Back to pain

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

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

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

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

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

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

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

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

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

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

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

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

 

 

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

 

What is cancer? A poem just for Wendy.

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

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

 

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

 

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

 

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

 

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

 

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

 

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.

43 thoughts on “Back to pain”

  1. I’m so sad to hear you’re in so much pain, and yes I can believe the the cancer nurses couldn’t help you as this happened to me, it just makes you so angry because they say “anything at all, call us and we’ll help you” , when you call they can’t help and you have to see your GP, it’s not like you’re faking it, you’re in so much pain and they should know that, it just makes me so bloody angry, I feel like I need to get on my soap box again, well any way let’s see if this stuff what the doc has given you will help, but if it doesn’t go back, you can’t keep on like this it’s just not fare on you,
    The birthday message that Rebbeca arranged for you was just fantastic, it made me smile and have a tear, your so loved Wendy, your such a beautiful person inside and out, I got in touch with Rebbeca and told her what a great job she had done, so looks like you might be in competition now, she’s learnt a great deal from you, please take the morphine sweet if it gets too much, it doesn’t matter if you have a hop, just think what your body is going through, it does need time out to try and recharge, try and keep as well as you can, look forward to seeing you when you come up, I’ll be there by hook or crook, thinking of you as always, love you xxxxxxxxxx

    1. Hi Tammy, thank you as always as I know you know how this shit feels. Rebecca is a love isn’t she. Where shall we all meet up on 5th, I was thinking the lawnswood pub but do you have any ideas? xx

      1. Not a clue, where ever you feel comfortable, I don’t go out so I don’t know what’s good or crap, but it is nice at the lawns wood, do you want somewhere closer to your moms in case you don’t feel well ?, only just in case, xxx

        1. I think the Lawnswood would be okay as it’s big enough, so we will arrange it for say 8 pm onwards, hope that’s okay xx

  2. Lol Wendy thanks for sharing the poem but somehow it’s all out of order!! People may find it doesn’t make sense Either mine is broken or yours is!!! I know what pain killers do, life can feel v muddled love Sarah x

  3. Just gonna say two things:
    1. Go back and re read my message I sent this morning, then re read your blog then tell me why what I was suggesting should be described as pampering!
    2. Rebecca did an amazing job with the birthday film, it made me laugh out loud and shed a tear. As I have said before you aren’t alone on this journey. It is you and your courage and inspiration that have brought a lot of people from different parts of your life together and from across the globe to support you and your family and raise awareness of this shitty disease.
    Lots love xx

    1. Thanks Ruth and thank you for being part od that video. Your hair has really grown :-) I will look at it again, but when in pain if anyone touched me I think I’d thump them lol xx

  4. Oh wen. I wish I could take all of this pain away for you and your family. You are so courageous and inspirational the way you are handling this shitty disease. We love you so much. Well done to titch for his skydive. Bless him. Love to you all. Xxxx

  5. Heavens I’m crap with an iPhone keyboard lol!

    What I did want to do was to pass on the words of wisdom I received when I was in agony with a neck problem. My GP and everyone else says that the difficult bit is getting pain under control and you often have to overdose the patient to get there and then get back to a reasonable dose. Once it’s under control don’t be tempted to come off the pain killers except under supervision. I was taking 16 tramadol a day and oramorph 2spoonfuls every 4 hours . I really know what unbearable pain is like and my heart goes out to you. They will get it under control but you have to do as they say and not try to manage. Incidentally, have you tried Macmillan? Xxxxxx will comment properly when home tomorrow.

  6. Stick with the tramadol for a week as it does take a while for them to get into your system. You will adjust to them , the tiredness , feeling queezy and feelings of uneasiness soon subside as your body adjusts to them. If you still don’t feel a little better after that week go back to docs. Sorry for bitch slapping you but it is defiantly done with love. Xxx

  7. hi wendy
    glad steve has fixed it I haven’t been able to post anything for over a week. He is so wonderful.
    I hope somebody comes up with something that sorts the pain out.
    Not very impressed with those nurses it makes me mad (substitute totally fucked off) on your behalf but its probably procedure that you have to see a GP.
    Glad you decided to push through and write your blog today otherwise there would have been many extremely worried people out there.
    thinking of you all
    Deborah
    xxx

    1. Thanks Deborah, he is wonderful my hubby. It is shocking and I worry for older people as I’m ok I have lots of love and support. I’m glad I managed to do the blog too as it was my promise xx

  8. Me again I’m sure I’m going a bit doolally got the memory of a fish!! that is an amazing poem the love and admiration shines through
    Deborah
    xx

  9. Wendy I’m so sorry you are in so much pain, this should not be happening, you need to start banging the table and making demands, my dad had brain cancer and the care he got was amazing! I really hope the tramadol starts to work for you soon, take care lovely lady x x x

  10. I wish I could take some of your pain away. I am also shocked that you have no support from cancer support. My mom does lots for White House in dudley which is a lovely place for cancer support and help xxx wish it was on door step to help you a little lots of love xxx

    1. Thank you and I know you would :-) I hope my visit again today to the doctors will shake things up a bit. Hope you are coming on 5th September for a drink, going to be at the Lawnswood pub xx

