and out of sleep in my dream machine chair, each time I wake I’m counting down the hours excited for the day ahead. It’s about 9 am and Rebecca is awake but Steve is still asleep. The door bell rings and Rebecca brings me the post. I opened a lovely thank you card from the beautiful Sophie who thanked me for going to her 5th birthday party and one other small letter that made me cry for about the next 2 hours and this continued drive my emotions throughout the day. Now I need to take you back in time to 1991 for you to understand the enormity of the content of this letter, how much it touched and meant to me.

Julie my sister died aged just 25 years old, she had been married only 8 months to Ant. There is a post dedicated to her if you want to read the details of that part of my life’s journey. After the funeral and as you can imagine the donations that came flooding from friends and family.  We decided that in her memory we would do two things with the money. The first to set up a fund to supply yearly study books for nurses and midwives who studied at Wordsley Maternity Hospital in the West Midlands. This is where Julie was practising midwifery, it used to be just down the road from my mom’s house and it was also where my son Richard was born.

The second thing that we did was approach the hospital to dedicate a room to my sister there, they agreed and it was called ‘The Shanian Suite.’ This was to be a room where families who suffered any bereavement during childbirth could be placed away from the main wards. We brought and decorated the room out. Matching curtains, bedspread, a radio, books and although my memory of the room now is faded we wanted at the time a room where grieving families could find peace and comfort in their mourning. Until this room was established you can not imagine the pain parents must have had to endure if they lost a child and then had to be surrounded by other parents celebrating their new born babies. The room was inspired for me as Julie had attended a birth where there were complications and they had to transport the mother and baby to another hospital, Julie had finished her shift but wouldn’t leave the family. They never got to leave the hospital as the baby died and this affected my sister deeply, the pain of the family, the suffering and grief. I can even now recall her telling me the story of this family, so sad. So the room all decorated remained in use until 2005 when sadly Wordsley Maternity Hospital closed and was demolished for a new housing estate. All maternity services were transferred to Russells Hall Hospital and the room was gone forever.

So I opened the letter and it was from Ant. He explains that the money collected to supply the library books following Julie’s death had been sat in an account for over 20 years, as the hospital had closed. He had always intended for the money to go to charity but he could never decide which one to donate it too. Now he knew, and he wrote ‘I am sure that Julie would be pleased that it’s going to such a good cause.’ That he himself had added to the money and was sure that it would now go to a good cause. A cheque was enclosed for £600 and made out in my name for me to choose the right charity for it to go to. The tears and emotions just overwhelmed me and I still cry as I type this story to you all. A final piece of my sister, past memories of our grief and just seeing his hand writing of her name brings more and more tears.

Steve wakes and asks the normal questions of how am I, how did I sleep whilst getting his first coffee. I replied that the postman had been and had made me cry. Steve read the letter and agreed that it was a beautiful thing that Ant had done and we both knew exactly the right place for this money to go.

There will be an extra Justgiving page attached to the blog to start fund raising for the Ian Rennie nurses. You may think this odd as I have been dedicating all my efforts to support Beating Bowel Cancer but this isn’t the right place for my sister’s money. Ian Rennie is a local charity and not countrywide. They have been amazingly supportive to me and I think albeit sad that they will be nursing me through to the end of my journey with cancer, they are nurses and Julie would want the people that nurse me to the end to have this money. It feels to me that my sister is trying to help me through this gift, stupid I know but it brings me comfort that through this money she is still part of my life and it’s journey. Thank you Ant, sometimes words are just never enough to express the depth of emotion we feel.

My mom is on holiday for a week and I couldn’t wait to hear from her so that I could tell her about the money. My mom doesn’t do showing emotion but she cried as I told her the story and about the letter from Ant. She approves completely of my need for the money to go to a nursing charity as it just seems so right to us both.

So I continue to cry on and off throughout the morning until BFF turns up and we head into town. Fund raising can be so rewarding and also so soul destroying. Because I’m in a wheelchair wearing the beating Bowel Cancer t-shirt etc people assume that I work for the charity, that I’m not a sufferer myself. Some people just walk by ignoring my words, not wanting to make eye contact as they fear I want money from them. These people hurt me, I just want them to be aware of bowel cancer, to not ignore symptoms, to just raise awareness and then there are the other people who came to speak to me throughout the day who just broke my heart and I openly cried with them in the middle of a busy shopping centre. Here are some of the stories:

An elderly lady who had her operation just one month before me, in Wycombe hospital, in ward 12 where I was with Karen. She is doing well and is in remission, no chemo required. She was discharged from hospital with no support, no after nursing care at home to deal with recovering from major surgery. She isn’t bitter but where was her help? What is wrong with our system that our elderly are just left!

Many others just approached me with stories of lost loved ones who didn’t survive. A man who lost his wife to it talked to me and we both agreed that bowel cancer was just so shit! An appropriate word hey, just SHIT.

Others came to give money just because they had lost too many people to cancer. A young lady told me of her mom who died young from stomach cancer. How her mom had been given only months to live but continued for a few years. She enjoyed telling me how strong her mom had been, how she rejoices in the lessons of life that her mom showed to her through her suffering, by not being a victim but to live life to the full. I can see and hear the love clearly from her as she talked. She just wanted to talk about her mom, remember her again, rejoice in her memory, feel her mom’s love, there is no other love like it is there?

A man wanted to know my story and after I shared my prognosis of less than a year he asked what was on my ‘bucket list’ I replied that I didn’t have one, that I didn’t want to swim with dolpins etc and he was shocked. I explained through tears again that sharing precious time with my loved ones and friends was the meaning of my life and I was content with that.

Then Steve said that I need to meet a man who I had seen out of the corner of my eye talking to my Steve for some time. His name is also Steve and this is his story.

