D is for… Diagnosis – A Life-Changing Event

20 Nov

On 23 May 2011 I was told those terrifying and life-changing words – “you have cancer”. (Well, actually it was more along the lines of “you have an aggressive malignant invasive ductal carcinoma” – but it boiled down to the c-word). Having been promised for the previous couple of months that the swelling in my breast DEFINITELY WAS NOT cancer, I wasn’t prepared. I, myself, had begged for the biopsy just to put my mind at ease and, as such, was expecting them to tell me I was silly for having been so worried and to bugger off and not worry about it. However, as my consultant uttered those words (and all of the terrifying words detailing my diagnosis that followed), my world fell apart. I felt I had just been handed a slow, painful, undignified death sentence. My future, previously roughly mapped out, became a big black question mark. My hopes and dreams and plans for having a family were obliterated. I was scared of the treatment but knew the alternative was worse. I was also scared of the body-mutilating surgery. I suddenly had no choices or control over anything in my life. And I felt terribly guilty as I wasn’t the only one affected. Mr B, my family and friends were also going to be affected.

explosion-2

That was a Monday. The following 3 days were a whirlwind of scary appointments. An MRI to check the extent on the local spread. A CT scan to see if it had spread further which would have upgraded me to a terminal diagnosis. An appointment with a geneticist to start the ball rolling on whether I carried either of the BRCA genes. An appointment with a fertility expert to see if I could freeze embryos before commencing an aggressive dose dense chemo regime that would probably leave me infertile (I couldn’t – my tumour was too large, had spread to my lymph nodes and was fuelled by oestrogen). I was appointed an oncologist who said more scary words about my tumour like how “aggressive” and “serious” it was and told me my treatment plan. I visited the chemo ward and had bloods taken and my heart monitored in preparation for starting treatment. I just couldn’t believe that I was about to become part of the same world as these patients, no hair and hooked up to various drips and beeping machines. Then on Friday, just 4 days after I was diagnosed but what felt like an eternity due to all of the pokings, proddings, scans and appointments that had taken place since Monday, I had an operation to place a portacath under the skin in my chest and chemotherapy commenced.

For those of you going through this dreadful rollercoaster of emotions and endless hospital appointments, having been told those awful words, I totally feel for you. It is a terrifying and lonely place to be. However, you will slowly get your head round it and start feeling braver and stronger once you get a bit of control back in your life and start your treatment plan – that’s your chance to fight back. And the treatment is finite – there is an end in sight. Once the treatment is done life does feel good again! Different, but good. You will start hoping and planning and dreaming about your future again. Take that from someone who’s been there and done it!

If I could go back and give myself some advice for getting through it, it would be as follows:

1) DON’T GOOGLE. (Or read the Daily Mail!) So much of what you find on the internet is out of date, will end up scaring the cr*p out of you and, most importantly, could have been written by ANYONE. Stick to trusted sites such as Macmillan or Breast Cancer Care, try one of the many helplines run by trusted professionals such as Breast Cancer Care or call your breast care nurse or Macmillan nurse .

keep-calm-and-don-t-google-it

questions2) Keep a list of questions. My mind went blank every time I was with one of my consultants, so I kept a notepad constantly at hand to jot down queries that had been bothering me in the run up to my appointment. Sometimes a question would pop into my head in the middle of the night and I’m not sure I would have remembered them all through the emotional turmoil. I have found that many consultants are not very forthcoming with information unless you ask them – as many patients don’t actually want to know about their pathology or which drugs are being administered. I wanted to know EVERYTHING and wanted to understand EVERYTHING. I was probably a bit of a pain in the a*se, but it was what I needed in order to cope, and once I had a better understanding, knew the treatment plan and what was in store I felt much calmer and much more in control.

3) Deal with it in a way that suits YOU and YOUR circumstances. I needed to cry A LOT and talk A LOT but I found it very hard to spread the word as it was too difficult repeating and reliving the hospital appointments and what was said over and over again, so Mr B kept my family informed and Tennisgirl kept my close friends informed. I had less than a week from being diagnosed to starting chemo, at which point I battened down the hatches, hid away from the world and got on with it all. Some are very open about their diagnosis and treatment and keep running commentary on blogs and Facebook. Others (maybe with young children) don’t want anyone to know, don’t tell anyone, and do all they can to assume normality. There’s no right or wrong way to deal with it – you just have to deal with it in the way that is best for you.

4) Support is important. Previously I was a fiercely independent person, but the whole experience has softened me (in a good way) and I am now able to ask for help and support when I need it. If the tables were turned you would be there for your partner/friend/family member wouldn’t you? So make use of the offers of help and support when you need it.

5) Don’t be too fearful of chemo. I know the word is terrifying and the thought filled me with dread. But it is just a medicine that we are lucky to have to blast those chemo cells. It wont be as bad as you expect. I promise. See my post C is for… Chemo Shmemo.

