Trials and tribulations

“I thought I had it but no, looks like I’ll have to get the doctor,” said the smiley nurse before trotting off. She’d had two attempts at inserting a needle and of course, with my crap veins, two failures. Track marks and bruises stained my arms making me look like an extra from Trainspotting.

The doctor arrived and another two attempts were made but to no avail. My CT scan was swiftly cancelled. Shit, shit and flying shit, I really needed the scan to see if the Eribulin chemotherapy was working. It was decided to reschedule it for the following week when I was due to have a port fitted into my chest; that way the skilled chemo nurses could cannulate me and we could get both procedures done in one day.

I’ve never been bothered about needles but the last few visits to the hospital have led to pain, discomfort and an increasing sense of dread.  The nurse can’t tell immediately if the needle she has just inserted hasn’t reached its target.  There is a certain amount of manoeuvring; a little turn right, maybe a nudge left, pushing in a bit deeper.  My shy, retiring veins seem to sense when a needle is near, shrinking away just after the nurse’s refrain, “short, sharp scratch,” because they know as I do that it will neither be short, nor just a scratch.

The day before the scan I was worried about the nurses not being able to find a vein and brought this up in my EFT session with Emma. She encouraged me to tap the mantra ‘my veins are strong and robust,’ at every opportunity over the next 24 hours. Remarkably given the recent record, the chemo nurse managed both to put the cannula and take blood from a different vein at the first attempt. Later, when we were told at the CT scanning department that I needed a bigger cannula for the dye to be injected into we returned to the chemo ward and the same nurse managed to cannulate me first time yet again. Something that hadn’t been achieved in about six months!

I’ve had a few scans in the last twenty months and you’re always told the same thing. “You’ll get a strange taste in your mouth and then you might feel like you’ve wet yourself, but don’t worry, it’s just the dye.” No matter how reassuring their bedside manner, there’s nothing relaxing about feeling like you’re pissing yourself whilst laid on a bed with three people watching you from behind a screen.

As I passed slowly through the giant Polo mint-shaped scanner I used the visualisation techniques I’d been taught, imagining the cancer being wiped away by a white handkerchief (I’m aware I sound quite mad) and willing a clean scan.

When I jumped up to leave the radiographer asked, “Is someone with you today?” and immediately I started to worry; I imagined that the scans were bad and that she was checking I had support with me.  This made no sense as I wouldn’t get the results until the following Monday but that’s how my mind works.  From positivity to hideous outcomes in the blink of an eye.

Next stop was the port and by this point I was pleased I was having a general anaesthetic. Finally, a bit of peace. The operation went smoothly and Tom and I were soon in a taxi on the way home. We had a weekend of seeing friends and relaxing ahead of us, and then on Monday we’d see Professor Hope to find out if the Eribulin was working.

I’m not sure why but I don’t get as nervous about results as I used to. Perhaps after all the scans and difficult waiting I’ve used up all my nervous energy; I just don’t get that feeling of my heart taking a dive into my stomach any more.  I think Professor Hope has a lot to do with it too because I know he’ll have a plan that he’ll have thought hard about.

I could tell Tom was nervous but the wait wasn’t long and after welcoming us in Professor Hope thankfully got straight to the point. “The tumours haven’t shrunk but they’ve not progressed either.”

How is it that the option you don’t even consider is often the one that materialises? How do you learn to expect the unexpected? I’d only thought about how I’d feel if they’d gotten smaller or grown; not if they’d stayed the same size. Professor Hope explained that the Eribulin had had an effect, but in his book this wasn’t good enough.  He wanted me to try something different.

A few weeks before Christmas I received an email from a research centre that Professor Hope had put me in touch with the previous summer.  They told me about a trial coming up but specified that to be eligible my cancer had to test positive for a certain receptor, which is only present in 20% of cancers. This is my interpretation of the information so I might be totally wrong but science was never my strong point! In any case I signed the consent form allowing them to test an old tumour sample that must have been hanging around in a fridge somewhere and thought nothing else of it.  A one in five chance did not sound like I’d be going on this trial.

