Warts and All – On Location from Faulty Towers Ward 10 – Stoke Mandeville

Okay so I’ve been hiding away from you all but there is a very good reason and I will explain. Before I do all that I just need to explain what has happened today, meaning Friday 23rd October.

This post is going to be a long one so get your tea/coffee/wine nibbles etc ready. Kirsty don’t read this is the bath and all of you toilet readers please don’t read it there as your bum will get cold. Runners and commuters make sure your commute is long enough to be able to get through this epic post. Okay so are we all clear? Then I will begin, I will start with today’s events about the Abseil.

So the plan prior to getting septicemia was that Steve, Rebecca and I were going in the morning for the Church Service to mark the opening of this years Poppy Appeal. Now last year we didn’t go in to the service and both Steve and I regretted this. Steve had agreed to being there in the morning but he had to start work at midday so after the service he was going to return home. I didn’t know but I had won an Award and Peter Wakeman had written a beautiful address as part of the service and I’m honored. Rebecca accepted the award on my behalf and I know she would have been proud and sad. Had I of been there I would have cried like a baby. Thank you so much Peter.

Don’t forget that Daisy Den was due today also between 2 – 4.  So he needed to be there for that too. I was secretly hoping to be told that I could be going home today as Friday is kick out day prior the the weekend. As they operate on reduced staffing due to most departments not functioning like they do Monday – Friday with booked appointments etc etc over the weekend in all hospitals.

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Snakey Jakey, Nathan and my new boss Jonathan
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Is it just me or does Leanne look like she is looking for an escape route?
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The BHS Family, so proud of them all :-)
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My favourite photo of Rebecca and Linda :-)
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The platform from which they will launch themselves off!

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All of this was fine apart from the fact that on Monday I was so ill and ended up not being with everyone but stuck in hospital with septicemia.  So the new plan is that throughout the day the photos and updates could come through to me here so I could feel part of the day. Leanne BFF had arranged to get Rebecca to the venue and we had a plan to get her home. This freed up Steve to come to have an hour’s breakfast with me prior to starting work. All plans so far going well and apart from the wrong post code being entered into Sat Nav which made Rebecca worry that she would be late everything else was going to plan. Rebecca was eventually delivered to Guildford Cathedral to join the BHS family members and do the Abseil. I just want to be at home watching Daisy Den going up with Steve and Richard working together on his labour of love for me. I want so much to be at home to be with my best mate, to watch him work with Richard having fun together doing man’s stuff together as I watch on with pride, making cups of tea, cold drinks lunch, looking after my men. So I’m dreaming of all of this secretly behind his back as I don’t want him or I to get too excited and then it all goes wrong. As it has with the Abseil, I wanted to be with them so much to see Linda, Rebecca, Janine and Emma do the Abseil and be there to cheer them on but I’ve already lost hope of that happening so now I just want to be at home watching Steve and Richard.

So Steve leaves me after our hour’s breakfast together where in parts it all went wrong I have spent the night planning to do out the loft so that we have a room with a fantastic view, just for us but I hadn’t told anyone before and I now regret even suggesting converting the loft too, as I can see in his eyes the upset, stress and worry that I have now caused him again, shit shit shit shit and bloody shit why didn’t I just leave it? I repeatedly said to him that the plan had never changed that the works over the next 4 weeks would be a little mad and disruption but for me that then ends and it’s all about calm peace bad planning for Christmas but he just looks at me and looks so sad, I can’t seem to reach him, I don’t think he believes me shit shit shit shit. I did all that work last night thinking he would go, wow what a fantastic idea and all just fell flat between my heavily laboured words as I struggle to talk for more than say 10 minutes.

Steve returns me to the ward and he leaves, I had visions of him driving home excited about phase 2 the final wow factor for in the new year a room with a view that we have always wanted but this mega room, a real wow, that contains a bedroom, bathroom,  kitchen area, disabled shower thing everything we would need all in the loft conversion, but Steve didn’t like the idea and I’ve made him sad.

So Steve returns me to the ward and leaves. The doctor approaches me and says that if he can get the antibiotics into tablet form I can go home today. I’m in floods of tears with gratitude tears flow as I can now see Richard and watch with pride as Steve builds his labour of love for me, my Daisy Den.

Mom is due at midday for lunch. So I am watching the clock as I can’t wait to tell her I’m coming home, I haven’t texted Steve as I don’t want to get his hopes up as they have to get the tablets first, it all hangs on that. The doctor returns to me and says that he has passed it to another doctor as they have a fantastic relationship with the pharmacy lab and he would get the results that we need. So I’m playing the waiting game and I’m dreaming of being back at home with my loved ones and seeing Molly moo again, I miss my home so much.

All the  while this is going on I am thinking of the team, the abseil and how much I wanted to see Rebecca, Linda, Janine and Emma complete this abseil, I have dreams of pulling together videos for them to share with their loved ones and I cry that I can’t be with them for this day had been planned around me being there with them for the full week prior, all based around me being well enough after chemo on the Monday and yet again I had screwed it up, shit shit shit shit. what a fool I have been.

At around 11.30 the doctor came to me, he said that they can’t get the antibiotics into tablet form and that the infection in my blood is so serious that they need to get me straight away to the echo department for an emergency scan on my heart as if the infection is in my heart I will be dead within 3 weeks, there is a team waiting now and I have to go. Forget cancer and chemo this infection is too serious.

Mom is due any minute and so I ask for 10 minutes for my mom to arrive before we go, they agree. Mom is running late but arrives at about 12.10. I say hello and explain that we have to go now to the echo unit and that I will explain everything after the scan on my heart. Calls have been put in for a porter to take me but no one is coming as echo is a long way from where we are and it’s hard to find the ward sister is frantic to get me this porter. Mom must have been thinking what on earth is going on all this mega panic about getting a porter, everyone trying everything to find someone who knows where he is. We start asking around the ward and we find a nurse who knows where echo is, we have a member of staff who has the card to get us through all of the back areas as she knows a short cut through the hospital. So all ready we set off at break neck speed with my poor mom behind us trying to keep up with the speed of the team pushing me for about a good 5 -7 minutes to get to echo without a clue as to the panic and importance of this heart scan cos if it’s around my heart I won’t even be here to launch the calendars shit shit shit shit what a fool I have been.

We arrive and the team are waiting for me, It’s a special ultrasound scan just for the heart, I get on the bed and I’m covered in jelly, I have to just lie flat and still and let her do her stuff. I don’t dare look at the screen. She takes video footage of the heart too, measures it like they do with a baby if this scan is bad I’m dead within weeks and if it’s okay then we have hope again. After about 5 minutes of letting her do what she needs to do and as I have to ask, I explain that I know why I’m having the scan and how important it is. That I know that she can’t tell me as a full report has to be completed and verified etc etc but could she please tell me upon what she has seen so far are there any signs of abcesses around my heart?

She knows that I understand the importance of the emergency scan and how she can’t really comment, and I don’t want to look at the screen but she tells me that as far as she can see there is no signs of any abscesses forming around my heart.

Scan complete I then return to my mom and I have to tell her what the panic was and that it’s okay as the heart at this moment is fine but they have to get the drugs into me four times a day and we have to get back to the ward for a the agreed time. So we all as the emergency echo team have to return to the main hospital but you can go a really really super quick way across the road so we take this route with mom and we are sat at a table with two pieces of cake and a hot chocolate as planned within about 10 minutes. Mom than tells me how much I have upset Steve and how stressed out he was when he returned home hence mom being late I suppose.

Hospital life here is a real mixture and before I explain here are some photos for you

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Porters are fit with 16″ arms wow!
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Prince Ali serving morning coffee, tea and toast
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This is a Royal Marine I met who was scammed and it has left him wheelchair bound for life. He was in a comma for two weeks and nearly lost his life. We talked for about 1/2 hour and he his such a wonderful man.

 

 

 

 

 

 

 

 

 

So there are 6 beds in our bay on Ward 10

The beds are laid out in twos opposite each other. Now to understand my explanation of the people on the ward I have given them names from the classic sit com Faulty Towers and if you haven’t seen this sitcom then I’m sorry and you may not understand my logic.