6) Try to retain some normality in life. Do normal, everyday things so that you feel as though you still have some control over your life and to make the constant cancer stuff less all-consuming. Maybe some work, the school runs, walk the dog, see friends, redecorate a room…whatever works for you.

7) Be prepared. Take a leaf out of the scout manual and use the time after diagnosis to get prepared for your surgery and treatment. Small things such as visiting the dentist (you are not meant to go during treatment due to the risk of infection), clearing your diary of non-essential things, visiting the chemo ward(I found this really useful as knowing what to expect helped with my pre-chemo anxiety), or having a wig-fitting or ordering some scarves or buffs in preparation for hair loss. See my post P is for… Preparing Yourself for Treatment for other ideas. Anything to help you feel more prepared and more in control.

8) Remember, it’s YOUR body and YOUR life and YOU have some say in what happens to it. You need to feel happy that the surgery and treatment is the right one for you by understanding the reasons for it – not just right for the consultant. Everyone is entitled to a second opinion if you want one – either to reconfirm what you’ve been told by your assigned consultants or if you don’t feel very confident or comfortable with them or if they don’t carry out the procedures you want. I had quite a few opinions…! I had a second opinion with an oncologist who specialises in breast cancer in younger women who confirmed that the treatment plan my assigned oncologist had suggested would have been the one he would have prescribed. Jolly good. Felt confident about all of that after that appointment. Bring it on. But then I had a few second/third/fourth opinions with surgeons to find one that I was comfortable with and trusted (lost all confidence in my original surgeon after the months of misdiagnosis and the way he dealt with it once the diagnosis had been confirmed) and one who would do immediate reconstruction. Some surgeons specialise in the removal, but not the aesthetic plastic surgery side and will not do immediate reconstruction – which I was adamant that I wanted. – and others only do specific reconstruction and there might be other types that would me more suitable for you. In the end I transferred to a fantastic oncoplastic surgeon who gave me some fantastic brand new boobs at the same time as removing all of the bad stuff.

Katie Price at Selfridges

Well…not quite that big. (Sorry Mr B…)

9) Seek help if you need it. It’s a MASSIVE thing to have to deal with and affects so many areas of your life. Your mortality, your future, your family, your body confidence etc. It is enough to deal with even if you have a perfect life, but unfortunately most of us don’t and life doesn’t stop, so if things weren’t great beforehand, those issues will still be present, and other shit can hit the fan while you’re dealing with your cancer treatment. There is no shame in getting some help if you need it and don’t feel as though you’re coping very well. Most cancer hospitals and support centres (such as The Haven) offer free counselling, otherwise your GP will be able to refer you and discuss antidepressants with you to give you a helping hand through this difficult period.

friends10) Remember you are not alone. I was in a very isolated, lonely and scary place at the beginning, but slowly felt less alone as I met others going through the same thing. There are some fantastic support groups and forums out there. I went on the Breast Cancer Care Younger Women’s Forum a few weeks after I was diagnosed which was a godsend for me. There were fantastic seminars on issues such as fertility, reconstruction, nutrition etc, which were really useful – but most importantly for me I met some great girls my age, going through the same crappy thing and it was wonderful to make some friends who just “got it”. We could talk about everything – from the embarrassing side effects to the more morbid side of dealing with a life-threatening illness – which non-cancer people just feel a bit awkward discussing. If you click here you can see me in a video talking about my experience. I’m the one in the orange dress on the beach. I also signed up to the Breast Cancer Care Forum and met a couple of girls at my hospital and found it an invaluable support to be able to talk, share experiences and ask questions with others who understood what I was going through. I know some will be lifelong friends.

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4 Responses to “D is for… Diagnosis – A Life-Changing Event”

  1. Ruth Brajevich January 6, 2013 at 8:43 pm #

    What a gift you are providing in sharing your story with others. Prayers and blessings to you…

  2. insahmity January 9, 2013 at 3:06 pm #

    I’m amazed there were only a few short days between your diagnosis and treatment — wonderful, really, yet so little time for you to adjust. I had about a month from diagnosis to surgery, with lots of testing in between, and then another month until chemo, with more testing in between. I wished the process could have moved faster. Waiting for the unknown was very stressful.
    Thanks for writing the blog — I look forward to reading about your experiences and insights. Best wishes for your continued recovery-

    • chemo for beginners January 9, 2013 at 3:15 pm #

      @Ruth….thank you so much….x.

      @insahmity….I think it was because they had misdiagnosed me for months and months (despite having asked for a biopsy). You’re right though – in hindsight I’m glad treatment was chucked at me so quickly…waiting is the worst! Hope your second chemo goes OK. x

      • insahmity January 9, 2013 at 3:24 pm #

        You misdiagnosis — how horrible. I wish this were the first time I had heard that story from breast cancer patients. It’s too common, as is the “wait and see” line. I’m sorry you had to wait so long for proper treatment.
        Thanks for the good wishes, and take care-

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