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.
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.
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.
Oh dear Wendy. I’m worried for you with your dreams!! Even though I did laugh it’s not a laughing matter. I’m so sad that your pain is still not under control. I am also sad and outraged that the government have allocated millions of pounds for research into finding drugs to help cancer patients and when they find one that works they won’t prescribe it!!!!! Absolutely bonkers!!!! Hope your pain is better tonight wen. Love you loads. Xxx
Hi Mate, awful pain hence no response from me but I’m getting a little better. So angry about the drugs, what if I had missed it? lost an opportunity to be here another year? but what about the poor buggers behind me? so sad xxx
Good to see you today. You were a star this morning at the school sorting us all out and ensuring that the catering for the LibDem conference went ok and not even a mention of your heroic efforts in the blog. We had loads left over and that all went to the homeless and a food bank.
The only thing I can think of is an extra night lock on the front door with only Steve and Rebecca having a key plus one in a glass case for fire. Difficult problem that but lots of people sleep walk so it’s probably worth a Google.
Wheelchair cushions: I told Steve to make sure it’s 10cm thick. There’s a place in Downley, see http://independentlivingconsultants.co.uk as they would be able to get you one or eg http://www.amazon.co.uk/Wheelchair-Cushion-Bevelled-43×43-x10cm/dp/B00187QHRE or http://www.completecareshop.co.uk/wheelchairs/harley-wheelchair-cushions/harley-comfort-plus-wheelchair-cushion-43cm-x-43cm-x-10cm. Don’t go for anything less than 10cm/4 inches.
So I hope tonight is better. Believe you me, you are the bravest person I know. There is nothing do lonely as pain in the middle of the night. Xxxxxxxxxxx
Lovely to see you too and sorry for crying all over you. Glad food went to the food bank. Thanks for the tip on the wheelchair pad. And could idea about keys. Hope to see you soon. xxx
PS You can get the Vat back on the cushion.
Well done Rebecca and Steve your pics are great in the calender…still cant believe the pain you are in Wendy i just wish you could get it sorted…that dream bless you… never mind the way you tell it i cant help but chuckle although its not funny…so glad you have been put forward for the drug but as you say its awful for the people that wont be able to have it….but you know what you are fighting their cause and alls i can say is god help parliament when you get there….you go girl so so proud of you…have a great weekend with the family glad Richard is home with you this weekend xxxxxxx
Didn’t Rebecca do well, she is so shy so I’m so proud of her, Steve doesn’t care so that’s different but for Rebecca to do that was massive. I’m on the case with the drugs stuff and will do research with Steve as this is awful for people who are behind me in the cancer queue and I cry for them and their families cos it’s not fair. Love to you all xxx
This government is just so unreal, this drug can help so many but they play God and stop it, talk about dangling a carrot, it’s so cruel that sufferers will know that they could of had it but now they can’t, I can understand you being angry, I bet that they or their loved ones would be able to have it,
So glad you have gone with the name, chuffed to bits. Hope that you have a better night, don’t worry about the dreams, I’m sure you will be ok, I’m not sure about your carpet though,haha,
Love you as always my strong lady, xxxxxxxx can’t wait for my calendars, xxxxxxx
Hi Tammy, no thank you, as soon as I saw your suggestion that was it for me. Awful pain hence no response from me so I’m so sorry as I hate not replying to all my wonderful comments of love and support. We will soon have our ‘she sheds’ hot lines set up hey mate xxx
i agree with you about the government that is taking away a lifeline to so many families but can still afford to pay themselves a whopping 10% pay rise when nurses only got between 0-1% pay rise. Polititans make me sick. A bunch of selfish self serving twats. Politics should come from a passion of making this world a better place not just making it better for themselves at the cost of the sick and frail. Makes my blood boil. Rant over. Xxx
Great rant lol – there are some good people in politics but not many. So I think it’s time for some ‘power to the people’ hey and I’ll do whatever I can to help others or just to bring the actual truth to light if I can xxx
Hi Wendy
Now I’ve heard of wet dreams but never expected that.
I did laugh but for the comedy way in which you tell the story.
Whit whoo Mr Wonderful watering the plants ….. I’m seeing a theme here. Hmmmmm moving swiftly on.