Right hand Side first

Bed 1 – Mrs Hall     Bed 2 – Raylene Miles       Bed 3 Cybil Fawlty

Left Hand Side

Bed 1 Miss Tibbs     Bed 2 – Mrs Richards         Bed 3 Me

Mrs Richards has questioned my entertainment license cos she is not sure that I am qualified for entertainment. This is whilst I was singing the Dad’s Army theme tune to Miss Tibbs on night. Mrs Richards, when speaking to medical staff always reminds me of the classic lines:

Mrs Richards: “When I pay for a view, I expect something more interesting than that.”
Basil: “But that is Torquay, madam.”
Mrs Richards: “Well it’s not good enough.”
Basil: “Well may I ask what you expected to see out of a Torquay hotel bedroom window? Sydney Opera House perhaps? The Hanging Gardens of Babylon? Herds of wildebeest sweeping majestically across the plain…”
Mrs Richards: “Don’t be silly. I expect to be able to see the sea.”
Basil: “You can see the sea! It’s over there between the land and the sky!”
Mrs Richards: “I’d need a telescope to see that.”
Basil: “Well might I suggest you move to a hotel closer to the sea. Or preferably in it.”

Today – Saturday 24th October

Daisy Den – Steve’s labour of love. Built by Steve, Richard, Toon and Seward

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Daisy Den arrives :-)
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Foundations base down

 

 

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a few hours later
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wow almost there boys

 

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Almost finished

 

 

 

 

 

 

 

Rebecca is having a fun day too shopping with her Aunty Nicky :-))))

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So What’s happening here with my results

Echo results are still not available to read

Blood cultures take up to 5 days to grow and no results as yet.

Blood tests – inflammation markers were at 193 (high) now 27 and in a normal person it’s less than 5. So all the results so far are going in the right direction.

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Talk about save the best for last, well sadly you all have my bum and the Christmas back drop from conference but for me this is my favourite. I wanted it on the front cover but Steve was the final editor so he has the final say.

This is the Big Man himself, Juddy and he now only agreed to do the shot for me he hired all the costumes and had the version of doing the YMCA dance which we did endlessly whilst we worked together at Gatwick Airport. I am so proud of him for doing this as we don’t have perfect bodies and that’s what this Calendar is all about ‘Real People, Real Bodies, Real Cheek!

SO it gives me great pleasure to give to you Mr November, my Juddy.

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Final shot of December I’m sorry but you have me again, Mrs December

 

 

 

 

I don’t know a copy of the back page so I’ll put that up tomorrow for you all.

Come On Peter on Strictly, can’t wait to see you dance tonight :-)

And finally Rita prayers for tomorrow are for Karen, Frankie and all in Ward 10 here out on location and for all loved ones caring for people in hospital as I see the sorrow and sadness just in my little world so to think of that suffering up and down the country is hard to think of. For also all medical staf attending to everyone’s needs.

Latest Bostin Bums on location at Stoke Mandeville

It has been a whole day of tests for me today, whilst my daughter joined my BHS family and abseiled of Guildford Cathedral. Photos and video footage are still flowing in so I am hoping that tomorrow we can celebrate their achievements together.

Back to your daily tease on the calendar:

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This is Karen, which regular readers will know is my chemo bud who I met on Ward 12 at Wycombe Hospital. I understand what a massive ask it was of me and I know that she has only done it to support me. I am proud to give you Mrs September.

 

 

 

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J – the Isle of Wight Secret Biscuit Agent was one of the first to volunteer her bum for the cause. She loves a good laugh and took great pleasure in watching the Isle of Wight bus tours faces as they drove past her house and saw her half naked. I can imagine her smiling as if this was everyday behaviour on the island whilst her husband took the photos. I give you Mrs October.

 

Enjoy your Friday night. The weekend starts here. Full update and the final two bums very soon.

Horror & Hope

From about a week last Friday around the 15th, I noticed a strange lack of ability in my legs, just strange nothing more. A lack of muscle usage maybe and I dismissed it and carried on. It got worse.

Hilary was right in her comments on the blog. I didn’t mention the fact that I was very worried for my Lib Deb family who were hosting this years Lib Dem Regional Conference due to the fantastic prior events ruan by Paula, the team and myself. The leader Tim Farron was also coming and nothing had been brought or planned not a single tomato!

Another excuse to see the cute Dylan
Another excuse to see the cute Dylan

Paula was distraught and rightly so, she has her own health issues and the health issues and worries of her son, Dylan. I couldn’t leave her, I had to help. So we planned the best we could, pulled on some heartstrings, begged and flirted and sorted it out.

Friday at 8 am Steve and I enjoy morning cuddles in the Love Tub. At 9 am Paula arrives with ingredients to make 100 flapjacks. Steve is on hand for mixing as neither Paula nor I can do that heavy work and we churched out about 80 for £10. Now there’s profit margin Lord Sugar!

Cooled and drizzled in milk and dark chocolate we baby-sat them until Saturday morning.

Saturday Rebecca, Steve and I join the kitchen team. We prepped; set up, laid out and customer flow the day within 2 hours flat. Returning home for 11 am to welcome Richard, Louise and then Chris and Bethan. With no-one needing to know the crisis we had saved. All going to plan but as that days post then states it all started to go wrong and wind stopped play.

So I don’t need to re write that but just cut and paste it so that I know have the details behind it. This is just the post entry of Friday night to remain you what happened:

I drift off and now it’s too late for me to join Steve in going to see Chris wrestle and I really wanted to do this but there was no way I was well enough to go, so Steve had to go alone, this upset me as it was something that really wanted to do. Richard returns from his meal with Louise but yet again I’m in so much pain that it’s so hard for everyone to see.

I continue to try to deal with the pain and extreme fatigue; my weekend plans of family fun ruined. Steve wakes me at midnight to take my last drugs. I take them and by now I’ve had enough too and just take 5 ml of oral morphine. I tell Steve to go to bed as he needs his sleep and I remain in my dream machine waiting for the relief of the morphine. This starts to kick in within about 10 minutes and I regret not taking the morphine earlier but morphine slows my bowels down and round and round it all goes, never ending cycle of pain, bloating and swellings.

Once the morphine had kicked in I felt really bad as I hadn’t been on line at all or even looked at my phone. I hate not replying to everyone and thanking you all for sharing. I picked up my phone and started to read through the emails and I just sat and sobbed and sobbed and sobbed. Beautiful words and love, friendship and support come flooding in to my house daily and I consider myself so blessed.

You all say how strong I am and that I am inspirational and I’m just not at all. I’m scared and sad. I hate the thought of not being alive with my loved ones and leaving them. The withdrawal of vital drugs to others behind me in the chemo queue just upsets me so much and whilst I have been lucky by 3 weeks the thought of others not having that treatment available just makes me cry. So I cry and cry and then I have a nose bleed. I’m so sick of feeling ill. I had let everyone down that night by being ill and I just find myself needing to sob.

After I had pulled myself together I decided that I need to see if I can get my bowels moving again so I stay up and do a self enema but whilst it worked it wasn’t impressive.

I decided that I have to try to sleep and go to bed at 2.15 only to wake up at 4 am but at least I slept. So after 11 hours of pain and agony finally my body is under control again. I have been okay so far today and I have managed to catch up with all your comments which mean so much to me and sorry I didn’t reply earlier plus sorry if I woke any of you by replying between 4 – 6 am this morning.

Anyway it’s a full Sunday dinner here courtesy of my mom. It’s been lovely having Richard home for a few hours and I’m excited as he is also coming home next weekend to help Steve build Daisy Den :-).

Whoever sent me the lovely china mug I really appreciate it but it arrived broken and we will try to contact the post office to sort this out but I don’t know who sent it but thank you anyway.

The calendar has got you all super excited which is fantastic and the blog is getting over 1000 hits per day during the slow reveal. Thank you all for supporting me but we have to wait 3 weeks for the print run and then get them out so hold on promoting it until I can get the pre-order form up etc so we can take orders.