Steve’s wife was pregnant and all was well, a few complications which were put down to her pregnancy. During birth it was discovered that she was stage 4 with bowel cancer and it had gone undetected. Following the birth she received two courses of chemo but this sadly didn’t work. She lived long enough to see her son walk for the first time. She died 5 years ago, aged just 43. Steve, was left to bring up their two sons. He saw us today and decided to finally do something to help in the fight against bowel cancer. He told me his story and I cried, just so heartbreaking. Us being there today may just have been at the right time for him and a turning point in his life to do something positive. We hugged each other several times before he left us as he held it together emotionally but I was a wreck, his sons were with him and I can not contemplate how hard this man’s life had become through this shit disease. Leanne from Beating Bowel Cancer has his details and will help him in whatever way she can. Just heartbreaking, his sons have no memory of their mom but he has a lifetime of grief that cancer caused to this family as it does with so many others, including mine.

I need to thank everyone again who came to help and support me. Leanne from Beating Bowel Cancer who never stopped all day, she never even took a lunch break. Mary from BHS High Wycombe who was on her day off and did over 6 hours, all my friends from my local Lib Dem family. Rebecca who did the last hour with Leanne so that I could go home, BFF and Sex Kitten too.

I returned home and then received this email from Leanne:

Ive just counted all the money from today.

It came to a MASSIVE £631.21! Just wow! I can’t believe how much we raised. Thank you so much for recruiting all those wonderful people and it was so lovely meeting everyone.

I hope you are feeling okay. I can only imagine how much today took out of you, both emotionally and physically so thank you, Steve and also Rebecca who were brilliant at the end carrying the big table.

I’m knackered so will send you a proper email next week and the rest of the photos but just wanted to let you know how much we all raised :-)

Leanne x

And here as promised are some of the photos from our day of raising money but also awareness as young people dying of this disease and so many others  that it just breaks my heart.

Me and Mary :-)
Me and Mary :-)
IMG_4583
The famous BFF trying to push me and Mary in my wheelchair
IMG_4584
Leanne & Mary with my Lib Dem family

 

There was also one other special visitor to us today, Steve’s mom. I wrote a post about him and his family, they are the reason I contacted Beating Bowel CancerSteve died at the age of just 33 years old. His mom and sister came by just to say hello. We cried together as I listened again to their story which I shared with BFF. They are lovely people, just normal like us all but struck my grief of a loved one. It was so special seeing them again today, they know the pain a family goes through with this disease, they know suffering and loss.

So not my normal post of 1/2 biscuits, fags, coffee’s, ungrateful rescued cats and spike the squirrel but a dedicated post of thanks and appreciation not just to the people who supported me today but to also the generous people in High Wycombe. It’s now 4.50 am and today hasn’t even started but I wanted today’s post to just contain all the details of the day as promised and I intend to rest up now as I suffered in  pain for the whole evening but it was worth it. If we touched people, if we helped someone and if we even made someone think to go to their doctors as they have concerns then I think it’s mission accomplished and I can cope with the pain and this will fade unlike the grief I saw today.

Final thanks to Jx and Jenny who donated even more money on top of all the other donations they have previously made, a £20 anonymous donation, Chris for his ‘pay day’ donation, my ex boss who again has already given and £242. 46 from my wonderful BHS Kingston team. The grand total is now at £3315.46 which is amazing as I thought asking people for just £1 for the Cancer Free video was enough to ask.

And final, final thanks to Rita who will be lighting candles today and saying prayers from my weekly prayer list. I hope you all have a wonderful Sunday enjoying the sunshine and have picked some daisies :-) xx

 

 

Fund Raising Day

Before I celebrate all that my day has held we need as ever to return to last night. So post for the day goes up celebrating all the hard work and effort that has been put into this by so many of you, thank you. I loved seeing photos of my BHS Kingston family and smile as I know the fun they would have had with the false bums. Sadly I’m tired too and fatigue kicks in, it’s just after 6 pm and I agree with Steve to have a quick 1/2 an hour kip! OMG this chair will just have to go as I wake to Steve getting our tea and it’s 9.30 pm! Where did the evening go? So nobody had eaten as they didn’t want to wake me up, bless them. So tea done but I’m now in terrible pain again. I slept through taking my 7 pm morphine and now my back is so bad. I had forgotten how bad the pain is underneath all these drugs that are keeping me going. So I take the ones I’ve missed plus extra pain killers and wait for the pain to ease.

I’ve missed the evening, curfew time which we all look forward to now. I need a shower and I also need to sort out my nails too ahead of the fund raising day. They have to be red as this will match the Beating Bowel Cancer colours, us girls have to co-ordinate hey. The sleeve protector for my PICC line came today so I was able to shower without dressing my arm up like a chicken drumstick in cling film which is great and I can now look forward to wearing it next week as the conference hotel has a pool and as we are going up the night before I want to swim again and feel the weightlessness that may help my back pain. If this works then Steve says that we should go swimming more often if it helps.

So I challenged you to come with a suitable name for the chair and my angel Rita came up with the perfect one, so the new chair is called ‘Dream Machine’ this is perfect as I can dream away in it at any time due to it being so comfy for me, it’s reclining system makes it a machine and both Tia and Molly also enjoy a ride on it and the name ‘Dream Machine’ implies motorbikes and that’s a pleasure that Steve and I enjoyed for years. Thank you all for the other suggestions as they were all good however I have to go with Rita’s ‘Dream Machine’.

So showered and nails ready for tomorrow I’m still in pain and still tired, Steve stays up with me until 1 am and then goes to bed. I consider sleeping in the dream machine but I think I should try bed. Steve was still awake and he tries to cuddle me without hurting me until I drift off. He knows how excited I am about our fund raising day and whether I have taken on too much but I want to be there for as long as I can, try to educate people and raise some money too, I have to beat both Emma and Teresa’s total don’t I?

I wake at 4 am as normal and the usual routine applies, feed animals, 1/2 a biscuit and a fag. I can’t take pain killers for 2 hours so I sit and watch the clock tick by, waiting for 7 am when I take morphine again.

