Five Years Ago….

1Five years ago today I was diagnosed with breast cancer. The diagnosis led to seven major operations, one minor operation and five years of endocrine treatment – none of which has been particularly fun. The most important point is that I am alive and everyday I am pleased about this. I hope by this October I will finish my treatment and be able to completely move on from this part of my life – I certainly feel ready to. Before I do this I will over the next few months write a little about the treatment I had, my experiences, and how having cancer affected my life, just in case it may be of use to people going through something similar. One of the hardest things I found about dealing with the whole process is that I didn’t have much information about what was happening except in very general terms. A lot of what was available was aimed at women older than myself, or people in a slightly different situation and I found it hard to get clear information about treatment choices, and reconstruction options. Of course feel free to skip over the cancer stuff and move straight on to more tales of cabbages, camping and chaos – I won’t mind at all.

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Felixstow Ferry – James and I walked from here to Felixstow a few days before my first operation

During my treatment I was lucky enough to have some wonderful surgeons. I also encountered many lovely, competent, kind people in hospital who made my treatment much more bearable. However, I was also unlucky enough to have some completely unacceptable experiences in hospital (often repeatedly) and to encounter some ignorant, careless, and unprofessional people.

Today I want to write about three brief stories which have changed the way I now approach issues with my health and my interactions with the health care system:

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I found a lump in my left breast while watching West Wing on a Monday evening in early June. Straight away I feared something wasn’t right and I managed to get an appointment with the doctor (GP) two days later.  I told the GP about the lump and she took a look. She told me women my age get lumps in their breast and there was nothing to worry about and I should go home. I told her my mum had died of breast cancer and I wanted it checked out. She told me it wasn’t cancer and I should go home. At that moment I knew what my mum would want me to do so I insisted that she refer me to hospital. I tried to be firm and stand up for myself – I may have cried just a little. I will never forget what she said to me – she told me she would refer me but she would specifically say that it was not urgent as she didn’t think it was cancer and she would not request that I be seen in the two-week window for serious cases. I was diagnosed with invasive breast cancer a month later.

Me, just after I was diagnosed - still in the phrase where I was convinced I was going to die!

Me, just after I was diagnosed – still in the phrase where I was convinced I was going to die, but trying to look cheerful

A few weeks after my first mastectomy I was back in the hospital breast clinic for a check up. You have to fill in forms so they can assess whether your cancer might be genetic.  I asked the breast nurse if I could have the test to see if my cancer was genetic, after all my mum had died of breast cancer in her very early fifties and I had been diagnosed in my late thirties – both indicate a possibility of a genetic link. I was told that my beast cancer was not genetic, that not enough people in my immediate family had died of breast cancer: that myself, my mum,  my mum’s grandma and a cousin of my mum had had breast cancer was apparently not enough. I said I wanted the test, I tried to stand firm. As I left the clinic the nurse ran after me and said I could have the test, but she knew it wouldn’t be genetic. Five months later I was diagnosed with the genetic mutation BRCA2 which is one of the hereditary breast-ovarian cancer syndromes

IMG_0059My fifth operation was a bilateral latissimus dorsi breast reconstruction. They take your latissimus dorsi muscles and flip them round and make new breasts for you which is fine unless you are very skinny and don’t really have much in the way of latissimus dorsi muscle which  I don’t! It was a 7-8 hour operation and I had to stay in hospital for 6 or so days. I had four drains in me: two in my chest and two in my back. Standard procedure at the hospital where I had most of my treatment is that drains are only removed once the output is less than 30ml. I had already had two separate mastectomies, and another operation to insert expanders to stretch my skin in preparation for the reconstruction all of which necessitated drains, and I had picked up this information from conversations between doctors and nurses. I had already been in hospital for 6 days when the ward doctor came round. They were keen to discharge me, but policy at the hospital is to only discharge patients when they have had their drains removed. The doctor told the nurse to remove three of my drains, but one of them was still draining at least 70-80ml. I should have said something, I knew this wasn’t right. But surely they knew what they were doing? I trusted in their competence and experience rather than having faith in myself and my knowledge. I didn’t stand firm, I didn’t say what I wanted to happen, which was for the drain to be left in. I was left with a large seroma on my back which I am pretty sure was the result of the fluid not being allowed to drain. After a number of months this became infected and I had to have another quite extensive operation to deal with it.

Field behind our house

Field behind our house where I walked everyday during my recovery.