And then I fell silent to you all and here’s what only I remember:

We had swapped the dosage of Gabbi on Saturday working with the Ian Rennie nurses ahead of the meeting on Monday and chemo commencing as planned.

Steve was on earlies but had arranged cover for the pain specialist appointment.

I woke at 2.15 after going to bed at midnight as I was too tired to do ‘Wack a Comment’ and I could do them at 3 or 4 am when the world was asleep.

I watched every hour go by waiting for Steve. I knew I was not strong enough to even attempt the stairs so Steve got my clothes.

The minutes ticked round and I was feeling so unwell and dreading even getting to the appointment.

I’d been good and followed the new drug plan as directed.

By some miracle we made it, I don’t remember anything really apart from the appointment was held in ‘Wiggy woman’s’ room. Poor Wiggy woman, did she get kicked out of her room?

So from that appointment we went onto Sunrise where Jan was there, she took one look at me and the others and they were worried.

Jan took me to bay 2 and I cried on her. She said that she thought we should delay chemo, until Wednesday, I instantly said ‘no’ as I needed to go to Guildford on Friday (the chemo bottle has to be disconnected two days after). We were offered 9 am Tuesday; excellent I thought I could still make it on Friday. So Tuesday agreed to and then she said hold on I’d better just check with the pain specialist. Jan returned repeating her request that chemo is delayed by a week and I was to go home and rest. To sleep off the double dosage of gabbi and I should be okay by around 4 pm.

Excellent plan and I’m off home to sleep it off.

So at home at last and I sleep in dream machine with Steve at work. I remember seeing Richard in his Army uniform in our kitchen with Steve but I thought I was dreaming. I remember trying to open my eyes to say hello to Rebecca who had returned from work, but I could have imagined it.

I remember a feeling of the kitchen becoming cold and full of men, strange voices green dressed men, a siren. Quiet panic, Steve talking and a man asking if he can listen to my chest! I’m in a vehicle next, Rebecca is talking what I think is rubbish to the green dressed men.

I hear the work septicemia, shit!

I’m going to hospital, It’s me they are talking about, I look around me I strapped in, where’s Steve? Why has he left Rebecca to do this, where’s mom, mom, mom, mom, and I’m gone again into a blackout. Next thing I know I am in a strange shaped long room, Rebecca is there. A drunken woman flies past on the floor screaming with her man trying to control her, nurses behind him behind her.

Bloody hell, I’m going on or is this Jeremy Kyle??? Rebecca stands and closes the curtain but she can’t stop the sound of the woman crying and screaming which just goes on and on and on.

A man appears; he asks me where I think I am, Stoke, I reply

He when starts to examine me but he asks before he does anything. He even offered to leave the room whilst Steve pulls down my pants. Now I maybe 48 but surely my bits are not that bad? And what if I said no? What would he do then?

What should have taken ½ hour an hour of questions and no fannying about took what seemed like forever and lots of fannying about. Bedside manner has a place. Quick diagnosis is not the place for it, in my opinion.

So fannying about over. I and screaming drunks amongst others am left with a qualified nurses and an almost qualified one. One 4”5 and the other about 5”4’ I am guessing of course but I bet I’m not far off. So now I need a wee of course. The nurse fetches a bed pan and it’s at this point I realise I can’t move anything, I’ve lost all control over my body. Oh no I’m paralysed.

So bedpan there ready all I have to do is lift my myself two inches up and side over onto a commode but I just can’t do it. The nurse just stands there, she says she can’t help as she can’t touch me it invades my personal space. Rebecca at this point is just amazing, she takes control and lifts me but I’m a dead weight and so I flop back onto the bed, exhausted, frustrated, humiliated and paralysed. Get the bedpan. Now this again is a complete waste of time, it’s an inch deep shovel shaped blue thing that is placed underneath me and all I have to do when it’s in place is sit up and wee. Shovel pan in place, Rebecca takes control again and lifts me up. Now I can’t wee! FFS just have a wee, Rebecca suggests after about 10 minutes ‘just wiggle it’ I do and I wee, perfect, wee over I flop back and cover myself in wee! Why I didn’t just piss myself in the first place is beyond me. As I am in the Jeremy Kyle waiting room for about 48 hours this same routine and pathetic pretense to protect my space means that three times I just get covered in wee, mixed with a little poo and Rebecca just deals with it. At one point I look down the bed and she has her head on the bottom of it, I can’t see her face just hair as she is so exhausted she tries to sleep but be with me still.

At some point mom arrives to take over. She has turned the back of her car into a bed for Rebecca and the swap over. I wake up to my mom holding and waving a floppy egg sandwich in my face ‘try this it’s egg’ I snap at her ‘mom I’ve just opened my eyes to you waving egg at me, stop it’ Oh no, now I’ve upset my mom. Eventually not sure what time it was we were told we were moving to ward 10.

Quickly and very efficiently my belongings and we were moved in one go.

As soon as I hit the ward a wonderful nurse got me settled, got the commode, lifted me up and on it within seconds, I cried, she said don’t worry we nurse the old fashioned way. As simple as that, why don’t we just let nurses, nurse, and teachers, teach etc, etc why does every government feel the need to meddle and interfere? Like they want to be the ones who save it. Well the truth is it all just bollocks and if we want an NHS free at the point of contact, with all needs met for you, all advice laid out should you be given a chronic diagnosis. If you want the best then you can have it but you my have to pay an extra 10p in every pound you earn. But would you not do that willingly if you knew every penny went straight to them? You would save more than that a year by saving on charitable donations to Macmillan alone! Where did the £215 million pounds go to last year? Just redirecting that money alone would save our NHS for a year. The nurses should go back under the public sector and every town should have it’s A&E returned to full operational service for the people of that town. We have paid money into the system for a local service, not one 17 miles away like here in High Wycombe. This is what our town was lumbered without by the last Labour government. Who said it’s not possible to run an A&E at Wycombe? Well I say ‘yes it is possible, nothing is unachievable if you decide the outcome is always going to be yes whatever they throw at you.

See now! I’m really mad and if 2/3 of this world don’t have access to running water and a single woman walks miles to collect a jug of water for her children and she walks for miles. Then show me a man who wouldn’t ensure he left a fully functional hospital for his generations to come from birth to death on the doorstep of his chosen town as his gift to his family. I say power to the people of this land. Take the power over your NHS, our NHS away from the politicians who just play political football with it every 4 years and give it back to the people who truly care about your town. If your local MP said ‘no sorry it’s just not possible, then next election, kick him out cos he is not representing you, your family or what you or them need. Sorry but NO is NO longer good enough for me, it never has been. It’s our services and our families’ future, it’s too important to keep getting it so wrong. The power should go to the people you elect at a local level. Okay so I don’t have all the answers but I’m almost there. I just need a ‘tah dah’ moment with Mr Wonderful when I get out of hospital to fully complete my rant!

Okay so I’m on ward 10 with nurses who know how to nurse. I do secret exercises to get strength and power back and slowly over the next 3 days I get better everyday, slowly, very slowly but everyday I’m stronger.

I’ve had a CT scan of my brain, which confirms I have no tumours on my brain. I’ve had another MRI scan to confirm the tumours are not blocking off my spinal cord. The have mapped my infection and I’m on antibiotics tailored to the bug that gave me septicemia. Now I will remain here until they say I can go home. I’m being that good. I want to take the worry away from my loved ones.

So this post will go up an everyday I will continue the two Calendar pages per day theme to make you all smile. If I can post more I will but no pressure as I just need to get well and strong again ready for chemo, as without chemo I have no chance of beating this. I know you will all understand for just a few more days.

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I do apologise, I’m so sorry but I’m your Mrs July. This photo was a private shot taken by Steve on one of our many holidays together. He just loves the natural composition of the shot and as he is the final editor I have no say. So I’m your Mrs July 2016.

 

 

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Now this is far more exciting. As his face is showing and he is in the ‘Cancer Free’ video, you all know and love him. I very very very proud to give to you you Mr August, the one and only ‘Stud Muffin himself, my kids adored Uncle Peter. Photos taken in Australia. complete with hand cuffs and a very saucy, cheeky grin. Your Mr August for 2016.