Remarkably, I was wrong. A week before my CT scan I was told that I was eligible. Finally here was an occasion where I fitted into the slim percentage for a good reason! The chance of getting breast cancer in your 20s is about 1 in 2000, and only 20% of women with breast cancer have the triple negative variant that I do. God knows how miniscule the percentage must be of women in their twenties who have a hormone receptive breast cancer that ‘flips’ to triple negative, but I’m sure you get my point.

On this occasion the timing was perfect. The call came just before we were due to decide what plan of action to take if it turned out that the Eribulin hadn’t been working, presenting us with another option.

And so I’m headed for a clinical trial. I went for a meeting yesterday where the doctor explained all the ins and outs in a level of technical detail which I just about understood after he drew a sketch of how the drug works. Brainy Tom seemed to pick it up with just verbal explanation but Thicko At The Back needed a bit of artwork to help her understand just what was going on!

How do I feel? I’m on neither end of the emotional scale. I’m not hugely excited to be on a trial but nor am I devastated by the news that the cancer hasn’t shrunk. I trust Professor Hope to make the right choices for me, and from the couple of times I’ve met them I trust the team at the research centre as well. I’m getting used to the road taking sharp turns and learning to just follow the path that is laid before me.

And the bonus if this stuff works? (I’ll have to call it ‘stuff’ as it’s so new that its name is just a combination of letters and numbers) I may have hair just in time for the wedding.  From a vanity point of view things are looking up!

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48 Comments (+add yours?)

  1. Matt Seymour
    Feb 01, 2012 @ 12:54:56

    Great to hear you got on the trial. Having faith in Hope clearly does the job :)

    Matt

    Reply

  2. Mirjam
    Feb 01, 2012 @ 12:55:15

    Great news that you are eligable for the clinical trial but I can understand that you might be a bit disappointed about the results from the scan. But hey, the tumor hasn’t grown so that’s good news too. Like your thinking from a vanity point and I’m sure you will have hair in time for your wedding to Tom. Sending you positive vibes and lots and lots of hugs. xxx

    Reply

  3. Wolri
    Feb 01, 2012 @ 13:01:59

    I so hope this works for you, Ellie. My friend’s hair is growing back now and is very different from that she had before, soft and fluffy, and growing so quickly. Her trial worked better than she hoped although she has found more lumps on her back. She’s waiting for her results but like you, she won’t give in. I admire you both more than words can say. Love and hugs xx

    Reply

  4. Marianna
    Feb 01, 2012 @ 13:04:43

    Bravo Ellie onwards and upwards! All the best to you and Tom.
    Marianna

    Reply

  5. elusivelysium
    Feb 01, 2012 @ 13:15:33

    Great news! Thinking of you both and wishing you so well… Keep positive. We are all gunning for you all over the world! :D
    Julie

    Reply

  6. Rebecca
    Feb 01, 2012 @ 13:17:12

    Fingers crossed that the ‘stuff’ works! x

    Reply

  7. Steve, Clapham
    Feb 01, 2012 @ 13:17:30

    Great that the tumours haven’t grown and that you’re eligible for the trial, Ellie! Will pray for incredible results. In other news, there’s an opportunity to explore life, God, miracles etc at the Dogstar pub in Brixton next Tuesday at 7pm – friends of mine are running the Alpha Course there. It’s free and you can turn up and never go back if it’s not your thing. I recommend it and so does Bear Grylls! www,alpha.org.uk for more info :) God bless.

    Reply

  8. elaine4queen
    Feb 01, 2012 @ 13:17:51

    here’s to hair!

    i have a chronic condition which is neither progressive nor degenerative and have spent the past decade having to deal with the twin specters of hope and despondency. i have actually trained in pain management and taught about acceptance, but it is a devil of a thing to achieve with any real constancy. having just the right amount of acceptance is something that has to be revisited over and over again. well done for being in a good place about what is going on for you.

