Thursday, 27 October 2016

Confessions of Buffalo Bill

So, I like to think that when you read my wafflings and rude stories your experience is heightened by knowing who is typing them. You know what I'm going through. I have incurable Inflammatory Breast Cancer and my little girl is in heaven. 
I think you think  'wow she's tough. She's so in control. She's so brave.' I'll let you in on a little secret....I'm manipulating you. 
You may have read my posts over the last 12 months and believed that my face doesn't change. That it is was fixed firm when the wind changed. You believe that every day I'm 100% positive. I'm sorry to break it to you. It's not true!!! I'm a fake. I'm wearing someone else's skin...I, my friends, am Buffalo Bill. 

I take ages to update you, some of the things you read happened bloody ages ago. Then I tell you stuff that isn't in chronological order. Then I skirt over things like they aren't important. Then I mask everything with humour. 
But why am I doing this? 
Because it works. 
Plain and simple. Writing helps me. Humour helps me. Positivity really helps me. It works. I feel bloody fantastic!!! Not only that, I'm convinced that I will outlive my statistics by a country mile. That's not my skin suit talking...that's the truth. 

But when things go bent I do cry and get hysterical and feel sorry for myself. I then blame myself and then I'm angry with myself for blaming myself. I've got enough to deal with without being mad at me! It's not fair to me! 
So, who can I be angry at? Whose fault is it that I'm here?  
It's no ones fault is it. There is no blame. Therefore, there can't be any anger. 

Hysteria does appear from time to time...its about how you bounce back. I tend to follow this pattern: positivity - bad news - hysteria - humour - positivity. 

I had my boob off in July. A few days later, a rash appeared below my scar. I thought it was just a reaction to surgery, someone may have left their tool on my chest whilst operating (wahey). So I watched the rash for a few weeks and then I went to Camp Bestival with Noah (I didn't take Tait as I thought he'd end up licking a portaloo). I had some quality time with the threenager, we went on the official biggest bouncy castle in the world. I got whacked in the face by some hero dad doing a flying karate kid reenactment for his uninterested 4 year old. 

I came back room the festival and announced to Scouse that I had a new rash. He was instantly on it, pushing me onto the phone to get an appointment. I think he sharted a bit too, he hid it well though. 
We got in the car to the Breast Clinic and I blurted out the following without coming up for air....

"I don't  wanna die. I'm too young. If it's back then I'm definitely and officially dying the boys will grow up without me and they won't remember me and Tait is only two he won't have a fucking clue who I am and what if you meet someone else and they move into my house and the boys start calling her mum and they introduce her as their mum at parents evening and the only memories they have of me are false ones enforced on them by you and my mates and what if she's mean to them and what if they love her and what if they think I've abandoned them one day when I don't come home and what if this woman lives in my house and you get married and then divorced and she takes all our money. What if she wants to move away and then my mum can't drive and won't see the boys everyday and what if my friends all like her and what if they think she's a cunt and what if I can't come back and haunt her and what if I can and what would I say and what would my code word be so that people knew it was me coming through from the other side it would have to be something rude like 'pull my finger' or I had threatened gemma with putting sanitary towels on her bathroom mirror instead of REDRUM. Which is funny isn't it and what if I have a long drawn out death in a hospice and have to keep saying goodbye and what if I get hit by a bus tomorrow and I've spent all day wondering how I'll haunt someone"

And breathe........

For fucks sake people, I can tell you it wasn't pleasant!!!!

I then looked up into the sun visor mirror and squashed my forehead fat together 'whoa what the fuck was that?' I thought.
I looked over at Scouse and he'd gone grey. He reached out a hand to me and instead of 'don't worry you're not gong to die' he said  'I know you're scared and I understand'. That's exactly what I needed to hear. No one really wants to be told they're acting irrational when in fact I believe it was one of my most rational moments I'd had.
I'm not referring to Scouse getting a new woman, I'm referring to the fear of death. 
I'm not overly concerned about a new girlfriend because you can't improve on perfection (yeah alright, other than my cancerous body) So I'm aware I'm a hard act to follow. 
We all die!!!! I hate to break it to you, but we all die. 
I am not scared of death. I am scared of my heart breaking when I say goodbye. I've done it before with Ally. It's a pain that rips through every part of you. A pain so crippling that you believe you will die from it.
I'm scared that the boys will think I've just left them one day. That I didn't bother to come home. I'm scared they won't have real memories of me. 