 

 

 

 

 

Hospital update

I’m almost normal, well as normal as I can be.

I’m so sorry that I made you all worry. It’s been a difficult few days for me and my family.

The focus is now on getting me well and home again but the infection has felt me without feeling and movement in most limbs. I’m working so hard to get this back as I can’t cope not being to move, hold a cup, go to the loo myself etc etc

I will update the blog when I can. Please for the next few days just give my loved ones some space as they are trying to balance work, me, worry and hospital visits.

I’m over the worst of the infection now so it’s just all about recovery.

One final big demand is no flowers, When I get out of here if there is one flower in my house, they will say who they are from and I will hunt you down!!!!  If you want flowers buy them for you, not me, oh and no presents either – okay – deal

Good I’m glad we got that sorted out then. Your love and support everyday via comments and messages is all I need however it may take a while to get round to answering you all but I will, you know I will.

 

Wind stops play!

I was so excited for this weekend to come around. Richard was coming home and I haven’t spoken to him for 3 weeks, well not face to face and I miss him so much. Mom was returning just for the weekend as she went home for a break and Steve with the help of Mr Big has been working hard to erect the new units in my mom’s room so I wanted her to come down and see what Steve had done for her. She now has a lovely room with a wardrobe to hang her clothes and a lovely chair. I just really wanted to do this for my mom who deserves it so much. Mom arrives first and she loves her room. She has brought gifts for it and turned up the curtains whilst at home. She is now excited about putting art on the walls and making it her own space.

Chris and Bethan arrive and it’s lovely to see them again and Steve as we planned takes them into town for their time together whilst I remain her with Richard and Louise, quiet time just to get Richard up to speed on the stuff we are doing and for him to just be home.  Chris is a wrestler and Saturday evening he was in a local show which Steve and I were looking forward to going and seeing.

Just family time together was the plan for this weekend, no stress just to be together, well that was the plan but like all things in life plans don’t always work as you want them to and so to explain I have to go back to the meeting on Friday with Dr Weaver.

So chemo and my ability to deal with it whilst unpleasant is going well. I’m on maximum dose and we keep going plus the extra drugs via the funding after the 1/2 way scan at mid November. The problem is that my bowels are on close down here and we have to get this sorted out. I have a prescription for Monday to collect as the laxatives I’m taking are just not strong enough. The lack of taste means I can’t finish a meal and I’ve been living on sweet things, not good hey? At each appointment you are weighed and I am back to 61kg which is where I was the first time I was weighed following the removal of the 1/3 of my bowel. So I’m losing weight which I don’t want to do but my stomach is constantly swollen and nothing moves.

Steve and I discuss solutions and I started Saturday morning with yoghurt and fruits, so I have eaten prunes, raspberries and peaches for breakfast and I can taste them. The plan is to eat roughage and try to get protein into me and not just ice cream.

The day was going well, the plan was working. Everyone was left feel to do what they wanted for their evening meal and after ours the plan was for Steve and I to go and see Chris wrestle at the local show.

At about 4 pm Richard, Louise and I hit the ‘Love Tub.’ Now normally I do about 20 minutes and then I come out. Not today as we were just enjoying chilling together I was in there for about 40 minutes. Once out as normal the pain returns but that’s okay as I’m used to that.

Being in the water makes me hungry and I start eating as I feel week and shaky. I eat more fruit and ice cream, plus biscuits and drink a lovely hot chocolate. Still unsteady on my feet I ask Steve to come with me to dress me in case I fall on the stairs, I just feel so weak. Dressed and happy I return downstairs and the takeaway mom ordered of Chinese arrives. I do manage to eat some of it but not a lot. So Tiramisu for pudding. yum that just slips down. The plan is going well as I have had protein too.

And then the pain started, the lack of bowel movement means I blow up, this puts pressure on the tumors in my spine, I can’t burp or fart and I’m swelling up. Most people could walk it off but I can’t walk, I’m up and down, I can’t release anything, hours go by and no release. I am then hit with fatigue and I’m just a bloody mess. The trouble is that if I’m okay the whole house is okay and everyone is happy but if I’m suffering in pain and no one can help me it’s just soul destroying for them all. They try to act normal, offer things to help, try normal conversation but this is so hard for them all.

I drift off and now it’s too late for me to join Steve in going to see Chris wrestle and I really wanted to do this but there was no way I was well enough to go, so Steve had to go alone, this upset me as it was something that really wanted to do. Richard returns from his meal with Louise but yet again I’m in so much pain that it’s so hard for everyone to see.

I continue to try to deal with the pain and extreme fatigue, my weekend plans of family fun ruined. Steve wakes me at midnight to take my last drugs. I take them and by now I’ve had enough too and just take 5 ml of oral morphine. I tell Steve to go to bed as he needs his sleep and I remain in my dream machine waiting for the relief of the morphine. This starts to kick in within about 10 minutes and I regret not taking the morphine earlier but morphine slows my bowels down and round and round it all goes, never ending cycle of pain, bloating and swellings.

Once the morphine had kicked in I felt really bad as I hadn’t been on line at all or even looked at my phone. I hate not replying to everyone and thanking you all for sharing. I picked up my phone and started to read through the emails and I just sat and sobbed and sobbed and sobbed. Beautiful words and love, friendship and support come flooding in to my house daily and I consider myself so blessed.

You all say how strong I am and that I am inspirational and I’m just not at all. I’m scared and sad. I hate the thought of not being alive with my loved ones and leaving them. The withdrawal of vital drugs to others behind me in the chemo queue just upsets me so much and whilst I have been lucky by 3 weeks the thought of others not having that treatment available just makes me cry. So I cry and cry and then I have a nose bleed. I’m so sick of feeling ill. I had let everyone down that night by being ill and I just find myself needing to sob.

After I had pulled myself together I decided that I need to see if I can get my bowels moving again so I stay up and do a self enema but whilst it worked it wasn’t impressive.

I decided that I have to try to sleep and go to bed at  2.15 only to wake up at 4 am but at least I slept. So after 11 hours of pain and agony finally my body is under control again. I have been okay so far today and I have managed to catch up with all your comments which mean so much to me and sorry I didn’t reply earlier plus sorry if I woke any of you by replying between 4 – 6 am this morning.

Anyway it’s a full Sunday dinner here courstey of my mom. It’s been lovely having Richard home for a few hours and I’m excited as he is also coming home next weekend to help Steve build Daisy Den :-).

Whoever sent me the lovely china mug I really appreciate it but it arrived broken and we will try to contact the post office to sort this out but I don’t know who sent it but thank you anyway.

The calendar has got you all super excited which is fantastic and the blog is getting over 1000 hits per day during the slow reveal. Thank you all for supporting me but we have to wait 3 weeks for the print run and then get them out so hold on promoting it until I can get the pre-order form up etc so we can take orders.

Now it’s happening a few times that through you lot sharing my blog that people get into it and start reading it daily without actually realising that you know me or my family. This happened to Nita who contacted me to say how much she enjoyed my ramblings. We soon discovered that she knew me and was great friends with Julie my sister and I know that my mom had photos of us as children. The first is of me and Nita brushing our teeth in a stream on a Woodcraft holiday in Lockerbrook and the second is of Nita, Julie and Tracy Skinner. See Nita I said my mom had these photos and it’s lovely that I can share them with you. Sorry they are a bit grainy.

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I hope that you all have had a lovely Sunday and had picking daisy moments with your loved ones.

And finally thank you Rita for your weekly prayers and as usual Rita always sends me the proof of burning down the church, God bless her.

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‘Bostin Bums’ big reveal for today is………….

Screen Shot 2015-10-18 at 14.53.35I’m so proud of my school friend who produced this fantastic shot for us to use in the calendar. She offered to do it and we were just amazed at the effort they went to. She is featured with her daughter and friend. They have gone to the trouble of all wearing making hats, and holding swords. Absolutley fantastic and I’m proud to introduce to you the 3 Musketeers as your Miss Mays

 

 

Screen Shot 2015-10-18 at 14.53.45So here is a double bum shot taken in the local open air swimming pool. Now the angle we were going for here was the fact that I don’t want to swim with Dolpins before I die. It’s not on my ‘bucket list’ So a very dear friend joined Steve and so I’m proud to announce Ms June.