Now Molly never normally wakes or comes to see me in the mornings, lazy dog but I think she likes the dream machine too and as she hears the sound of the chair moving she comes running into the kitchen and jumps up to join me. We have a morning cuddle together and Tia looks jealous. What is it with cats and furniture? Tia thinks that all chairs and carpets are her personal scratching posts and I’m concerned that she will ruin my dream machine. She had ruined so much of our house and furniture with her claws already.  I remember listening to a comedian once who made me laugh so much. He said that we take in cats, promise them love, we feed them twice a day, spoil them with titbits and treats, we pamper them with beds and toys, we expect nothing in return from them and what do they do? They slowly ruin your house just a little bit each day, no gratitude from them apart from the occasional love on your lap, why do we all do it hey, it’s beyond me.

 

Raising awareness and money in High Wycombe today
Raising awareness and money in High Wycombe today

So the beginning of this post was written before we headed into town to do our bit for Beating Bowel Cancer and of course to beat my BHS Kingston team lol. BFF turned up at 11 am and we headed into town. Mary and Leanne plus  local friends of ours had already been at it for hours. It was lovely to be out of the house and I was looking forward to it so much. BFF was in charge of pushing me and we started straight away not knowing what stories and people we would discover.

Now after 6 hours of fund raising and crying all day I have returned home and I’m in so much pain, I’ve had to take oral morphine plus my normal drugs just to cope. I have so much to share with you all about my day but it will have to wait until tomorrow as I’m sure you will understand that I need to rest.

I then find out that the lovely Rita has been fund raising for me too today and her team has raised £173.00, OMG I’m so thankful to you all in the Chichester BHS store. I can’t thank you all enough.

The grand total and photos from today have yet to come in but we raised over £500 :-) smashing Emma’s total, sorry mate lol.

Don’t forget to support the lovely Peter Andre tonight in Strictly Come Dancing, what a hunk he is and we are supporting him as he retweeted the Cancer Free video, bless him.

Prayer list for tomorrow Rita is for Karen, Frankie, for Guy’s son recovering from his surgery, my loved ones, friends and family and for all the people I met today who have lost people to cancer or who are suffering from it now.

Full details and more tomorrow I promise xx

 

 

 

Friday is always a good day.

But before we get onto Friday a quick catch up on yesterday. After my emotional day and as Steve was on the early shift we decided a short trip out was a good idea. On the M40 near Uxbridge there is a park called Northala Fields. It has 3 mounds of earth that create false hills, these were made out of the rubble from Wembley Stadium when it was rebuilt. In front of the mounds they have laid a lovely natural park with small lakes and lovely woodland walks. Now the best thing about this area is that it is super disabled friendly. Unlike parks in Wycombe you can walk around it and Steve can push me in the wheelchair. Molly dog is just so happy to be out and having a good run. The sun was still out and it was a pleasant evening. There is even a cafe bar there with the all important toilets just in case. I think that this park may be visited more often by us as I miss not walking the Molly but local areas are just not as disabled friendly. I’m beginning to appreciate the wheelchair now and see why Steve bought it, our walk would not have been possible without it and it gives us choices but there is something so wrong for me being pushed around by Steve. I was once fit, healthy, full of too much energy and a zest for life being pushed because I can’t walk far :-( but I’m not going to dwell on negatives as that’s being a victim and that’s not me, so ahead of conference next week I’m going to ‘pimp my chair’ with stickers, embrace the freedom it can give me and learn to love to be pushed around.

We return home but it’s about 7.30 ish and once tea is done and I’ve caught up on some comments on Facebook and the blog before I know it its 10 pm and I am so tired as I haven’t slept at all, just cried through the day really. Steve says to sleep and I agree to just 1/2 an hour. 11.30 I wake up. Now that’s the new downside to the new chair, it’s just so comfy that I can sleep too well in it. Steve stays up with me until 1 am as I know won’t sleep and then he goes to bed. I decide to sleep in my chair tonight and I drift on and off and at 6 am I’m up as usual with Tia cuddled in with me, she can forget taking over my chair the ungrateful thing. Now chair needs a name too I think, any suggestions? I’ll leave that one up to you as I know you lot are good at this game now :-)

When I logged online at about 1 am I received emails to say that there had been donations via the Justgiving site so this excites me. A massive thank you to to Graham and Karen Staves, Lorraine and Steve, an anonymous donation of a massive £60 and finally a special mention to Sapria and her sister who knows Teresa. Now every year they donate £50 to ‘The Masden’ in memory of their mom but this year they have decided to give it to Beating Bowel Cancer to support me. What a lovely thing to do, I’ve never met any of these people and yet there kindness means so much. All this makes the grand total as of Thursday night a heart warming wonderful £3033. I never dreamt that you lot would be so supportive, thank you is just never enough sometimes for me but it comes from the heart from me to you all.

Friday – So I am awake, it’s Friday and it’s also pay day, nothing quite beats the feeling of pay day hey! A day when just for a few hours before the bank/creditors/household bills and direct debits get hold of it all it just feels so good. I always think there is way to much month at the end of my money and October is a 5 week month too, now that’s a long month :-( but it’s still pay day. How did it get to nearly October, where have the months gone too? Rebecca had a friend come to visit yesterday, Sammy and she gets married next year, Rebecca is the maid of honour and is very excited, as I am for her. Steve makes the comment as we all do in these moments that the time will soon roll round to the following August when all the planning comes together for their special day. I quietly think, will I still be here? What physical state will I be in if I am? I don’t say anything but after the doctors visit and nobody in the medical profession even remotely saying anything to the contrary about my prognosis stopping or changing time is something I treasure so much now.

Confession time – whilst at the doctors yesterday I was praising the Ian Rennie nurses that she had arranged to deal with my palliative care, who are just wonderful. I asked about my Macmillan referrals and that I had never heard from them. The doctor looked at my notes and a referral letter was sent incorrectly and she couldn’t see any other referrals but did say that the Oncologist team would have referred me. Now I feel bad as I have been a little down on Macmillan and what I thought was their lack of concern. The phone call I made to them doesn’t count as you cann’t refer yourself to them. When I talked this through with Steve he compares it to how Beating Bowel Cancer dealt with me. I phoned them to just say hello and that I wanted to help and get involved, they didn’t ask me to jump through hoops for help, they didn’t ask for proof of cancer they just accepted me and offered a nurse to talk to me straight away. This was the day that I found out I was stage 4 as no one else had the balls to tell me. Steve and I relive that day and it’s trauma but isn’t that how a charity or an organisation should be run, from a point of caring and support first, not do you fit the correct criteria for help and have you been referred correctly?