Are these fears irrational? No. No they are not. They are irregular not irrational
Not many people have to face their death. It's irregular to be constantly facing the thought that you may die soon. But let me tell you, it's a completely rational fear.  And one that has taught me a lot. That classic lesson of trying to live in the now just in case you get hit by the X3 to Cribbs Causeway. You need to bridle that fear and ride it like a fucking master!!!

I go for the appointment about the rash. There are a few back and fourths around what they think this rash is as they are all convinced it's not Cancer. Just a normal everyday rash. So simple. 
But they were wrong. 
Not unlike fake butter...its spread. 
This bastard cancer has now spread into my skin. 
Did you know you could have breast cancer in your skin? I have breast cancer in my lungs AND my skin.....no I don't have little tits growing on my skin or bazookas in my lungs...its the live cancer cells from my Inflammtory breast cancer in those places. They have spread. 
What does this mean? Well it's not good news. It means my drugs are no longer working so for a second time we move to new ones. 
I'm gradually working my way down the menu and what started off as Ribeye steak is gradually becoming yesterday's leftovers. 
You start with the best thing in the market and work your way down. 
I'm now on a drug called Kadcyla. My oncologist has assured me though that this can be thought of as just as good as the last drugs, just different. Maybe a better fit.
Kadcya....A weird name. When I went for the first treatment of this drug 3 weeks ago my mum said "ere, you avin that Cadfael today?" Yes. Yes I am. I will spend all day riding a Benedictine monk who solves crimes over my shoulder. Phowaor. 
Now those of you that pray, please, I'd appreciate a little nod in my direction and those that don't can you cross your fingers with the intensity of taking a dump after three weeks of carbs.
I need these drugs to work miracles. 
I asked about 'numbers' again....people who start this drug live an average on 2.5 years if they work, if they don't, we are talking months. 

Well this is not acceptable!!! Noah starts school in September next year, Tait has just turned two, I have a new nephew arriving in January who has the best name ever  and Scouse is still refusing to eat fruit!!!!! I need to hit these mile stones. It's non negotiable. 

Now I appreciate this is awful news and you are now maybe a little sad. For different reasons...some will be sad as they are parents and are scared for me, some are sad because it might mean I can't write this blog when I'm dead (quija board?) and some are sad because they won't have me in their lives anymore. 
Can I just say that despite this latest news I'm not telling myself I have a short time left. Absolutely not!!! I'm not having it and quite frankly this cancer can go blow itself
I see myself in my 40s you fucking cunt!!! Kiss my crinkly brown star!!!! FUCK YOU!!!!!!!! FUCKKKKK YYYOOUUUUU!!!!!! 

And as much as I will enjoy haunting everyone, in a humorous manner, I'm not getting there just yet!!! I'm alive!!! I've never been more alive in my life! 
And I'm not going anywhere. Bears Grylls is right! Drink your own piss to survive and POSITIVITY POSITIVITY POSITIVITY
It's so much better then giving up.

Keep your skin suit for when you need it (mine has been made from the skin of my friends and family) and FYI if I do haunt you, my code word is Dib Dab in honour of Scouse, whose called Keith by the way xxx 

Last weekend in Cyprus with some of the Skin Suit. 

38 comments:

  1. You are funny girl - and you a right, humour does keep you going - laughter is what keeps me going through the loss of my 28 weeker too! I hope the next in line medicine on your menu works, and you smash the hell out of your stats....I for one will be tuning in to see that you make all of those milestones, and more! head up girl, you are doing a grand job!

    Love, Ann-Marie (Steph Barron's friend) x

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  2. Any words would merely be platitudes, but as a fully paid up member of the Catholic Church I got the prayer thing in the bag :-) Illegitimi nan carborundum xx

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  3. Heidi you are an amazing person. You have a natural talent of putting humour into the situation. Your go and you kick A***. Your boys are proud of you as are all your family and friends.

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  4. Arrrggghhh, it's OK though - I agree, you are years away from being ready to die. This drug has got to work. It's not two day leftovers, it's the caviar with prosecco of cancer drugs and you are going to smash the 2.5 year made up number. You've got this.

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  5. I genuinely don't know whether to laugh or cry x

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  6. How many punches can someone take before they just say " a shit" and give up? Soon not true in your case and wonderfully so. Truelly amazed by your positive attitude. You keep going girl. x

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  7. Fingers crossed tightly!

    Do you have a gofund me page Heidi? I feel like you need some indulging and I would be happy to contribute!