 

 

 

I’m WILD!

Now don’t all panic at that title as I will explain it all to you but you will be both pleased and then I hope as angry and mad as I am when it comes to that part.

So behind the sceens what has been happening to me, well sadly as it’s ‘warts and all’ my bowels have just stopped working, I can’t taste food and I have just been coping on food that I can taste like lemon tart and ice cream, funny how I can taste ice cream. It’s not actually the taste but following the awful mouth thrush to have smooth cold food going down is lovely so lovely. Mushroom soup is okay but my diet lacks protein, roughage etc. So my stomach starts to bloat and the pressure on the tumours gets worse and then the pain starts and round and round we go. I take laxatives throughout the day but nothing, not even wind. So on  Friday night I tell Steve to go to bed and that I will have to do another self help enema, oh the joy of life hey, the glamour of bowel cancer. So that all done and there was nothing to shout about I can tell you, only one flush needed is all I’m saying. I go back to my dream machine as I hope that maybe there is more to come. I drifted off to slept in the chair and wake at 3.15.

Oh no I forgot to take my last tablets and now I don’t know what to do. So I decide it’s too  late to take them. From 3.15 until Steve wakes at 8 am I had another night from hell. I took oral morphine, nothing took the pain away, an hour later and I take more hoping for sleep and pain relief but only a slight relief comes from that. I sit and cry alone in my chair in so much pain. I know what I need the answer is outside the back door but I can’t risk going in my tub. I can’t get the PICC line protector on without Steve to help me. If I fell or anything as I’m bent double in pain Steve would kill me and so I just have to sit and wait, I watch the kitchen clock tick by slowly, I sit alone crying and just waiting for someone to wake up. As soon as Steve is awake and had his first coffee I ask him the get the cover on and I’m straight in the hot tub, release from pain at last and I enjoy 20 minutes of pain relief without any drugs, that’s how much my hot tub means to me. Now it’s worth at this point to thank you all for your suggestions on a name for the hot tub has been decided and it was suggested from my very dear friend Tammy who came up with ‘Love Tub’ just perfect as it will bring me and my loved ones closers, I can lie in the water and cuddle with Steve which as you all know is impossible out of the water, so thank you all so much for your suggestions but ‘Love Tub’ it is.

Now the other day I had a bit of a wobble as I was worried what people would think about all the publicity I am entering into and, going to Parliament in January, having a hot tub and some money to spend due to cashing in my pension and I then had this wonderful message and I read it and cried as it really touched me so here is what I was sent:

OMG Wendy there must be hundreds (maybe thousands) of people whooping, clapping, smiling, tearing up seeing the arrival of the bubbly wubbly – and who decided on the Space Odyssey theme tune? It was a stroke of genius. What an absolute crowd pleaser.

I don’t believe for one second that anyone who reads your blog would think you are flash. I think we are all whooping and hollering together because we’ve all been looking forward to seeing the lovely things arriving.

I have a theory that your mum didn’t want to go home because she wanted to be first in the hot tub! 😉 and
I was half expecting to log in tonight to see you, Steve, Rebecca, the delivery men, Molly, Tia the ungrateful cat, a representative from BHS and the squirrel in there.

Your Dr Who interaction sounds like a morphine dream. In morphine dreams there’s no anxiety about turning up at work naked. You just think, “Oh! I’m naked! Well isn’t everybody else in the office lucky?” ha ha.

I’ve had a bad experience with Dr Who. The dullest party I ever went to was at a girl called Claire’s house (whose family was very ‘eccentric’ and ever so ever so. All I remember about it was having to sit in the lounge and endure Dr Who for what seemed like FOREVER. I thought it was never going to end.

Your blog is a triumph mrs. You are definitely achieving your objective of raising awareness. You know you were dead excited when Peter Andre retweeted?, well I felt the same when you replied to my very first comment. I think the interaction you have with everyone is the secret to it’s success. Your blog is a virtual version of a friend opening their front door with a big smile on their face and saying come on in, I’m just putting the kettle on.

I am so pleased you had a cuddle with your Mr Wonderful. You’re my favourite couple ever x

How lovely is that?

Okay so do you remember the post the other day where I woke in a drug like state and I thought I was with Dr Who and we were off fighting cancer together in the Tardis? Well it’s happened again but this time it’s so much more embarrassing but ‘warts and all’ here we go.

So I woke this morning and I can’t find my dressing gown so I put on Steve’s lumber like jacket, I go to go for a wee and I remember that Fern Britton has told me that I must do a wee test so I grab a glass from the kitchen and sit on the stairs to do a wee test but the glass is to small so I open the front door throw the wee in the bush and then start again weeing on the stairs. Job done I can’t find the coffee machine so I get a hot chocolate (the two machines are next to each other), go to my dream machine and have a fag. I’m sitting quiet and reality starts to wash over me. OMG I thought I’m dressed in Steve’s lumber style jacket drinking a hot chocolate! Oh no I thought, if I go round the corner of the kitchen and there is a glass of wee on the side it’s not a dream. So I stand and walk around the corner and there it is on the side, the glass of wee. Now I’m scared as I didn’t have any control or knowledge of what I was doing, I thought that it was a dream. Rebecca wakes up and asks why the stairs are wet. So I told her and she laughed, I told Steve and he laughed too as did my mom however I’m worried. What if I dream something dangerous and hurt someone? I have no control over these dreams/sleep walking at all. So not my normal routine at all as I’m sure you will all agree!

So now for the Wild bit of the post. Yesterday I was at the hospital all afternoon due to blood tests ahead of chemo on Monday and a 4 pm appointment with Dr Weaver as a general ‘how are you doing’ chat. We have as we thought the good news that from the MRI scan the cancer has not gone into my bones. The KRASS test has been returned and I have the ‘Wild’ type which means that it is hereditary and it wouldn’t have matter if I’d have eaten healthy all my life or lived off junk food i was born with it. This is excellent news as I can now be put forward to go onto a drug called Cetuximab which when given with the chemo I’m on can give me an extra 30% more time, wow. Dr Weaver fills out the request form for funding. He then tells us that the funding for this drug is being withdrawn from the 4th November this year and so by a matter of weeks I will have just made it. I can’t believe this, why would the Government pull the funding for a drug that works??? So I ask Dr Weaver what about the people behind me in the queue of treatment, what have you got to give them? And his reply was ‘Nothing’! Now I’m really wild, mad, anger, sad and since that conversation I have cried for all the people that will potentially miss out on maybe an extra year with their loved ones due to Government cuts in cancer treatment. Wasn’t it less than a month since the Government did this big announcement about wanting to become world leaders in identifying cancer? Yes it did but what it didn’t say is that if you have got it, they have pulled up the ladder and treatment will not be available that works! Now I’m wild wild wild and when I go to Parliament in January they had better be ready for me cos I am disgusted with this Government and the decisions they are making that effects ‘joe public’ just to save money.

Okay rant over and now for the update on ‘Bostin Bums’ and who is next in the calendar. Oh and thank you all for your messages about the ‘Big Reveal’ yesterday, the outpouring of praise for my Mr Wonderful and the respect you all have given, and rightly so to my BHS Family for the massive support they have and are giving to me.

Screen Shot 2015-10-17 at 18.00.15 Wow that looks just like my front room! and it also looks very much like my daughters bottom! It’s March and cold winter nights so most kids would be playing on the game consoles so that was what we were aiming for here. A massive thank you to Rebecca your ‘Miss March’ who did this to support us.

 

 

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Well that looks like my garden and my Mr Wonderful who said that if we were asking others it’s only fair that he does a shot. So I’m proud to annouce your ‘Mr April’ hence the April showers.

 

 

 

Two more to follow again tomorrow. Now it’s Strickly Come Dancing tonight so come on Peter, lets see you back on top of that leader board please!

And finally for my prayer list for tomorrow Rita is for Karen, Frankie and my loved ones as normal. For all the people who support anyone going through long term illness.