    Reply

  9. Melanie Richardson
    Feb 01, 2012 @ 13:35:21

    So glad to hear another option is available to you. It’s all about picking a path through as best you can to come out the other side, as I’m sure you will. Much love, Mel xx

    Reply

  10. Alan Charnock
    Feb 01, 2012 @ 13:40:27

    Can I just point out its February and I’m still reading your amazing blogs, bring on the wedding, I’m so glad you have another option and I have everything crossed that Professor Hope works some magic. x

    Reply

  11. Lisa Facey
    Feb 01, 2012 @ 13:41:28

    Great news about the clinical trail Ellie. I manage clinical trials for a living and have done for 15 years, I am still amazed at modern medicine and what it can achieve. Positive thoughts being sent to you, keep fighting it, you’re a winner.

    Reply

  12. Christine
    Feb 01, 2012 @ 13:52:57

    Ellie, can you please email me
    Thank you
    Courage, Strength and Healing vibes coming your way
    Much love
    Christine
    x x

    Reply

  13. JulieG (@Go1dfinch)
    Feb 01, 2012 @ 14:03:00

    Great news Ellie, positive vibes to you xx

    Reply

  14. Linda Ann McCrea
    Feb 01, 2012 @ 14:13:47

    Ellie,
    So impressed with your gutsy writing style and pellucid honesty .
    Firstly, Tom may be brainy but you are not a Thicko ! But I kinda know what you mean as two people can receive same message but each interpret differently or understand using different senses.For you it was the artwork. Well done to the Doctor who can draw or draw well enough to clarify treatment ! In my view , it always takes the two to grasp the complete picture and your Tom is exceptional. .Also I fully agree with Steve from Clapham to pray for incredible results.Truly,Ellie that is the powerhouse
    Also, totally AMAZING that your phone call from the RESEARCH CENTRE was so timely. I am estatically happy ,as you are that you qualified for this innovative therapy.Congrats .
    As you correctly say, for once being the minority percentage was actually positive .
    You shall be well and you shall endure this arduous journey. Your path will lead to victory.I feel assured of this.
    Blessings, hugs, humour, and prayers for your future drug trial.May the stuff do it`s work and fast !
    Linda xxx : Belfast Northern Ireland

    Reply

  15. Elisa
    Feb 01, 2012 @ 14:43:00

    All I read in this post is:
    the tumor hasn’t grown and you have a brand new shiny treatment.
    2 very good news, this is how I see it.
    You are, more than ever, a winner!
    You go girl,
    Elisa

    Reply

  16. Gary
    Feb 01, 2012 @ 14:56:14

    That road with the sharp turns is paved with yellow bricks, follow it to a bright and happy future Ellie. YOU CAN DO IT.

    Reply

  17. Helen Foudls
    Feb 01, 2012 @ 14:58:41

    The trial sounds like a good opportunity, and its good news you’ve finally been in the minority odds for a good reason! I remember how bad it was to get veins after being treated for a while – good news is your veins slowly recover the longer you spend without treatment so there’s more hope for the future. Sending helpful thoughts to you re the hair growth – fingers crossed its all back by the wedding xxxxx

    Reply

  18. Jan
    Feb 01, 2012 @ 17:05:05

    Hi Ellie,
    You have had a ‘Rocky Road’ of late, and definitely NOT the chocolaty one we all know you like!! I do so feel for your poor veins…but hey! things are looking up, I just know this trial is going to be good for you, so keep strong and positive .
    My love and prayers are with you Ellie
    Jan x

    Reply

  19. Chloe Greene
    Feb 01, 2012 @ 18:00:27

    Beautiful Ellie I am so glad to read the update and as ever you inspire me with your humour and your honesty.
    And it’s terrific that you don’t get so nervous about results any more. Your mind is strong and getting stronger.
    You certainly ain’t no Thicko At The Back. x

    Reply

  20. theapie
    Feb 01, 2012 @ 18:12:44

    Being a science geek, I will be excited for you about this news, for it is very exciting indeed. :) As always my thoughts and prayers are with you Eliie.
    Casey