Fund Raising –  Okay so as you have all been busy raising money for Beating Bowel Cancer I wanted to share some photos and fun that has been going on today. Now sadly Kingston BHS gets more coverage as I just love my team and I’m sure you will understand that.

Gatwick cakes and £100 raised :-)
Gatwick cakes and £100 raised :-) thanks Ian

But before that Ian Judd devoted part of the Macmilllan coffee morning to Beating Bowel Cancer and raised £100, thanks Gatwick Airport Team. Teresa Judd has declared a total of £300 raised yesterday and photos are on yesterday’s post. A fantastic effort, thank you.

 

 

 

 

IMG_4568 IMG_4566

 

IMG_4574Kingston raised £240.46 and here are their photos of their day and the fun they had.  So Teresa is winning so far but it’s my turn tomorrow so lets see what I can do with friends from High Wycombe, Leanne from Beating Bowel Cancer, Steve, Rebecca, Ian Rennie, BFF and Sex Kitten to help I’m hoping to be the winning team 😉 but the total will be revealed tomorrow. Whatever we raise over the last few days £640 has been raised and I am so grateful, thank you all as I really appreciate all you have done.

 

So I am really looking forward to tomorrow and seeing everyone who comes to support us.

Privately I am still feeling strange about the next 12 months and what they may hold. Behind the scenes of the blog friends suffering who share their medical  and personal fears with me and I worry so much about them. I can’t write about it on the blog as it’s not right but they are always in my thoughts and I am glad that people share their personal pain with me. If I can help anyone I will even if it is just a friendly ear. I also privately get so much support and love everyday that is also hidden from the blog but I wanted to just say how much I appreciate you all. We all have our demons, fears and pain but we are never alone in it.

Final thanks to Tammy who sent me some wall art for my Daisy Den when it arrives and to Steve who has ordered me a thing to go over my PICC line so that I can shower and swim next week, thank you my Mr Wonderful xxx

 

Feeling Loved

So last night I checked the weather forecast as if it is due to rain in the night I stack up the cushions in the chemo gazebo to protect them from the elements. I went to bed at 2 am and as previous night and I’m awake at 4 am. The usual routine applies 1/2 biscuit, coffee and a fag. Tia the ungrateful cat is ready for breakfast but Molly is as ever is still asleep.

Poor chemo gazebo on her last legs :-(
Poor chemo gazebo on her last legs :-(

The rain in the night has damaged the chemo gazebo and it had fallen down on one side due to the leg breaking. This makes me sad as the £20 Steve spent as a prototype to see if it would be okay has given me so much joy and enabled me to be outside throughout the summer. It has also become a giggle that friends and visitors look forward to, the famous chemo gazebo shot for on the blog. I look at her all broken and I feel like I am losing a good friend. Stupid really hey. Steve has tried to put her back together again but I fear the tip will be her final resting place.

I settle into my lovely new chair that we got yesterday and it’s just so comfortable that I work from 5 – 6.30 on project work and then I fall sleep in my chair as get another 1 1/2 hours extra ZZZ’s. This is fabulous for me but when Rebecca wakes and see’s me asleep and so comfortable she doesn’t even make herself a cup of tea as she doesn’t want to wake me up, bless her. Mom however when she woke was straight at the kettle and I woke up but at least I’ve had a bit more sleep.

Platform ready  for Daisy Den :-)
Platform ready for Daisy Den :-)

The platform for the Daisy Den was completed today, thanks Frank and his team. We just need to wait until it’s dry and then we are ready for delivery of Daisy Den. It’s getting closer and closer and I am so excited. Steve calls it his labour of love for me in building it and he is excited too.

 

 

 

I had to go to the doctors today and its the same doctor that I saw when we were desperate for help due to my pain, she was the one that organised for the Ian Rennie nurses to deal with my palliative care. I go into see her and I apologise for crying all over her and then I cry all over her again as we have to talk about my prognosis of now being under a year due to the first chemo treatment not working and completion of forms to access the DS1500 form. This done and extra drugs ordered I cry again as I leave her and she hugs me. I’m having an emotional day today of crying.

I then have a call from Amanda, HR at BHS regarding the conference and arrangements for next week, plus just a general catch up as she always does to support me. I cry throughout this conversation too. I told you I was having an emotional day. Steve gets tissues and more tissues as the conversation goes on. I am just so glad to be going to conference to be part of the business as I missed the last one. I want to live, I want to be with people, to share the experience of conference, to pick daisies and have a laugh as we always do at these events. I look forward to just talking and seeing people that I haven’t seen for a while. So whatever state health wise I’m in next week I am going and I’m going to have a bloody good time :-)

The winners, animal cakes yummy :-)
The winners, animal cakes yummy :-)

The other reason that I’m so emotional and the title of this post being ‘feeling loved’ is that I am blessed by having such wonderful family and friends. My chair means so much to me, thanks mom. It has made such a difference in my comfort in just 24 hours as the chemo gazebo is on her last legs. Then I get all the support from Teresa and Emma with all the wonderful cakes that have been baked for the fund raisers over today and tomorrow. Teresa asks me to even judge the best cake.

 

Emma's been baking all day for me too
Emma’s been baking all day for me too

My BHS Kingston family have been sending me messages of excitement and support for tomorrows event. Even Vaughan and the Uxbridge team have been at it and their total fund raising should be in soon. All of this, every penny goes towards such a wonderful charity and means so much to me to help them but I couldn’t do it without such amazing help from you all.