  11. Hi Wendy it’s me, not been commenting for awhile but read every blogg. Just breaks my heart to know your in so much pain and how this bloody disease is ravishing your body.
    Life is just such a bitch, its hard to understand how we have progressed so far in medicine yet your still in so much pain.
    As for the Marie Currie Cancer nurses I’m lost for words, surely it’s there job to assist you in that area not pass you on to the doctor’s, they need to be sorted Wendy!
    On a different note glad you and Steve got some time alone on your drive to meet Richard as I know it’s very important time.
    And your mum bless her, she knows you love her and will take the snapping as she knows it’s the pain that’s getting to you.
    Thinking of you everyday and miss seeing you, will come over soon.
    X

    1. Hi and I know your right. Hope to get help soon from them. Steve is on the case with pain control reading up on it etc. Would be lovely to see you all again soon, before I loose my hair hey :-( not looking forward to that xx

  12. Aw Wendy this is not good.
    All this suffering and no back up support mechanism it’s a God Dam Disgrace!!!!!!!!!
    It’s unbelievable in this day & age, what has the world come to or indeed this country!!!!!!!!
    I am devastated that you find yourself in this position, our beautiful Wendy who through all of this is educating as many people as possible even though you suffer so horrifically.

    Keep taking the Meds as advised by the Doctor like I said earlier and see where it leads, it’s trial & error for a while until they get your little cocktails of Meds a signature to you <3<3<3

    Richard & Rebecca are terrific in their passion and determination to challenge & achieve :-). I wonder who they get that from mmmmmmmmm!!!!!!!!!!
    Their Mother of course:-) and the love & support of your wonderful Steve xxx

    My huddle this morning in work was all about Wendy, your journey & they all watched your Birthday Greetings. I observed their sadness and also their laughter at the Happy Birthday Video from Rebecca. They loved it and loved Bloody Wendy Bloody Happy Birthday, Tim , Frances God so many gigglypoos in there too many to mention. A great Daisy Moment xxx

    Your mum bless her would give her life willingly for you my sweet and she knows you wouldn't hurt her for the world, it's the pain honey we all know that.
    You can give me wot not for next Wednesday I don't care I just can't wait to see you xxxxxxxxxxxxx it's been too long xxx

    The poem is beautiful bless Sarah, such honest words x

    Well my sweet I best get off and post your blog, all my sisters in Hertford, Ireland, Manchester & Nottingham keep messaging me to see if your all right as they haven't seen me post your blog !!!!!!!

    Praying you have a peaceful night
    Love & Hugs Always xxxxxxx

    1. Hi Rita as always lovely words and Steve is on the case of pain relief now. Glad your team were part of the video Rebecca made and glad they watched it. Uncle bloody Alan is a diamond hey. Looking forward to Wednesday too and so is Steve :-) drugs taken and off to bed soon for some sleep I hope xx

  13. Hello Wendy, I haven’t posted before – not just on your blog but on any blog ever. I’m a blog postin’ virgin!

    I love your spirit and love and life and you shouldn’t be suffering, it’s not fair do I’ve lost my blog virginity to ask you whether you had considered something. Your immediate reaction might be ‘no way jose’ but stay with me on this one…

    Would you have a look at South Bucks Hospice? I worked in a hospice as a volunteer after I lost my mum when I was a teenager. The very thought of hospicies gives some people the willies. They expect them to be miserable and depressing places with people sat around waiting to die. They could not be more wrong. They are filled with light and everyone is happy because they are in safe hands. They know what they are doing.

    I’m not suggesting for a minute that you move in it’s just that they offer so much more than just residential – acupuncture and massages and stuff and support for families. I had a look at one that is in High Wycombe and there is a picture of someone doing a tandem parachute jump on one of their pages – I took it as a sign :)

    They are like the Willie Wonkers of pain relief too.

    I have attached a link so you can have a little read http://www.sbh.org.uk/what-we-do/patients/patient-stories/

    I hope it’s not a stoopid suggestion.

    Goodnight Wendy

    Lizzie x

    1. Hi there ex virgin lol and I have been to the local hospice and so has Rebecca for counseling and your right not dismal places at all that smell of cabbage and bleach. I’m glad you read my blog but it’s not easy to follow hence the book that you can download from the site on the side bar.The only problem is that I hate pampering and I;m happy with a coffee and a fag. Sorry to hear about you mom, so sad xx

  14. Hi again Wend, thought of you last night on the news they had an isolation cube in the Bullring so people could go in, couldn’t see out and listen to stories like yours, the message being that however much you have the support of family etc.Cancer is so lonely and isolating.It is going on tour so should get to London areas soon, everybody who went in was really moved, maybe it can help people understand.Wend I will try to get to Wordsley pub if I can find it but won’t be able to stay long as can’t drive after dark at present (cataracts coming).do hope you get your melds sorted and the support you should be getting.xxD

    1. The cube sounds like a great idea and glad it’s moving people. Would be lovely to see you if only for 1/2 as it gets dark around 9 pm. Thanks again xx

  15. Hi Wendy,i had no help at all from Macmillan nurses,i had to chase them myself,it took 6mths,hopeless.The White house is fantastic,lovely helpful staff.
    Big Hug xxx

    1. It’s so wrong isn’t it. You either get that they were fantastic or like us they were just not there! I worry about the older ones suffering without help or people on their own xx

  16. Hi love hope you had a pain free night. I can’t imagine how you are feeling. I really hope Steve can get things sorted for you. I know he will. Everyone feels helpless. Sending love and hugs to you all xxxxxxxxxxxxx

    1. Thanks Sue, been sick and so stopped the morphine as I was a zombie and that’s not living either. we will find a way out of pain don’t worry xx

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