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.

 

 

 

 

 

Published by

Wend

Married to Steve, I have two children - Rebecca and Richard. Steve has two children, Lauren and Chris. Rebecca lives with us (nurse Rebecca) and my mom Judy also has become nurse and housekeeper but lives in the West Midlands. My son is in the Army and comes home when he can. I am 47, born in 1967 and I was told I had bowel cancer on 22nd Feb 2015 and this blog is my journey through it. I hope it helps you as you were the reason I started it.

30 thoughts on “Horror & Hope”

  1. So sorry you’ve been so unwell. I really enjoyed Friday, it was just like old times (apart from the pain & tears) for a couple of hours. I was so worried you were over-doing it, but by the same token I imagine it must be nice for you to feel “normal” for a short time and do something fun. I’ve felt so guilty for the last few days, maybe it was my fault for not demanding you should stay at home (but you know I’m too scared to argue with you!) I’m guessing those tablets they let you stay on for the extra week lowered your immune system enough to let an infection in. I hope they let you home soon and if there is anything I can do, don’t hesitate to ask. Love & hugs from me & Dylan xxxxxx

    1. She’s terrifying in a kitchen, isn’t she, Paul?. You can’t argue can you? I tried to make her sit down, but no, she stood there bossing us all around and we meekly obeyed!

  2. So glad you’re feeling well enough to blog. Can’t believe the attitude in A and E. I’d complain about being humiliated in that situation, blow the personal space bit! Ward 10, that’s where Ian was, or the male version of it and he was looked after very well with his finger infection. So stay there as long as you can.

    Rebecca was just AMAZING. It’s a privelage to know her.

    Lots of love as always xxxxxxxx

  3. You are amazing. Your spirit defines you and it is beautiful. Keep going. Really pleased that you’re recovering from the infection xx

  4. LOVED the rant about NHS! It shows that you are feeling better, getting furious and ready to fight!! I seriously hope that your Parliament visit is recorded!! I’m really glad that you are feeling better even though you’ve had a horrible time in the hospital. Reading the blog today just made my heart swell with a big….”Wendy’s BACK!”.

  5. Omg you are feeling better wow what an nhs rant lol but well said as always now keep up those gentle secret exercises and a little bit of doing as your told and before u know it you will be back in the hot tub with mr wonderful watching over the construction of daisy den xx well done nurse Rebecca you are completely awesome and hugs to judy I love egg sarnies love and Juddy hugs be nice to the nurses they will release you quicker xxxx

  6. So glad your on the mend Wendy just look after yourself….well done Rebecca for looking after your mom so well….alls we all want is for you to get well so dont worry if you cant write your blog as often…lots of love to you all…you are always in our thoughts xxxxxxxxxx

  7. Wow someone’s feeling a bit better rant, rant, rant that’s our Wendy, yah!
    So sorry you’ve been through more shit though, think we can safely safe enough is enough a Wendy!
    Rebecca you are a star taking over where the nhs should have done, personal spare, bollocks!
    Rest and gain your strength again Wendy, hope you will be at home soon.
    X

  8. Hi Wendy so pleased to hear you having an enormous rant it must mean are feeling a bit stronger but totally agree on all accounts what ever has happened to our NHS and our hospital on our doorstep. When you are well enough we will have a rant together about this. Thank goodness you had Rebecca with you. Well done Rebecca for coping under such worrying circumstances you really are a wonderful daughter xx I hope you will be well enough to go home soon don’t the doctors know you have a Daisy den to supervise being built. Love to you and all your family XXX

  9. It’s so good to hear from you!

    We are so fortunate to have the NHS. Some of the life saving surgery that goes on everyday would mean selling your home to pay for it in other countries without a Health Service or the right insurance, yet we don’t even see the bill. I was delivered into this world – probably the same as everyone else – by an NHS Doctor so
    I for one would be willing to pay more for it to save it. As long as I could be sure it wasn’t all going to be creamed off by the fat cats or wasted on another layer of useless business managers with no medical training whatsoever.

    When there are nurses standing by – who presumably went into nursing because they cared about people – watching someone struggle (and fail) to do the most basic of bodily functions, well it makes me want to weep. The very definition of nursing is invading someone’s personal space. Who on earth comes up with all this buggery bollocks?

    The first thing I would do if I were put in charge of the NHS was to get some decent food out to the patients and get rid of the nurses station lit up like the deck of the Starship Enterprise all night with buzzers going off more furiously the quick fire round of Never Mind The Buzzcocks.

    I’d go back to the old Nightingale wards (beds down either side), long wooden table in the middle with a vase of flowers on, immaculately dressed nurses and a proper Matron – someone like you in fact! Someone who doesn’t mind shaking a few feathers and gets things done.

    Hope you a feeling better by the hour Wendy and home very soon.

    p.s. nice @rse by the way ha ha xxxx

  10. Well for feck sake and all that’s Holy will you stop sending me into OMG mode!!!!!!!!! Honestly I think I gained a couple of years with worryxxx

    What a traumatic time you, Steve, Rebecca and Mom have had and poor Richard so far away X
    My goodness you don’t do things by half my precious.<3

    But the good news is your rallying my lovely and I would expect nothing less, you just can't keep a good girl down :-)

    You have business to attend to in parliament so your really only there to gather evidence, that's my take on this situation<3

    Now continue to recover Sweetcheeks and help all those other patients because these things happen for a reason.
    Other sufferers need to see your true grit & determination to give them the reason to fight.
    You will help so many just with your loving nature and your mothering instincts, its all part of the wonderful you <3

    Now rest easy and let's get you sorted, I'm so pleased that ward 10 are looking after you, I hope your lady bits were tidy :-) lol xxx

    Big loves & Hugs always xxxxxxxxx

  11. Really glad that you’re feeling better, I hope you have a good rest and get some strength back while you’re in there. Loving the calendar pics, a good excuse for a trip to Kingston when they come out. Stay strong you are an inspiration, I look forward to reading your post every day xx

  12. Oh wen I’m so glad your on the mend. Rebecca is an angel and I will make sure she gets treated as one this weekend. WE are really looking forward to seeing her and we will take good care of her. I will see you on Monday so get yourself better and do as the doctors say. Lol!! Good rant about the NHS. You make it sound so simple. Your parliament trip I’m sure will be a triumph!!! Love you loads and love to Steve Rebecca Titch and Judith. See you all Monday. Xxxx

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