 

My favourite cake effort from Ruth Powers a friend of Teresa's and doesn't even know me but what effort, Bum Cakes, just amazing
My favourite cake effort from Ruth Powers a friend of Teresa’s and doesn’t even know me but what effort, Bum Cakes, just amazing

I had a text from Jani this morning who is a volunteer from Beating Bowel Cancer, she is in contact with me often, helping me with advice or just offering to talk to me when I can’t sleep at anytime day or night. I’m sad to read that another member has joined the forum and they are only 22 years of age! This makes me so sad and as I tell Amanda about this on the phone later it makes me cry again. I wish I could stop the pain and heartache that I have seen my loved ones go through for others, I wish I could take all the suffering away, theirs and mine but I can’t and we are all in the hands of the medical world to try whatever they can to extend our lives. This however means suffering and hard core drugs. None of this is easy but whenever I hear of someone else joining this shit journey it just upsets me too much.

So it’s a shorter post today as I am emotional and overwhelmed by all your love and support I get everyday. Sometimes when I sit alone thinking I often wonder how do I ever repay you for all this, how do I say thank you to all the special people in my life but the truth is sometimes their are no words that are ever enough and so I won’t even try today. I hope that you all get my point as I type this whole bloody post through both tears of sadness and overwhelming joy of being so lucky and blessed to have you all in my life everyday even if it is via the internet.

 

Relief at last, in more ways than one!

So with the days post done and posted up. The normal routine of the household continues here. Rebecca has returned to her evening Maths class, so she eats early and goes there for 7 pm. Steve takes her and whilst he is out I start the dinner. We have planned spag bol, my least favourite meal but as we plan the meals for the week in advance I always think that they should have what they want whilst I can’t normally taste anything by now. That side effect is kicking in slowly, blurh.

Steve returns and I just can’t face eating it so I settle for a salad and anti sickness pills. Plus another laxative drink as I am determined not to have to go through an enema tomorrow. Can you imagine the embarrassment? The house will be full of builders, Steve and mom downstairs knowing that the nurse will be inserting a bomb up my bum and just waiting for the explosion. Now just yesterday I took 4 lots of laxatives and nothing happened. The maximum dose is 8 which is for a complete blockage of the bowel. I’m up to number 5 by now and still nothing, not even a stomach rumble or wind. Steve picks up Rebecca for me at 9 pm as I dare not travel far from our loo just in case. Number 6 is taken and still nothing.

Now curfew time tonight I decided that instead of having fun we just spend 1/2 hour freeing up the plastic storage boxes out of the loft throwing some of our real junk away that we have stored for years. These boxes will then be used to take the three man drawers of tools out of my kitchen into the garage so then I can take control of my kitchen again. When I went to the hospice and they advised me to come up with a wish list, the only things I wanted to do were to sort out the garage and the loft. I don’t want to swim with a dolphin or climb Mount Everest but I do want to sort out these two areas as if ever Steve wanted to sell the house after I have gone he just would never be able to face doing it. I have to prepare this house for him and Rebecca and although my suggestion was greeted with no enthusiasm at all, I stuck to my guns and 5 boxes of rubbish from the loft were cleared and I have cleared out the man drawers :-) Girl power hey!

As the evening draws to a close Steve prepares laxative drink number 7 but I went for a wee first and Hallelujah I didn’t have to drink the now prepared drink, things were starting to move at last and the relief of that was amazing. It was one of those moments when you want to shout out loud to announce it, hire a professional Town Crier to ding a bell outside your house to say ‘oh yea oh yea oh yea Wendy’s bowels have moved after 6 long days’ whilst I dance up and down the street waving my knickers in the air. I hope this illustrates how happy I am.

So today is going to be consumed with the hospital. Last night we were called to say there was an MRI scan cancellation and would we be able to take the appointment, the answer of course was yes. Frankie is in for chemo so I want to see her and the bum bag of drugs connected via my PICC line has to be removed today too so I get them all planned in together.

Tia being grateful for once
Tia being grateful for once

This mornings usual routine didn’t go as planned as no Tia (the ungrateful rescued cat in sight) Molly didn’t even come to say hello is it was so early. Coffee was normal but the 1/2 a biscuit was replaced by a full biscuit which also came from Jane in the Isle of Wight, very nice it was too and much like a Penguin chocolate bar, very chocolatey, thanks Jane. Tia eventually turned up and after she had eaten she came for some love which is unlike her so we had a selfie taken together for you all to prove that she loves me really.

I don’t have an appointment for the results of the MRI scan but Steve and I have enough experience now to know that if there are any problems whatsoever they call you up. I have never had an MRI scan before but I know that people don’t like them due to the small tube you go into and the loud noise the machine makes. I ask Steve to check if I have to have nil by mouth before hand or drink my own body weight in water as you have to do this for CT scan but with an MRI scan apparently not, so happy days. The procedure can take up to 90 minutes which involves you lying still. Now last week this would not have been even possible due to the acute pain when I lie down but I’m confident that with the new drugs I will be fine.

Talking of drugs I thought you may or may not like to know the drugs that I now take just to function. These confuse me and I’m always checking with Steve which ones I should be taking when. I blame chemo head. so they all have to be written down in a book so that I have a complete record every day.

  • 1st thing – 1x Lansoprazole – tummy protector for the drugs to come throughout the day
  • 7 am – Zomorph – slow release morphine,which slows your bowels down
  • 8 am – Gabapentin – the nerve pain killer, which slows your bowels down
  • with breakfast – 2 x Dexamethazone – anti sickness pills following chemo which mess up your sleep pattern, which slows your bowels down
  • with lunch – 2 x Dexamethazone, more anti sickness pills following chemo that mess up your sleep pattern, which slows your bowels down
  • 4 pm – Gabapentin – the nerve pain killer which slows your bowels down
  • 7 pm – Zormorph – slow release morphine, which slows your bowels down
  • midnight – 1 x Gabapentin – the nerve pain killer which slows your bowels down

So you can clearly see why my poor bowels stopped for 6 days. I will have to take laxatives on top of the list above everyday until we find the right daily amount as I have learnt now not too leave it so long before I confess to my problems but I, like many, don’t like talking about poo.