    Reply

  21. Amanda
    Feb 01, 2012 @ 18:21:05

    Good luck with the ‘Stuff’ and hey even if you don’t have your hair for the wedding Tom will still love you all the same, beauty comes from within and you are certainly a beautiful girl xxxx
    PS Your blogs stop work in our office we all stand around the computer together and then talk about you for the rest of the afternoon like you are one of our sisters. Sisterly love to you Ellie :-)

    Reply

  22. Margaret
    Feb 01, 2012 @ 18:34:45

    Ellie,so glad to hear you’ve got on the trial . I’m sure it will bring good results ,fingers crossed. I really hope your hair grows back in time for the wedding.Sending you lots of love&hugs. Margaret xx

    Reply

  23. Rae
    Feb 01, 2012 @ 18:50:36

    I’ve had a CT with dye and had the same experience of weird spots of warmth in my body. I didn’t actually think I had pissed myself, but it was very strange and disconcerting.

    Hair for the wedding and a new trial! Good news all around!

    Reply

  24. marie hitchman
    Feb 01, 2012 @ 19:09:01

    Good luck with the drug trial & the planning of the wedding. It will soon be here. You inspire me thank you best wishes Marie Hitchman

    Reply

  25. Tamzin
    Feb 01, 2012 @ 20:44:04

    Hi Ellie,
    I’m a biomed student, and avidly follow your blog. I’ve recently been learning about the development of cancer drugs and the clinical trial process.

    Just wanted to share with you that there have been SO many instances of these trials being stopped. Not because the drug wasn’t working, but because it was so amazingly effective, that it was decided it would be unethical not to give all the participants access to the life-saving medication.

    Hope this is something you can add to your positive thinking bank xxxx

    Reply

  26. Karen
    Feb 01, 2012 @ 20:56:33

    Great news about the forthcoming trial and your eligibility! I think of you such a lot and always send positive vibes your way. Your wedding day will be here before you know it, with or without any hair, and you will be radiant with strong Tom by your side. Look after yourself and good on you, you continue to go from strength to strength, love always Karen :-)

    Reply

  27. Jill
    Feb 02, 2012 @ 03:54:22

    Excited about these trial drugs :)

    Happy 2012 Ellie! I hope you have a ball planning your big day!

    xx Jill and Jordan

    Reply

  28. Ann
    Feb 02, 2012 @ 08:26:46

    Hello Ellie, very best of luck for the new drug. I too had to have a port inserted as my veins just wouldn’t give, and, yes it was my worst nightmare of treatment. Its as if we are a pin cushion and have to just get on with it. Once my port was fitted, unfortunately that too used to get blocked so sometimes cannula had to be inserted; after all the probs. finding veins a nice, quiet, unassuming nurse came along with a large bucket of warm water which I had to put my one and only right arm into – this helps to warm the blood and open the veins! Why on earth couldn’t this have been done in the first place? There’s always that one nurse who is quiet, industrious, but comes out on top. We are not pin cushions, we are human beings who need all the help we can get, even if it is a bucket of warm water for twenty mins or so to get things moving. I say ‘stop wasting all our time nurses and just get that bucket of warm water’, and if anyone is allowed to drink, a small glass of red wine the night before treatment really does work too as it dilates the blood vessels. Anyway, rant over Ellie, move forward, no time for bad vibes, and leave those few incompetent nurses behind you. We still love them, but only the ones who score the vein first time ! Ann x

    Reply

    • Anouska
      Feb 03, 2012 @ 20:30:52

      Thanks for sharing the tip about the red wine Ann. I have to sit with my arm in a bucket of hot water before chemo. But I never knew a glass of red could help. I shall be partaking in said glass before chemo in 2 weeks time!

      Keep up the great work Ellie. Every single blog entry has rung so true with me. Be it giving up the rocky road, fighting off a vampire nurse or indeed the ‘pissing oneself’ feeling on the CT scan bed. It’s lovely to hear someone being as upbeat and positive about these experiences as I am. My friends and family think I’m weird because I’m coping with cancer at 35 with a smile on my face.