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  8. Fingers, toes and everything crossed you are one brave and amazing lady keep going strong and kick its arse. ❤️❤️

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  9. Candles being lit, prayers being said, and just to complete things, fingers and toes crossed!
    From a crusty old Garage Skipper (retired!) xxx

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  10. Gutted! Cancer is shit, no two ways about it. Thinking of you and sending prayers, benedictions,tefilahs, salats, poojans, and dǎogàos - figured we could hit up all the Gods, strength in numbers and all that. (Thanks be to google for supplying the appropriate words for prayers in different religions)Kia Kaha Heidi, Amanda NZ

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  11. Heidi, I love your writing, because it is LIFE! Not all of life is rosy, some of it sucks donkey kongs. Some if it is quite beautiful. You manage to capture both. That is what is so astounding about your writing. Enjoy your family, your friends, the good times, and the bad. You my dear friend, are living life. To the fullest. Please know that you are thought of, all the way in small town Arkansas.

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  12. Fingers and toes crossed! Keep on laughing and loving, and create your own new statistics! xx

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  13. Wow, I don't know what else to say... I used to be scared I would get killed in a car crash when I was away from my little people and what would happen to them without me? I really understand your scared shit. I hope this new medication turns a corner for you Heidi. Much love to you, Scouse and your little men. Love Jan from Clevedon xxxxx

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  14. So sorry to hear your latest news. Stay strong girl, prayers on the way. x

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  15. Heidi, I don't really say prayers (although I am Catholic, but abit naughty) anyway I will say a prayer no bother. My prayer is that you make that's school run with Noah. Dee x

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  16. Just saw a program about U on tlc Channel, Hope everything will be fine

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  17. You are so brave and amazing. Thinking of you and sending so much love and hope. X

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  18. Just saw TLC program in Russia. Could not fall asleep. I also lost my baby last year. I know your pain. Thank you for blog, it helps a lot. I feel easier when see that i'm not alone. You are outstanding person, great Mom. Sending to you and your family hope and love with a big hug! Let the miracle happen!

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  19. There is nothing in carrying on with a desolate life. You are simply destroying your internal abilities and brilliant a great time. Dubai Escorts

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  20. You are amazing and so very honest. You are managing to say what others feel in your situation. I am sending you loads of luck and love xx Jan Vaughan

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  22. Holy fuck bird. I don't pray, but I'm cheering you on so much.

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  23. Your openness and courage - and language! - are startling and moving. Do hope your current hospital visit is helping. You keep on swimming- I'm adding my prayers for strength through the waves and water

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  24. Acabo de ver un programa de tv llamado "embarazos extraños " y era tu histotia. me conmovio tanto. Eres una persona fuerte y digna de admirar. Saludos

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  25. I just saw your story on TV too (Peru) and I have to say that I definitely admire how brave you are and I admire your sense of humor...even when I am sure that it is not easy to smile or always see the good part of things, I am convinced that humor helps soul TONS. I am sending you all the good vibes from this part of the world so make the new drug work for you! Take care and keep fighting!

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  26. some days ago saw on tv your history. On Chile the tv show is "embarazos extraños" and i can feeling your force, it's amazing!! figth for you, for your beautiful family and keep your smile always. Greetings from Chile

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  27. Hello Heidi, I tripped over your blog few days ago. I am totally blown oaway by your honesty and bravery. It's truly startling. There aren't many people with your amazing qualities. And your humour. And big heart. We're all crazy about you. And hurting so much when we read updates such as this. But there's a beauty in your honesty. You write like a poet. I could read you forever. This simply has to be a book. Leonard Cohen just died tonight. And I live in Canada. If he"s the prince of pathos, you're his princess, heidi - with your dark edge. Anyhoo, my sweet, I too had IBC. I was dx in 2007. They found a 7cm tumour in my right tit. Like yourself I had chemo first to shrink the fucker to smithereens. It worked, and when I had my breast lopped off they found no trace of the shit. I wasn't reconstructed. I couldn't be arsed. I was 50 when it happened so my bikini days were well in the rear view. Then I had the radiation. Anyway I was triple negatI've. Stage 3B. It didn't come back so I just got on with my life. Had a few glasses of wine at a party in 2011. I fainted. Lost consciousness. I don't drink anymore. When I woke up 3 days later I was being prodded down the legs with a pin and a doctor asking do you feel this. I couldn't feel a thing. I had broken my neck and compromised my sPinal chord. I am now a quad. I will never walk again. And my hands are folded. But that's okay. I can still look after myself. Even apply my own fake tan. Weird the stuff that's important. And I don't have to do self'catheterization. My ability to self-toilet was/is really important. My hubby stuck around. We've been married 20 years. He's a good'n. And we have our two lads still living at home with us. We've been through a lot as a family. Friendship can be many a splendour thing. Or a flimsy affiliation. I found out. Best we never have to test any of our relationships. Some will fail. And you'd be surprised. I'm a loner by nature. This helps. I wake up and it's always a great day. And then I press restart. Attitude is all. It's not often you find a person as truly steadfast as yourself Heidi. You're a breath of fresh air. I am so glad I found you. But you're killing me girlfriend. To even know of you is to love you. Truly. Madly. Deeply. Not the song. The movie. Love to you, Heidi, and to all your boys, all three. And to her. From all of us across the mIles. Xoxo