Family time here this weekend with Richard and Louise home plus Chris came down to see his Dad with his girlfriend Bethan. So catch you all tomorrow.

 

 

The Big Reveal

Now what you all don’t know is that I approached BHS to ask them if they would consider a small sponsorship towards the production of the Calendar. Without sponsorship the actually cost price would have had to have been absorbed into the cost by anyone who purchased one. We sent in a business case of options and I was totally overwhelmed when they said that they would fund the entire print run. Not only that but they invited me to select 10 Stores in which to exclusively sell the calendar. I just couldn’t believe that they would be willing to support us to that level. I have cried many times during the last few weeks and this generosity at times has touched me and Steve so deeply that sometimes words are just never enough. To my BHS Family at Head Office who has assisted to make our dreams come true, you are our Heroes, and we can’t thank you enough.

So all of the Calendars on every page will proudly present the new BHS logo with the words ‘Exclusively sponsored by’ Now at this point it’s worth mentioning to you all that this is the first and only print run of 2000 Calendars, there will not be another print run and if you don’t buy one then the opportunity will be lost forever.

 

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So where can you buy a ‘Bostin Bums’ Calendar in BHS I hear you all saying? Well that’s the next surprise as the list of stores which will follow don’t even know that that have been selected. SURPRISE! The following stores will receive an initial allocation and then the race is on to sell through. These stores have been chosen as I believe that they will be 100% supportive of me and BHS to proudly sell them, and they are……….. drum roll………….

  1. Kingston x100
  2. Staines x 100
  3. Bromley x 100
  4. Harrow x 100
  5. High Wycombe x 50
  6. Chichester x 100
  7. Isle of Wight x 50
  8. Woking x 50
  9. Uxbridge x 100
  10. Hanley x 100

So can you order one through the blog? – Yes you can and we will be placing a pre-order form link so that we will dispatch your Calendar to you from our home.

When will they become available? The lead time for printing is 3 weeks so you have time to consider how many you require prior to Christmas, a great Christmas stocking filler for anyone I think.

What will the Postage & Packing cost? unfortunately if you can’t get to one of the listed stores we will have to post them to you however no extra money will be made and the prices are the actually quoted price by the post office plus card mailing envelope, which is:

UK £1.70, Europe: £4.20 and Rest of World £5.50. This cost if ordering online via the blog will be added to the total price at check out.

Now I bet you all want to see the whole calendar don’t you? Well we are not going to let you, instead we have decided to show you two months at a time to tease you all and therefore every day at the end of my post two will be released, well we have 3 weeks to wait anyway so lets get the excitement going on the blog everyday until all of the calendar has been finally revealed. So here is the front cover for you.

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This is a family friend who arrived at our house at 7 am on a Sunday morning to go to our local park to take the shot. She is a keen artist and when told about the Calendar was only to happy to volunteer to help us. We are extremely proud of her and she is your Miss January 2016

 

 

Screen Shot 2015-10-16 at 18.37.26This gentleman was enjoying a holiday with my mom when she approached the idea with the group of them doing a ‘bums out shot’ silence fell! however he thought about the cause and why we were doing the calendar and decided to be brave. Whilst out one day and the coast was clear he bravely ‘bared all’ and just in time by what I’ve been told by my mom. Our friendship with him has been over a massive 34 years and I am so proud to announce him your Mr Febuary

 

So there are your first two teasers for today and I’m sure you will agree that they both are amazing, natural shots. Real People, Real Bodies, Real Cheek!

What’s the size of the prize? – Due to the massive investment by BHS the charity if every one of the 2000 calendars are sold we will have raised a massive

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This was Steve’s project from the beginning. He has had to continue to do his day job, research into printing companies, he has done all the groundwork. He helped shoot some of the shots etc etc I could go on and on with how much work he has put into it but you all know how much I adore my Mr Wonderful so I won’t bore you. He has been the final editor and some photos sadly didn’t make it into the final version and although we debated who went in or out it was only right that he had the final editing rights. Thank you Steve for making this all possible.

Final note of thanks from both Steve and I are to the printing company, Whitehall Printing. They have been so supportive of Steve, assisted with improving the overall product and a special thanks from Steve to Adam & Joe Bendon and Connor O’Neil.

So tomorrow it’s back to normal with my posts but with an extra edition of March & April, as if you submitted a photo, it could be YOU.

Thank you so much BHS for making our dreams come true.

 

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Too Many Tears of Joy

So I didn’t get to use the Hot Tub last night as it was only 33 degrees at 11 pm so we decided to just wait until the morning. Steve is on the early shift so he goes to bed about midnight and I stay up to play my favourite game ‘wack a comment’. I finish this just after 1 am and I’m so tired that I think I can sleep and I have hopes of sleep like the night before of at least 4 hours. So tired I get into bed and the pain of lying on my back is awful, I consider taking oral morphine for release but I lie and try to cope with the pain. I toss and turn but no relief comes however somehow I drift off. I wake at 3.15 am! Omg now I’m upset as my hopes of sleep and rest are shattered and I have had less than 2 hours sleep again. I do my usual routine of coffee, 1/2 biscuit and a fag, no animals in sight and I wonder what to do as I am awake and in pain but I can’t take painkillers through the night unless it’s oral morphine and that affects my bowels and they have stopped working again so I have to wait it out.

I decide that with no project work to do that I will organise my emails and then get on with my to do list from the previous day that I always prepare so that I’m organised. I start with my emails and hit delete until I came across one that I had missed from Gemma, she is from the Ian Rennie charity and she visited me a few weeks ago to discuss publicity. I told her, as I tell everyone that anything I can do to educate people to bring awareness and prevent this happening to anyone else is worth everything to me and that I’d be up to do anything for them.

This is her email:

Hi Wendy
Sorry I’ve been out of touch. I’ve been keeping up-to-date on your blog and have made a start on your case study. In the meantime, the Bucks Free Press would like to interview you as part of a 30 Years of Care feature on Rennie Grove. They’re speaking to our Chairman about the challenges facing palliative care; to our CEO or Nursing Director about how we plan to meet those challenges; to Marina about her work as a Rennie Grove nurse – and then to you about your experience of our care (if that is OK!)? Marina said she saw you yesterday and mentioned it to you and that you were up for it!

So I really just wanted to fill you in a bit more and to confirm that I’ll pass your phone number onto the reporter, Will Burton.

Also, do you remember we talked briefly about a production company, Chalkboard, I think they were called, who are keen to film patients with a prognosis of 6 to 12 months for a documentary called ‘My Wonderful Life’? You said you’d be happy to chat to them too with a view to filming. Is it still OK to pass your number onto them as well? They would call to talk through the project so you could see if it was something you wanted to do.​

Thank you very much and I’ll be back in touch soon with a draft of your case study for you to check :)

Gemma x

Wow and wow I thought, how fantastic is this, an opportunity to reach out to people. I reply yes to everything and I’m now really excited as I can use this platform to promote the Calendar too. I quickly send other emails (all will be revealed about the Calendar in tomorrows post, I promise) and I’m so pleased that it’s all coming together.

I stop for a coffee and another fag. I then have another wave of tiredness and reclining all the way back in my dream machine chair a decide to see if I can rest my eyes. The next thing I know is the kitchen is alive with Rebecca and Steve who are trying to not wake me up. Now like the other morning I wake in a confused state ‘what happened’ I say ‘Where am I?’ The sleep I had drifted into was so deep that I am not really conscious and I’m talking rubbish. I ask Rebecca if she has seen Dr Who as we are fighting cancer together, that I was with the Daleks and Peter Capaldi is waiting for me and I’m not even a Dr Who fan! She said that she had seen an Ood. Steve who is only on his first cup of coffee is confused at my confusion of where I am. I continue to be dazed and struggle between dream and reality. What’s happening to me, is it all the drugs I take? Am I going mad? I eventually come back to normal after a coffee and a fag but it just all felt so real and I now feel really stupid.

So I start my drugs off for the day and wait for Steve to become awake before I tell him about my email and how excited I was about it all. This then led to about an hour of my crying and crying and let me explain why.