      Keep kicking arse, my fellow ninja!!

      Anouska xx

      Reply

  29. Laura S
    Feb 02, 2012 @ 11:41:46

    Will pray that the ‘stuff’ does it’s err stuff.
    And also that your hair grows like a bastard.

    Reply

  30. Rachel
    Feb 02, 2012 @ 16:02:26

    You are an amazing person………… Wishing you all the health in the world and praying this trial is a positive experience for you!! x

    Reply

  31. Louise
    Feb 02, 2012 @ 17:06:08

    I’ve got everything crossed for you Ellie – you are an inspiration.
    Wishing you luck and love,
    Louise XX

    Reply

  32. nelly oneill
    Feb 02, 2012 @ 18:28:09

    India calling, They call everybody mr Jay or ms Swati in India, so MRS ELLIE good luck with the stuff, l will get my mum and sister to get a mass said for you .
    you are a fantastic women and so is your tom, l read your blog out to the buying office and they all wish you well.
    nelly x

    Reply

  33. Margery Allcock
    Feb 02, 2012 @ 18:49:46

    So good to hear that you’re suitable for the trial – it sounds as if you’re the lucky one!

    Your smiley nurse said “I thought I had it but no, looks like I’ll have to get the doctor,” and I thought “no, please no – get me a chemo nurse!” My nice chemo nurse is an expert at finding blood in a vein, and she always has a mini-electric blanket for my arm. And I’m lucky too – when I have to get a blood test I have a choice of two places – one where the nurse thinks “third time lucky” is just a starting point, and the other where Elaine offers up a huge needle, I don’t feel a thing, and there’s blood straight away … guess which I choose?

    Reply

  34. lorly
    Feb 02, 2012 @ 21:19:30

    ellie, that was such good news that they haven’t grown, and some of that has to be down to your sheer determination and strength, and then you get this trial, i know you must be so fed up, but keep fighting, and fighting, cause you are doing so flipping great, lots of love xxxxxxxx

    Reply

  35. Louise
    Feb 02, 2012 @ 21:24:39

    Pleased you’ve got on to this new trial & will be praying (in a non religious way) that it shrinks your bastard tumour! I’m wearing a wig for my wedding my short hair looks shit at the moment. All the best x x

    Reply

  36. Rosie Butler
    Feb 02, 2012 @ 22:29:41

    Hi Ellie

    typical – just when you’re getting used to things a twist and turn in the road takes you in a completely different direction – still it ain’t over until the fat lady sings.

    We had our share of “novel treatments” too – treatments so new that they are just a jumble of letters. Like you, our daughter was blessed with a straight talking consultant not afraid to look at the left field of things. Keep positive… keep doing things that you enjoy and let the medicine work away in the background.

    dream your dreams and dream them big !

    love and hugs

    Rosie Butler

    Reply

  37. Emma Allinson
    Feb 03, 2012 @ 22:40:33

    Ellie, Your blog is inspiring! You are one tough cookie. Keep fighting (like I need to say that) and I hope you are feeling better x

    Reply

  38. Helen
    Feb 04, 2012 @ 00:18:34

    Ellie,
    I’ve been following your blog since the article in Grazia- reading, but never commenting. I want to tell you that you are an amazing girl and all our family wishes you the best of luck with the trial. You are in our prayers.
    Hugs,
    Helen.

    Reply

  39. Elizabeth
    Feb 04, 2012 @ 10:15:23

    Very exciting news on the trial Ellie.
    Hope we get enough snow in London tonight to build snowmen tomorrow, simple pleasures are wonderful for the soul :-)
    Thinking of you. xx

    Reply

  40. tracie
    Feb 04, 2012 @ 12:20:24

    Well Done Ellie, You were in my thoughts today, I had not seen a new post for sometime and I was thinking hope she’s ok, I usually get an email to say you have posted which I log on and read. Anyway I logged on and you had posted just goes to show the power of thought.