Mom comes with me for the MRI scan, all jewellery removed but at least I don’t have to wear a gown of shame. The choice of music for me to distract from the noise of the machine is Jazz or Motown, now Steve will be impressed as I don’t like Motown but it’s that above Jazz any day. You have to lie still on a hard bed that fits into the the machine, they can talk to you and there is a panic style button if you need to talk to them. The important thing about this scan is that you have to be still. There isn’t much room in the tunnel at all but with your eyes shut it doesn’t matter. My problem is lying flat and still. As the time goes on the pain starts in my back and leg. I struggle to hold the position as the pain just keeps coming and ‘The Tears of a Clown’ is just not helping either. The weird loud noises vary from loud bangs to machine gun fire. They count you down, 8 minutes, 5 minutes and then 3 minutes, how long 3 minutes can seem hey. Finally I’m out and free but it’s set off the pain and now I’m back to being bent double and walking strangely again.

I miss Frankie on the Sunrise ward by about an hour :-( but we will eventually meet up as her treatment is every 3 weeks and mine every 2 weeks.

My new chair :-))
My new chair :-))

As DFS is only 1/2 a miles drive mom and I still go as I just want to see the reclining chairs and to try them. Now my mom can’t resist a bargain and they have one and it’s just perfect but I don’t have the money. Mom insists on buying it for me as she knows what little sleep I get and if I can’t be outside in my chemo gazebo then I do struggle to get comfortable on the sofa in the kitchen. I’ll pay her back but it’s coming today and it means so much to me, thanks bank of mom, you are a star.

Frank and the Daisy Den foundations
Frank and the Daisy Den foundations

We return home and the progress of Daisy Den’s platform is coming along nicely :-) with good weather ahead of us it should dry quickly too. Now we just need delivery of Daisy Den to be nearer to 4 weeks than 6.

 

 

 

 

Massive thanks to everyone who has decided to change their planned fund raising this week to Beating Bowel Cancer. Send me your photos and I will put them in the blog. Thanks to Leanne again from Beating Bowel Cancer who has organised a full fund raising pack to be delivered to my beloved team at BHS Kingston tomorrow for them to make the day a success, Karen you will have everything you need so go girl and the team as I know you will make me proud. The challenge is to beat High Wycombe’s leading total of £153, I know you can do it, I have every faith. Now there’s a challenge too for you Mr Grumpy Bum and the BHS team at Uxbridge lol :-)

IMG_4533Now I know us girls can be emotional and we are better sometimes at expressing our feelings but yesterday I received a text from Mr Vines who is on holiday. Now he could be on the beach, getting drunk, sight seeing or whatever he normally gets up to on holiday but instead he goes to a church to light a candle for me as he is following Rita’s footsteps. He isn’t a religious man by his own admission but I was just so touched that he did this for me whilst on holiday. Thank you Mr Vines, it’s appreciated so much as is all the daily love and support that I get from you all. It really does help me every day, thank you.

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And finally a massive Happy Birthday to our niece Cerys, I hope you have had a lovely day and we all send our love to you xxxxx

 

 

 

 

 

TALL

TALL – stands for Thanks, Appreciation, Love and Loo

Okay so in that order

Thanks – I need to say a massive thank you to 2 anonymous donors on my Justgiving page and to Janet from part of the BHS family (she runs the most organised, team spirited, cleanest store I have ever seen and inspired me along with Mr Muscles at a meeting one day in her store). Lorraine who I had the pleasure of working with in Oxford Street for M&S. Everyone who shares my blog as in 3 months we have had 58,126 hits. To everyone who has shared and signed the petition for equality in bowel screening. For everyone who has shared the Cancer Free song which has now had 5980 views between Facebook and You Tube.

Appreciation – for all your fund raising efforts. Countess Judd has, like BHS Kingston, decided to change their planned Macmillan fund raising days this week to fund raising for Beating Bowel Cancer. There are rumours from Mr Grumpy Bum that BHS Uxbridge are also planning fund raising. Every contribution no matter how large or small to this wonderful charity means so much to me. Last year Macmillan received £215 million pounds in donations from you the public, and for some people they can’t thank them enough and I respect that and their experiences. Me, I phoned them myself, had countless people contact them on my behalf, had 3 doctor referrals and still they didn’t bother! So sadly that was my experience of them, plus don’t even get me started on their information leaflets! To everyone who has contributed to the calendar so far and for the photos due to come in still. To those who have left a review for me on iBooks, now the book has all 5 stars by everyone, now I expected this from my hubby but there are names that I don’t know on there also giving it 5 Stars. If you haven’t given it a review please do consider doing this for me as it will help spread awareness to all – I am sharing a real story about life and not just about cancer.

This Saturday we are doing a local fund raising and awareness day in my home town of High Wycombe. We are starting at 9.30 outside the Library by M&S. Friends from my Lib Dem family have pledged cover each hour until 2 pm. BFF and Sex Kitten will be there. Steve and Rebecca too, I plan to be there between 11 – 3 and Leanne from the BBC charity will also be there. If you live in the area, if you want to join us to help or just if you are just out and about on Saturday come and say hello, bring your unwanted small change too. If you need any help, advice or just someone to talk to about worries or concerns come and see us.

Love – I am surrounded by love and support every day from my immediate family and devoted hubby, from friends far and wide across the world, from readers who don’t know me but have read my story and just care and all of your love gives me strength to keep going everyday. Yesterday I got a private message from a friend and it just made me cry as I read it out to hubby. Now this blog was never about embarrassing anyone but me so I will not reveal who it is from but they will know.

Here’s what I wrote to you on the 27th of May 2015 but never sent: “You may have a long road ahead, but I know that you’re going to get through this Wendy – I just know it. Just like I knew with my auntie. They gave her 6 months with lung cancer in 1989 – She only died last year (and it wasn’t from cancer.) She simply refused to accept it. I think the power of the mind is stronger than any medicine, but the two together can work wonders. x” You still have a long road ahead of you my Lovely, but I believe it more now than ever. This just goes to show that even when it’s so bad that you can’t go on, miracles DO happen. Don’t you ever, ever, EVER give up – we’re all here fighting with you, every step of the way. x

Now this touched me because it reminded me oh how low I was last weekend, that I just wanted an end to all my suffering but that I came through it because of you all. I have received beautiful messages every day. I love it when you have the courage to post them on the blog as they will be there forever and be part of the next book, your words and mine together on a daily record of journey through all of this.