I started my blog to try to help others, I didn’t think for one moment that anyone would be interested at all, we are now in 3 months over 73,000 hits all over the world. I have been invited to Parliament, we made the Cancer Free video, I’ve produced a book, we are campaigning for equal screening, we have written 50 Shades of chemo and raised way beyond my dreams of £1000 for Beating Bowel Cancer and we are soon to be selling a Calendar with mine and my friends bottoms on it across England and the world. I have cashed in my Pension and brought a Hot Tub and a Daisy Den and I’m trying to adapt our home so that we can cope with me being here until ‘end of days come’. Now to some who read my blog may think ‘flash cow’ or other such things, I don’t know what people think but the cost of all of this is that it’s costing me my life. I never dreamt I’d have money spare to buy a Hot Tub or a Daisy Den. I’m not flash with cash as like everyone else up and down the country you just have to manage with what spare money you have. I can’t believe that my poor mom has visited us for 14 years here and she has never had a wardrobe. Hence my need to spend my last bit of savings on making her happy prior to the Pension money coming through.

So there is a parallel journey here, one of excitement, project work, publicity etc and the pain of the underlying fact that I could not even be here this time next year. Have I just created a world of my things in our house that will just bring sadness when I’m gone? I don’t want to die, I’m not ready to leave my loved ones. I want to live and go back to normal. I want to be able to cuddle my husband, walk down to the shops and I sob and sob to Steve as I don’t want anyone to think that it’s all about me cos it never has been that for me, I just want to stop this happening to any other family. I want to save everyone from the pain of cancer and the endless sadness it brings.

I eventually stop crying and we decide to hit the Hot Tub to cheer me up. As soon as I’m in the water it’s instant relief. No pain, weightless and free. There is no drug in any of my cupboards that can give me that. Steve joins me and for the first time in weeks, months I can lie with him, him holding me without hurting me at all. We had 20 minutes of pure joy, fun and laughter playing with the controls etc and just being us, a normal happy couple in love and picking daisies.

Now we have prepared a little video for you all to enjoy of the Hot tub arrival and my first steps into her. Which reminds me that you all need to help me again as she needs a name, so thinking caps on you lovely lot.

I hope that you enjoyed the video and tomorrows post will be the long awaited  massive reveal on the ‘Bustin Bums Calendar’. Who’s in it and all the info needed to get your hands on one.

What a mad 24 hrs

Okay so I left you all yesterday as I was cooking for BFF Leanne and the wonderful Andrei to arrive for tea. I’m super excited to have them here in our home. I agree to pace myself with the meal so that I can cope with the cooking. I cook the curry then rest, I cook the rice and then rest and finally I am trying to make home made Peshwari naan breads which I do but as it’s new to me it takes a little longer than planned and so I’m still cooking, flour everywhere and they arrive. I don’t care that I’m not ready and they didn’t either. Greeting done the evening flew by and the conversation flowed beautifully like we had only seen each other recently however sadly it had been 6 years, that took us both by suprise. Old memories of BHS work conference parties and laughter filled our house as we relived precious memories, my meaning of life, sharing precious moments with people I love.

IMG_4827Rebecca was at her weekly maths class and Steve had to go and collect her. Just as he was leaving he asked Andrei if he could be cheeky and asked him if he would help him to carry Mom’s wardrobe door from the garage to the bedroom to help him fit the door. Now I didn’t know he was going to ask him however I could see his logic as after the weekend trauma between two men the job would take less then 15 minutes but with just me for help it would have been maybe hours of struggling and frustration. Andrei agreed and when Steve returned they set to work.

IMG_4830Andrei said that his mom would be proud and so I took photos of them and the fun they had.

 

 

 

 

 

BFF helping
BFF helping

 

IMG_4836Andrei was followed by BFF who got involved in a leg screwing competition against Andrei but Andrei won. Again fun and laughter throughout my house.

 

 

 

 

IMG_4826 (1)On the serious side of cancer the conversation flowed. Andrei was genuinely surprised and shocked at our story, the NHS shortfalls (not their fault) the charities replacing the NHS service and as I am the same age as his mom he worries more, probably just can’t even contemplate being in my children’s or hubby’s shoes. I wants to help, I can see the empathy and caring in his eyes. After food and DIY we all enjoy pudding with ice cream which Andrei had supplied.

A beautiful evening spent with wonderful people, I cried too much throughout the evening but I am always just so touched by how lucky and blessed I am by the people I know. All too soon the evening was over however Andrei is jealous of the psuedonyms in the blog and wants his own. Now Andrei is super sexy and a Bond Man style operator so we have decided to call him Mr Big after the Bond Film ‘Live and Let Die’ however Andrei thinks it’s his size 11 shoe size that has got him that name lol, lets hope that his mom doesn’t read today’s post hey.

So everyone asleep and I’m on my own playing my favourite game of ‘whack a comment’ it gets to 1.20 am and I thought I’ll just check my bank account to see if the money has gone in as with the Hot Tub coming I’m worried about paying for everything. I check and it’s there, I’m so excited. I quickly pay mom back the money she lent me for daisy den and a few more payments I owed and than I’m not stressed. I stay up until 2.20 am excited about tomorrow and wonder if I will ever be able to sleep. As I lay down the pain started but I didn’t want to take oral morphine and hope that I can sleep through it. I couldn’t believe it when I woke up and it was 6 am, OMG I slept for nearly 4 hours, wonderful.

Steve wakes and we plan our day of madness. Steve has to start work at 12 so breakfast done we set about the morning jobs. The crane arrives at 9 am and Eric sits in his crane waiting for the team to arrive. He comes in for toilet breaks and coffee occasionally. The electrician arrives to fit the new outdoor wiring, the internet man arrives to switch over the broadband connection and our house becomes a sea of madness as the pool arrives too. The street is awash with vehicles, crane and workmen, our poor neighbours.

I recieve a parcelled gift from the Juddies, so thoughtful, thank you. Then in the afternoon I recieved a beautiful gift from Louise, it’s a love sphere and inside was a beautiful necklace with a pendant ball of daisies on it. Now how spoiled am I today? Blessed beyond belief and I cried on and off for 3 hours as these people all came together to make my dreams come true. Thank you all.

I also had a call from the wonderful Marina from Ian Rennie this moring. She has organised for me to see a top pain specialist on Monday at Wycombe Hospital to get my medication under control working with the Oncologist team to help me. This is a charity! How amazing is all that? Marina you are a star and thank you so so much.

So the hot tub is in and heating up. I am completely knackered and going to try to shut my eyes for an hour as it’s been so mad here. I can’t wait to get into the hot tub but the temperature is only at 22 degrees and so it maybe tomorrow before I can use it but I just can’t wait. So I’ll sign off as I am tired but so happy and what a mad 24 hours we have had.

Here are a selection of photo’s from our mad day.

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And finally, Daisy Den has a delivery date confirmed for Friday, 23rd October, and film of the crane will be coming soon.

 

 

Life’s Stages

So morning all however although yes you guessed it I woke at 4.30 am as usual and it’s now 5.30 am for me, you may be reading this tonight after your long day at work or on the way back from work or if you’re naughty reading at work whilst pretending to work on some important document that’s urgent, good idea hey.  Anyway this morning the normal routine arrives in the form of the Tia for breakfast and usually Molly briefly looked at me in the kitchen performing my teeth brushing, cat feeding, coffee, 1/2 biscuit followed by a fag and decided to just return to bed. I’ve taken the first of my tablets which is a 3 hour ritual before I can eat, well apart from a bit of biscuit after each tablet as a reward, that surely doesn’t count? Biscuits shouldn’t count toward any calorie intake for the day for anyone.