    I have emailed you a few times, but just to say, No one knows the power of the mind……when you visualise and believe something the mind takes over. Keep on meditating and believing the tumours are shrinking and going away. Keep doing this over and over again, feel how you will feel when the new trial drugs kick them out of you once and for all, feel the joy and the happiness. Write down how happy you will feel. Write up a draft post to tell us all how you are when you announce to us all that the tumours have gone. Keep working on the draft post.

    The key to any illness is the mind keeping positive. Ask your body to do something, believe with every fibre of your body that if is healing itself and sit back and wait to receive. It works every time. Keep going girl your right your chances of this happening to you are one in a billion, but just think your chances of beating this are fantastic …….. tracie x

    Reply

  41. ladyleftfieldlover
    Feb 04, 2012 @ 16:38:50

    Yep, that wedding is not too far away now! It will be amazing and you will look gorgeous. Can’t wait to see the pictures. Oh, and good news that those d***ed tumours haven’t grown and so pleased you are on a new trial. Talking about snow – I was expecting driftloads of the stuff (I live near Oxford) this afternoon. Merely a scattering, so far.

    Reply

  42. Ann Newman
    Feb 04, 2012 @ 18:15:19

    Ellie, Ellie! You are there for us all fighting, fighting, fighting like a good ‘un. Those tumours are now too afraid to grow – you give them such a hard time. Keep it up my lovely. We are all with you through all of this. Yes get out there in the snow and build a bald snowman!! Incidentally we hardly even have any cold weather down here in West Wales? (a high temp of 5 degrees!). Love and best wishes. Ann x

    Reply

  43. Joanne Hooton
    Feb 05, 2012 @ 08:01:29

    Good Luck with the ‘stuff’ Ellie, keeping everything crossed that it will work for you.
    Joanne in Adelaide. xxxxxx

    Reply

  44. Sandra Carlsso
    Feb 07, 2012 @ 02:46:14

    Hi Ellie!
    am new to posting on your blog but just had to after reading todays “Today Paper” in Singapore.. It has an article about a relapse Breast Cancer patient, Mdm Tan, who after “all clear” after five years had a recurrence at 6 years. she has HER2-positive breast cancer, that had also spread to liver..

    She is part of a double-blind trial conducted on 808 patients in 25 countries..

    In this study they use the conventional:
    Trastuzumab+Docetaxel chemo combo BUT adding Pertuzumab..

    The lady was added to the trial in 2009 (!!) and her cancer is in remission!

    The study is ongoing and called “CLEOPATRA”.

    Thought you should know in case it is useful to you!!

    Hugs and the best best best of fortune/luck/happiness/health and :LOVE!

    Sandra

    Reply

  45. Ellen
    Feb 09, 2012 @ 02:04:22

    Hi Ellie! I think of you all the time. Proof of that is that while reading a People Magazine with an article about Suzanne Somer, they described a situation when Suzanne was diagnosed with breast cancer 12 years ago. She declined chemotherapy in favor of a natural treatment using iscador, a mistletoe extract that some believe boost the immune system. You immediately came to mind! I still have not even finished reading the article yet,as I wanted to write and tell you about it in case you are not familiar with it. If there is any more information in this article I will forward it to you!
    With love from an Ellen to a Ellie!!

    By the way, my daughters name is Leigh, and my husband named our sailboat…..”Elleigh Bene

    Reply

  46. Ellen
    Feb 09, 2012 @ 03:12:05

    “Elleigh Bene Vita”. Which means “Ellen and Leigh (thus Elleigh) Good Life!” We will now add Ellie to our good life status!!!!

    Reply

  47. Hellevi
    Feb 09, 2012 @ 18:09:06

    Dear Ellie,
    I’ve been reading your blog ever since I read your article on DM. Thank you for sharing your life with us. I truly admire your strength and courage and I pray and hope along with everyone else that this new ‘stuff’ works!! :)
    Lots of love and hugs all the way from Estonia xxxxx

    Reply

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