LOO – now as much as yesterday was a fantasic day and it was there is a problem that has been brewing but I’ve not shared it with you all as it’s about my all time favourite topic of going to the loo. Now all of the medication that I take slows the body down, including the bowel. On Sunday night I had to confess to my drug lord that I hadn’t been for days. So that night I took laxatives, nothing happened, slight wind but nothing else. On Monday after being to the hospital I was told this was now getting serious and to take more but if it didn’t work I had to contact them for some ‘rocket fuel’. So yesterday I took more, nothing happened. An hour later as instructions direct I took more and nothing happened. At 11pm I took more and nothing happened. Today is day 6 without any movement at all and my tummy is swelling up. I myself am now getting concerned as you forget that I have a 1/3 less storage area and any extra pressure could cause complications to the surgery site. I will continue today taking them as you can take up to 8 in a day but we may need extra help, ‘oh my days’ the joy of life hey?

Last night I stayed up until 1.30 and last drugs taken I head up to bed. I slept in my normal position with only a mild background ache, you can’t call it pain and I woke at  3.50, that’s 2 hours continual sleep which isn’t a lot but it meant a lot to me, just to go to bed and lie down and not be in agony. I think I only woke up due to Steve snoring which is something that he doesn’t normally do but it woke me up it was so loud. Now due to not sleeping for days I hadn’t had the usual routine to report but today it was coffee, 1/2 a biscuit and a fag as normal. Molly strolled into the kitchen to say hello but no sign yet of Tia (the ungrateful rescued cat) her routine is really out of sync due to the last few days but she will appear when hungry enough.

My wiggy chemo gazebo shot
My wiggy chemo gazebo shot

So after yesterday’s post the more observant of you spotted that as promised I didn’t post a wig photo so as I could never let you all down here are my wig photos and all feedback good or bad is greatly appreciated. The funny thing was that although I have a wig I don’t have a wig stand to place it on, these don’t come free with the wig. On the draining board in the kitchen was the vase that came with the flowers that Rita sent to me when I first came out about having cancer. It was draining as the lovely Louise LoIMG_4531we had sent me flowers for my Birthday and they had sadly come to an end. Now the vase is head shaped almost and now it has doubled into a temporary wig stand too, see Rita how fab is that a vase/wig stand, who knew hey LOL

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Me trying to compete with ‘Sex Kitten’

 

Daisy Den update – day two of platform construction –  there is no update as rain has stopped play. It’s rained here all day but tomorrow’s forecast is much better so more photos then.

Spike the squirrel has not been seen due to the extra activity in the garden but I just know that he is watching from a distance biding his time to pounce on Molly’s balls!!!

My Ian Rennie visit was with the lovely Marina, we discussed the success with the pain relief, she is delighted to see me mobile and free from pain. We discuss the DS1500 form which Countess Judd advised me about, she she has already got these forms for me and is sorting all of this out for me. I’m not worried about the forms meaning of end of life as I’m not a statistic and I will continue to work daily with a positive attitude and with your help and love I will take each day, enjoy it as best I can, appreciate the beauty in everything and give thanks for every moment as none of us know what tomorrow brings. I will also continue to spread awareness, to stop anyone else going through this heartache would just mean so much to me.

Marina is very concerned about my lack of ‘movement’ and if I don’t go by tomorrow then a poor nurse has been organised to come to my house to give me an enema!!! What was that I was saying about seeing the joy in every day LOL. So since Marina has gone I have taken another 3 doses of laxatives and still nothing! I have to go today or its up the bum action for me tomorrow.

Once Marina has gone I hit the wall of tiredness and sleep outside in the chemo gazebo for two whole hours, wow in no pain and wake still in no pain. This is just so wonderful compared to the endless days and weeks before we had help from Ian Rennie as they have really taken ownership of my care and work so well with my GP to get me the right combination of drugs to improve my quality of life.

We have just received a call for Wycombe hospital to say that there has been a cancellation and I have my MRI scan tomorrow at 12.10 so that’s good news too. It’s been another good day for me and my loved ones (apart from dealing with the idea of me now being classed as officially terminal) who have been relieved at seeing the new mobile pain free me :-)

Final thanks to Jane from the Isle of Wight who has sent me a piece of daisy rock and a lovely Daisy card. Also to Josh who is helping us to finalise the photos for the calendar and to Richard’s Army mates who have been game and shown their bums too for the calendar today, the photos are amazing and again I can’t wait to share all the photos with you all and the world.

 

Hope at last

Last night

We were expecting photos for the calendar to come in tonight from the Juddy’s but nothing had arrived. I was excited to see them. I know that this is Steve’s project but I have been amazed at the effort that has been put into the photos so far and I think it’s going to be a real success. We don’t have perfect bodies and we aren’t professional photographers but that’s actually what I love about the photos so far, they are real. Real people showing their real bodies, not airbrushed or altered in anyway.

Steve announces that he has received an email from Teresa. Now I’m super excited and also a little worried as what do we do if theirs or anyone else’s that comes through isn’t good enough? I need not have worried OMG the photos are fantastic and now I just can’t wait for it to be finished so that we can show the world. The effort that the Juddy’s and others have put to in these photos is just amazing. I am overwhelmed at the effort, passion and commitment to producing these photos for me. I love that people that are becoming part of my journey, the video first and now the calendar. I’ll have to come up with another wacky idea just to keep the fun going. I also enjoy a long chat with Teresa, which wasn’t really allowed as it was curfew time but after seeing the photos I had to talk to both her and Ian to say a massive thank you to them both.

Now I don’t want this blog to turn into my sleeping post but I have to share the good the bad and the ugly with you all as I’ve always promised it’s ‘warts and all’ so last night the pain in my back started to increase from around 10 pm, I took painkillers and knowing the signs I was now dreading the night ahead.

Steve was on the early shift today so he wanted to go to bed before midnight. Mom and I stayed up to watch the XFactor but unlike other Sunday’s episodes it was 2 hours long so we only watched ½ an hour and then mom went to bed.

I stayed up to play my favourite game of ‘wack a comment’ and to take the last drugs of the day.