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  28. Hi, just saw your story on TLC in the Netherlands and i'm still crying in my bed. What a great whoman you are and what a tuff year you had en still have. You are an inspiration for many others. I wish you all the best and send you all my love. X Marieke

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  29. Just saw your program on TLC.
    I'm amazed on how brave you are.
    You deal with it with humor.
    And I'm just like you.
    Having lost my parents young..and having a sick husband who has a very complicated hart disease. .I just keep smiling and know that what is ment to be..will just be.
    So better doing it with a laugh. then with tears.
    My mother was also a cancer patient and the doctors told her she had 3 to 6 months to live.
    But in the end..she lived almost a year and a half after her diagnose.
    I wish you al the laughter in the world..
    And I'm thinking of you..

    Greetings from Holland

    Yasmina

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  30. Fucking ballsucking cancer.

    Go for it Heidi... kick it in the nuts.

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  31. Hello Heidi,
    I have never blogged before but saw you on the news wednew day or yesterday I think talying about not being around for your boys. As mum of 3 boys myself my heart goes out to you. I don't pretend to understand your illness but I have a beautiful friend who last year had the endurance to deal with breastfeeding cancer and this is why I'm writing. I want to share this information the hope it will make a difference to your future. And I don't mean to sound insulting or offensive but it's about diet. My friend said that sugar feeds the cancer cells and she has cut out refined sugar completely. She eats as true to its natural state as possible. Cutting out all sugar, eating a more alkaline diet, apparently turmeric is a fantastic anti inflammatory. I pray that this might help in some way.

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  32. Hi Heidi,

    I wish you all the best and long life,
    I will pray for you.
    You are a strong women.

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  33. Hey Heidi,
    I just saw your episode of Extraordinary Pregnancies and I just read all your blogposts. I really like your way of writing and I'm sure you're gonna be alive for years.
    You are becoming my spririt animal (or just spirit human), and I want to thank you for that!
    Love from the Netherlands, Renée

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  34. Hello Heidi, I just saw the show on tlc. I couldn't stop crying. And I felt that I had to write you. It's not fair that one person have to deal with all this.
    You're the most inspiring person I've ever seen! You're so brave and I really admire you! Superwoman.
    I wish you and your boys all the best in the world! Lots of Love from the Netherlands,
    Meike

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  35. Hi Heidi
    How come I am on your blog? I heard you on Radio 5 this morning and your story rang a chord as 7 weeks ago I was diagnosed with throat cancer. I start my radio and Chemo next week. The treatment runs until 9th January and my wife (who I married this year) is due to give birth to our daughter on 16th January. I completely get your desire to blog and to add humour to the situation. I started a blog a few weeks ago(http://deepdowninthemarshes.blogspot.com/) and am taking the same irreverent approach to my situation. I am hoping for a positive outcome from my treatment and wish you the same. Is there a way to subscribe to email notifications when you blog a new post? I have given users this option. My thoughts are with you and I will follow your story with interest, laughter and I dare say a few tears. x

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  36. Dear Heidi,

    Just watched the TLC documentairy about you, your husband, boys and little Ally. You made me cry en laugh at the same time. Your humor is admirable, your struggle is painful and hard.
    I am from the Netherlands, zo I can't help you from over here, but I am a hypnotherapist and I know it can help you in your struggle with the cancer.
    It is a beautiful way of communicating with your body, which is the subcouncious! Many people don't know about it, but I have been helping people with this kind of therapy in such incredible ways, also for fysical problems, that I would recommenend it to you. It helps you in a totally different way than the chemo does, but can support it at the same time very very well.
    Maybe you can find a good one in your surroundings.

    And if you don't want to do anything with my tip, it is totally oké alsof ofcourse. You will be recieve many tips I presume, so ignore if you don't like it.

    For me it is the only way I can help you from oversees :)
    Wishing you all the best and wishing that you will not die before you are 90 I send you a big hug X

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