Have a fab family time plenty of Live Tub moments xxxx
Love Tub ooooooo xxx
Hi mate, glad you like my mr Wonderful’s bum, cute hey lol and you have to laugh at my dreams hey, I wouldn’t mind if I was pissed and did it but to have no control on your actions is a little unnerving when good knows what I’ll do next. Sorry for the late response been in terrible pain here and I can’t wait to see the pain specialist on Monday, love to all and Millie of course xxx
Devastated that you are still on the merry go round of God dam pain my sweet 🙁
Let’s pray that the pain management specialist appointment on Monday sorts it out once and for all X
Ok here is my bag of mixed emotions, I am ecstatic that you have been fortunate and blessed to get this drug that will buy you time absolutely bouncing I am, God bless you xxx
Heartbroken that so many will not have this opportunity, I can not for the life of me understand how the government are allowed to make the decision to withdraw medication, we are meant to preserve life something that is so very precious. 🙁
Wendy I beg you to give parliament your voice in true Trendy Wendy Style leave them in no doubt of your thoughts. This is not the time to be humble for the opportunity to be there, it’s a time to be the voice of thousands my love and my goodness I am so pleased and proud it’s you. xxx
You must be distraught worrying about your dream like state, I am also heartbroken that you sit alone in the dark of night in pain & crying, please mention to the pain management specialist this dilemma clearly its attributed to your medication so he/ she will know how to rectify it x
I’m loving the calendar month sharing, and lookin forward as I’m gonna whoop some ass and sell out of my 100 before any one else lol lol lol
Have a wonderful weekend with your family sweetheart and I’ll be at 9 am Mass in the morning for candles & prayers xxx
Loves, hugs & slobbery kisses xxxxx
Hi my angel and I’m so sorry I was in so much pain yesterday that I couldn’t even reply to you. I’m going to do research with Steve and make sure I have all the facts but your right and I think it’s time for ‘power to the people’ hey.
If you want more than 100 if you think you can sell them then you can always have more, let me know after you have had a thought about it cos 100 is a challenge. Love to you always my angel xxx
Dear Wendy
I love reading your blog you truly are an inspiration, I’m a friend of Louise Lowe and got to your blog from her sharing your posts on her FB timeline. I really don’t know your coping with so little sleep and your pain and still managing to keep an amazing sense of humour. I am so glad the Love tub is helping. I feel your fustration reagarding the cancer drug withdrawal am happy you are able to receive it and really hope it will buy you more quality time with your family. I can’t imagine how you manage to get through each day never mind write about your experience knowing that your have a terminal diagnosis you are an amazing brave lady. I am a veterinary surgeon and deal with death and euthanasia every day but not on a human scale and have not been touched by the cruel hand of cancer amongst close friends or family yet – I am very lucky. Your blog makes me thankful for what I have and to live life to the full as you never know what’s round the corner. my very best wishes Shona xx
Hi Shona, so lovely of you to take time to write to me, I appreciate it so much. Any friend of Louise’s is a friend of mine, she is so lovely. The truth is I have no chioce but to deal with it, I meet people who don’t want to know how long they have or don’t have but not me, I need to focus on my loved ones and set them up the best I can. In the meantime I’m not done with living and my quest is to save anyone from going through this shit by raising awareness and I will do anything I can to achieve this.
I have to have a focus, it helps me so much. I never thought that anyone would be interested in my story and so when i get messages from people like you, it encourages me so much to carry on, so thank you so much. Your words will be in the next book forever too which I love as it’s our story xx
Great news re the drug, so glad you made it in time, love the comfort you get from the hot tub and why not enjoy what you’ve worked so hard for in your career.Re the dreams thank goodness you didn’t have your mobile,Susannahs friend fighting a rare cancer did her dreaming but texted all her friends with her adventures in the early hours,but it did make them smile despite the seriousness of the situation and so did your wee adventure,a it of humour never goes amiss just turn off your phone eh. Xx ex ex ex
Hi Boss, gosh your right but old one, she told a few friends via her phone, I just told over 75,000 people lol but you have to laugh hey. Hope your knee pain is getting easier, pain can be so draining hey. Love to you and the family xxx
Can’t wait to buy a calender hope out BHS have them love you Wendy xx
Hi Heather, they will of course be available in your local BHS store in Wycombe in 3 weeks time. If you do pop in ask to speak to Mary or Ann and say hello, say your a friend of mine, they will love that xx
I’m ever so touched that you liked my message. I thought it was me that was dreaming when I saw you had shared it. Thank you Wendy x
Flipping good job Fern didn’t tell you to p**s in the coffee machine! Like other people have said I’m not sure we should be laughing but you tell such a funny story. Perhaps you should mention it just to keep you safe.
I find it so sad to read when you have been crying and in pain. I hope the pain specialist has something in their arsenal to soothe you and make you comfortable.
Taking away the funding for drugs that have been developed to extend our lives is wrong wrong wrong. I am so glad that yours have been signed off. Don’t the people who make these diabolical decisions consider that poorly people have enough to contend with without having to go into battle to get the drugs that should be theirs without question?
Hope you are having a wonderful time with your family. Goodnight \Wendy
HI Lizzie, your message just touched me so much, it was the open the door and have a coffee thing, the welcome as that’s just what I’m like, I love people and your words just meant so much. Between Fern and Dr Who god knows what I’ll do next hey but this morning I’m back to the normal routine thank goodness, lots of love to you xx
You – flash?? The only thing you can be accused of is being too honest & speaking your mind ( maybe that’s why we didn’t hit it off straight away but soon realised we were actually very alike) sending you lots of positive thoughts
thanks Marilyn for your honesty and lovely comments xx