Drugs taken I always like to give them at least ½ an hour to work before I try to sleep. Now the plan was for me to take 5ml of oral morphine before bed so that I can sleep. I’m not sure about this amount so I wimp out and take 3 ml so that I have 2 ml in reserve. Morphine taken I head off to bed at 1.15 am.

As soon as I lie down the pain starts to build and build, I toss and turn and toss and turn. I even try to sleep on my front, which was something that my mom suggested I try. Nothing worked at all, I gave it ½ an hour and was back downstairs at 1.45.

I could have taken the other 2 ml of oral morphine but I wasn’t feeling well. I had a headache and it felt like I had a hangover but of course I hadn’t had the fun of drinking first.

At 2.30 as I can’t now get comfy on the sofa in the kitchen I go into the chemo gazebo and although there is a cool breeze it’s refreshing and lovely to be outside.

Between 2 am and 7 am I think I got about 2 hours sleep as once the intense pain starts it won’t stop. I didn’t call Ian Rennie nurses as I didn’t want to take any more morphine. The pain is not as bad as the previous night so I just wait it out.

Rebecca, mom and then Steve wake up and they are all disappointed that yet again I have had no sleep really. I reassure them that the pain is better in the day and therefore we have to give the new drugs a chance, plus if the tumours are pressing on a nerve then the pain will be worse when lying down.

I checked the BBC news this morning and I was encouraged to read that Cancer Research UK has been a driving force behind a trial to test for bowel cancer in different areas in Britain from 55 years of age. As I read the article I’m sad. The take up rate for the test was poor and even less people did the test from deprived areas. 41,000 people each year are diagnosed with bowel cancer and of those 16,000 die. Mark Flannagan, the CEO of Beating Bowel Cancer has previously said:

“it’s unacceptable that there are CCGs in England that diagnose less than one in three patients at an early stage.

“If they all performed as well as the best, thousands of lives could be saved and millions of pounds could be freed up to be used for other bowel cancer treatments, which patients are frequently told are unaffordable.

Every penny that we’ve raised and others like me go towards keeping him and others in their positions in order to raise awareness, assist research and for Mark to influence central government.

Day one of Daisy Den
Day one of Daisy Den

Now I’m excited this morning as the builders are due to start the foundation work on Daisy Den. As promised they arrive at 9 am and once builders tea has been supplied the ground is marked out and I sadly have to leave them all to go for chemo.

Mom drops me off and I head to the Sunrise Ward. I struggle walking to the lift as I’m carrying my bag. The lift took ages to come and the dragging pain in my leg is hurting as is my back. The usual nurses are there and they all greet me with smiles and as I get to know them the conversations have gone from poo to how was your weekend, the latter being a much nicer topic I think. I select a window seat in bay 1 and the chair worries me, as I know I have to sit in it for over 4 hours. I ask about my CEA levels (cancer markers in the blood) previously they were 4.4 and then they increased to 6.6 and the results from Friday are that they have reduced to 2.7. OMG I text Steve straight away with the good news and as these levels are the same as a non smoker he questions my smoking levels and clearly I need to increase my fags, lol only joking, but finally some good news. Dare I dream that this chemo is working and may extend my prognosis?

I get myself settled and start today’s post as the treatment is given, as the time goes by as with the first cycle the pain starts to ease. Just over 2 hours into the treatment Mary from the High Wycombe BHS team comes to sit with me, she arrives with Costa coffee and a chocolate muffin. We sit and talk for about another hour and I then need a wee. Without thinking I stand up and walk normally, I’m so excited at this, I just can’t believe the difference in me. I return to Mary and ‘wiggy woman’ arrives and we go through to her salon (which is not a salon at all it’s just a treatment room). Mary comes with me. The first wig I try is fantastic if I was on the game, it’s full and long and very sexy. We agree that its lovely but slightly wig like. The second one is amazing and I have fallen in love with it. I joke that I’m excited to lose my hair now. I confess to ‘wiggy woman’ that it’s her nickname and the nurses all know about the nickname I have given her. She loves it and laughs. She also remarks on the difference in me from just two weeks ago when she said that I looked ill and she remembers that I was relying on my walking stick, as today I walked in there without it although I was still connected to the drip wheelie thing. Mary even tried on the wigs and we all had girlie fun with the different looks. I hug ‘wiggy woman’ as I just have to, she has just made cancer and the possible side effects fun and I appreciate it so much.

Mary and I returned to the ward with me wearing the wig, I love it so much that I’m going to wear it to go home in to see what their reaction to it is. The nurses love the look and I pose and pout to make them all laugh. Treatment over I text Steve to tell my mom to come and get me. I walk out of the ward holding my stick not using it, I’m smiling and happy. Mary carries my bag and we stand at the front doors wIMG_4503aiting for mom. It’s actually Steve who picks me up, I say goodbye to Mary with a hug too and get into the car. We chat on the way home but Steve says nothing about my hair. I walk into the house and my mom takes one look at me and says ‘wow’ that’s amazing. Steve then finally notices and we all spend the next hour just happy, happy about the CEA levels, happy that I’m feeling so much better, happy with the wig look and happy that the work has finally started on Daisy Den. Here is the progress they have made in just one day.

So it’s been a good day, whatever tonight brings I have had a great day and I’m confident that the new pain regime will work and that I have hope of being able to live again soon, do normal stuff like driving, walking the dog, hugging my hubby, lying flat in bed without pain, visiting friends, dare I say go into work and all the simple things that I have missed out on lately and I long for everyday.

Moo the Ood
Moo the Ood

I did promise you a photo of Molly’s new toy which Nicky brought for her, it’s amazing and when it’s dark she looks like an Ood (this will only make sense to Dr Who fans, so that’s just you Mr Grumpy Bum lol and my hubby of course). Thanks Nicky and we will enjoy this toy during the long winter months.

 

 

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Finally a massive thank you to Rita who hasn’t been feeling well lately but still went to church with my prayer list. Here are the candles see lite for me, Karen, Frankie, my loved ones and for peace for everyone, as that was my prayer wish list for this week. Thanks Rita, our angel xx