So when I woke this morning and it was 4.30 I was 1/2 awake and 1/2 dreaming stumbling through the routine. I thought that I had cracked it all, a eureka moment and this was my dream: I wake at 4.30 not because of pain but because a neighbour wakes for an early shift every morning at that time and wakes me up. I don’t have cancer as it was wind all along and they operated on me by mistake. The pain I feel now is due to all the drugs they give me. At the next Oncologist meeting on Friday they will tell me that they got it wrong, my notes were mixed up with someone else’s, that they are very sorry, stop all treatment and crack on with life oh and you can return to work  one month from now just in time for Christmas and the drugs to be out of your system, claim forms for malpractice are on the table top on your way out. Now that’s what my dream state was tellling me, I liked it, loved it and thoughts of me skipping whooping running out of the hospital filled my mind. Reality then set in on around the second coffee and fag that it was just a dream just a mad mixed up dream but the ending of being cancer free and being able to live without a death sentance of a year hanging over my head was just too sweet not to play out in my fantasy mind.

Yesterday my day was just spent with my mom. I loved it and she loved it, the sun was shining and like all relationships we know each other so well, we love to plan, to get excited, to improve things to make things in our house just lovely for other loved ones. Now the fustration of illness and my ability to contribute to anything is so limited it upsets me too much. My mom gets breathless trying to complete daily chores, her hands starting to go club like in appearance as so happens with age. She worries about falling, driving and confidence falls away with each year. She loves being part of our lives and due to the ‘Judy Den’ bedroom make over she has stopped an extra night. She wants to extend this to help finish the room off but I have to say no to her as life has to have balance and everyone needs a break from me, a rest, a recharge of the batteries but she just wants to be with us however she does know we are right. She can return on Monday rested and ready for taking up her invaluable role in this shit journey we are on. Thank you all so much for your comments left for her on the blog as she does read them all and loves them.

Steve had his break from me yesterday by going into the office. He tells Liz that he is glad of the break, there is no shame in saying that as it’s true. Thank you Liz, Graham, Bryn, John and Jay as you all help so much in your support of Steve and he returned yesterday whilst tired but refreshed as we had little contact all day.

So the planned carpet fitting for ‘Judy Den’ happened at bloody 6.50 pm so we waited all day for this and I’m just glad it’s done. Excitement to see the new carpet I crawl upstairs to see. Sat on a stool in the room we start to plan tomorrows job list. I’ve been in pain again since the John Lewis trip out and Steve starts to get stressed at me for planning too much for tomorrow and orders me back downstairs to rest. I sit and cry with him when he joins me of my fustration of being a useless cripple around the house, that I’m sat downstairs whilst everyone is part of the making of Judy Den and I can’t help, lift anything, move anything, just useless. Mom joins us and they understand but still insist that I have to take the day slowly and rest and not do too much as it’s them that have to see me try to recover, in pain and upset. So I agree to behave today and take things easy.

Now when I got the letter to say I could have my M&S pension it made me very happy but also very sad. My doctor has confirmed that I have a shit prognosis of a year. It doesn’t matter whether you only have £2.50 in your bank balance or £2.5 million as no money, no fame, no title you hold, no allegiance to God will save you from dying. It will happen to us all but to be told it’s happening it is very different. I cry because I can spend it on the ones I love whilst I’m alive, happy picking daisies before the sand timer of my life slowly (I hope) runs through the timer like the ones in any game.

So today’s post being stages we need to talk about that and it’s the serious stuff that I alluded to following Nicky’s weekend visit. It started there but applies to all my loved ones and to us all as we all go through grief. Now the internet says that there are 5 stages of grief and they are:

The five stages, denial, anger, bargaining, depression and acceptance are a part of the framework that makes up our learning to live with the one we lost. They are tools to help us frame and identify what we may be feeling. But they are not stops on some linear timeline in grief.

Now you can be in any of those stages at anytime, it’s a roller coaster ride. Now Nicky is in anger mode when she is not with me, when like my mom she reads about my day and feels helpless. She can’t imagine her life without me in it. She reads the blog and comments, lovely words from you all and feels that she isn’t doing enough, not saying enough, not buying me enough thoughtful gifts, not expressing how she feels. So she gets anger. Normal stuff according to the internet, oh where would we be without it hey. I try to explain that it’s okay that she doesn’t text or that she doesn’t find the right words to say cos we have been friends for so long I know how much we love each other, she is considered family to me and has been for over 30 years. It’s the one precious thing of life, your life and it’s experiences shared with others. That’s my meaning of life. If your dream is to swim with a dolphin, great but done alone with no one to share the moment is lost and empty. That’s why I don’t want to swim with a dolphin or climb a mountain or run a Marathon cos I’m happy just sharing moments with my loved ones. Laughter when looking back on the old photos I shared yesterday brought back the ‘ Oh wow remember this day’ and you relive that time and place with each other and feel the memory, feel the laughter, feel the love and it’s that which will hold my loved ones together when I’m gone I hope, the good times, the happy precious moments shared. The love of life and living not being bitter, angry or a victim of cancer but strength from the love we all had for each other.

Getting too heavy for you all I think and wow 6.30 am, so I’ll just go for my next tablet, coffee, a fresh packet of fags and of course as a reward 1/2 a biscuit.

Steve worries that the changes or additions to the house when I’m gone will be source of pain for him and I worry about this too. Daisy Den is this massive project of love for me so that I can happy, the hot tub will be for Steve a reminder of my pain. I hope not I tell him as I’m planning fun times in there too with everyone. Now for years and years I have always insisted that ‘The Rose’ by Bett Milder is played at my funeral, I told my kids and mom of these wishes and I have been adamant about it and Steve has always hated the idea and hates the song coming on. I have written already what I want hymns etc at the funeral and our dear friend Ian will help Steve ensure all my wishes are followed. One thing we are going to do with the pension money is to pay for both our funeral plans so that the stress of ‘what would she want?’ is not an issue for anyone. So there will be no pop music, and no flowers apart from one family one. If anyone wants to buy flowers they should buy them for themselves and take pleasure in their beauty. I love daisies because of the ‘picking the moments’ thing. They are for me a flower that grows everywhere, they are free, you don’t have to have money to have them. You can see them in the grass everywhere in summertime, you can make chains of love with them, you see them wild and free spreading smiles for people like the buttercup, who hasn’t held a buttercup up to their chin and asked a friend ‘do I like butter’? Free precious moments of growing up, lazy summer days in fields with picnics surrounded by daises.

For anyone who doesn’t know the song which I have attached it. For me it means so much about life and I cry when I listen to it as it reminds me so much of the sad time when I lost my Dad. I used to play it full blast in the car and drive singing and crying at the pain and suffering he endured with his battle with Pancreatic cancer. Anyway that subject needs a whole post of it’s own. Please listen to each word and think of yourself, your life and I hope that it touches you as if I could send a message of pain, love, despair and then hope it’s all in this song to you all from me.

The wonderful Marina from Ian Rennie came for a home visit, she is so lovely. We discuss pain relief  and how I am getting on. She is referring me to a pain specialist for a review as I have less than a week now on these new tablets and then they have to stop. What then as I can’t go back to the pain I was in. They will co-ordinate with the Oncologist team and together help me to be as comfortable as possible. This is a charity, it amazes me that they are driving this, where is the NHS care? This subject is a whole post on it’s own with my frustrations so I won’t go on about it now. Where would the NHS or I be without these wonderful people, thank you Marina.

So hot tub is being delivered tomorrow and I will film it going in via the crane so you can share the moment. Mom has had to go home and she is sad about this but agrees she needs a break and some quiet time. Mom and I met up with Mary and Ann from the BHS High Wycombe store for their lunch hour. It was so lovely to see them and talk shop, talk Christmas Shop going in. I hope that they weren’t too shocked at the state of me with my stick and cut lip. Then back home to prepare tea as BFF and Andrei are coming for tea, so loaded with pain killers Steve and I cook together whilst Rebecca takes Molly for her daily walk. I am so excited to see them and so I’ll post this up and take photos later and tomorrow’s post will be an update on the evening.

The sad thing about about tomorrow is that the famous Chemo Gazebo will come down to be replaced with the hot tub. It’s given me so much pleasure throughout the summer but it has to come down. £20 well spent.

And fiIMG_4822nally to make you laugh, Rebecca is on a diet and this morning whilst making her packed lunch the cucumber appears slightly ‘phallic’ so I took a photo just for fun. My poor daughter, the things I make her do for me hey!

 

 

 

 

Hope you all had a great day and catch up with you all tomorrow.