From these experiences I have learned to be an active, informed patient and to take responsibility for my own health. There are many great doctors and nurses, but there are also foolish, ignorant ones – and mistakes get made. I am sure the GP didn’t like the fact that I queried her assessment, and politely but firmly stated what I wanted. I don’t like to make a fuss, but I have learned that you have to stand up for yourself where your health is concerned. It is OK to double-check decisions, it is OK to ask for explanations, it is OK to query the prescription of particular drugs, it is OK to ask for further tests, it is OK to ask for the pain medication that you know works, it is OK  to not blindly accept the decisions of doctors or nurses.

There is a strange attitude surrounding medicine. There is an idea that doctors are infallible, that we should not challenge or query their judgements, that they always know best. As I said above I have met some fantastic doctors who are professional, kind, experienced and knowledgeable. However, in the past five years I have also encountered shocking ignorance and incompetence on the part of members of the medical profession, many of whom also display an arrogant, dismissive, and condescending attitude. Don’t rely on what your doctors say – become informed, ask for explanations, do your research, and if it doesn’t seem right, say so – it may save your life.

Me and James a couple of days after my first mastectomy

Me and James a couple of days after my first mastectomy

N.B. I have a PhD and so in theory my title is Dr although I generally use Ms as this works well enough. After a few months of being patronised and talked down to by medical staff, or being talked about while I was in the room, I changed the title on my medical records to Dr and immediately there was a shift in the attitude of the medical practitioners that I met. Instead of the condescension and arrogance, there was a degree of respect and it was assumed that I could interact intelligently on the subject of my illness and treatment options. Personally I think that we should all be treated with respect and it should be assumed that we are all competent and capable of understanding our illnesses and treatment options regardless of the qualifications that we have.

N.B. I have also realised you often need someone with you in hospital: someone to come to important consultations with you as it is very hard to take in information when you are in shock, and someone to be there after an operation to make sure you have pain relief, water and food (and help to go to the toilet) – there is no guarantee when you come round from an operation that any of these things will be provided for you. If you know someone who has to go into hospital and they don’t have family or friends nearby, go with them, they will appreciate it.

17 responses to “Five Years Ago….

  1. Thank you so much for sharing your story and I am so very happy that you are here. My Aunt passed over of breast cancer and in memory of her, I have started my food blog as we used to cook together. Your story made me so happy that you’re a survivor 🙂

  2. Congratulations on reaching this milestone. I remember exactly where I was when you told me of your diagnosis. In the car park of the doctors having just been in with Holly for a reason I can’t remember but nothing serious. I am glad you are still here and now very healthy – here’s to the next 5 years and the next 5 after that (and so on….). Xxxx

  3. Thank you so much for telling this story today especially as Rita begins her chemo. After years of being ill and not being able to get diagnoses and the help needed to feel better I, too, know of the condescension, the dismissing my opinions and thoughts by medical professionals. Didn’t have the Dr. piece to add but getting angry or hysterical can mobllize some practitioners. And so this is what I use. I shudder at all you have gone through having to learn as you go along and yet I am so grateful for your strength, your commitment to yourself and to your life and health, and I feel the inspiration of your story. I very much look forward to more of the story. I feel quite moved by what you have experienced and by your willingness to share it all with us. Much love and gratitude, dear Claire.

    • Yes please. I have been thinking of you both and wondering how you are over the past year – I can’t believe time has flown by so quickly. I will email xxx

  4. I met this lovely woman just over 5 years ago (I think…), Claire, you are a bloody star, you and James have become our very good friends and we have seen you so much while you were going through most of this. You have handled it so brilliantly!! We love you both! We must celebrate something very soon!l

    (PS, my original reply suggested that we had nursed you through this, purely a language thing, my amended version looks like it has been through Google translate at least 3 times!).

    • Yes, let’s celebrate something soon. We are so lucky that you and Alfie choose to come and stay on our site rather than some other one as then we might never have met, which is a terrible thought! xxxx

  5. Amazing, inspiration and moving. Thank you for sharing and confirming to me that it is ok to ask and question health professionals. Myself and family have met you and thought you where lovely. stay that way.
    May you enjoy many years of great health. xx

  6. Congrats Claire! I, too, am glad you made it. Well done for all you’ve endured and come through: a real inspiration to us all.
    Oh, and I concur, good advice on the medical side. I might put some letters & numbers in front of my name 😉

    I hadn’t realised our anniversaries were so close – June 28th was 10 years for me!!! Hmmmm… What a hike, huh.
    Thanks for sharing.
    xx

    • Congratulations to you too – I am glad you made it as well. Your journey has been far harder than mine and I have so much admiration for the way you deal with everything. Let’s both keep on getting and staying well. x

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