I had breast cancer

Recovering – easier said than done!

In May 2009 Nick and I were thirty three, our daughter Alice was a boisterous 2 year old, Thomas our second child was 7 months old, and I had just finished breast-feeding him.  In checking my breasts for milk I noticed some blood, rather than milk, being produced. A quick phone-call to an obstetrician friend confirmed that I should talk to my GP sooner rather than later. A quick skim of a couple of medical internet sites showed many reasons for a blood discharge. ‘Symptom of breast cancer’ came at the end of the list, a real outsider.  However over the next couple of weeks mentions of breast cancer seemed to jump out at me and our concern grew.

On  18th May 2009 I saw my really good GP in Hampton Hill,  she referred me for relevant tests as she was not sure what to make of it herself. There was no apparent lump but there was an area of marginal tenderness.

Between then and 5th August 2009 I saw a local consultant for examination and blood samples, had ultrasound scans, mammogram, MRI scan, three sets of increasingly invasive biopsies, initially using needles and latterly a taking a core sample using a huge machine that made a sound like a shot.  We felt frustrated by each test proving inconclusive, until the final biopsy.

On 10th August 2009 I spoke to consultant on phone, he wanted to make an appointment to report my results.  I’d had enough of waiting so requested that he tell me there and then.  A diagnosis had been made; it was widespread DCIS (Ductal Carcinoma in Situ, which is pre-cancerous cells), in my right breast. The consultant recommended a full mastectomy of that side. This was the first mention of a mastectomy in relation to me. I had always thought there would need to be some surgery but thought it would be a lumpectomy, and had worried about how the small void left by the removal of a lump would be filled.

I was shocked and was very quiet.  I hung up and went downstairs to see my close friend Amy, who with wonderful intuition had not gone home after our supper together but had waited.  I couldn’t tell Amy what had been said, I couldn’t process it or voice it.  Eventually I was able to tell her the news.  She said just the right thing: ‘that’s a biggie.’  After a while I called Nick, who was in South America for work, in a taxi between meetings.  I was so lucky to catch him as I couldn’t have waited.  I can’t remember the conversation exactly, but I know he said that losing my breast would not make any difference to how he felt for me.  He too said exactly what I needed.

The next day I had to go to the passport office in London.  As I left the office, on the stair-well I suddenly felt I needed to speak to my GP, called the receptionist, and broke down as I tried to tell her why I needed to speak to the doctor.  That was the only time I cried, until months after the operation.

So I was finally able to tell my family and friends who had been so caring and supportive, what my results were; being able to say that the cells were pre-cancerous rather than invasive was an important coping strategy for us all.

However  my family had encouraged me to seek a second opinion from a breast cancer specialist and on 18th August 2009 we heard that their review of the case and further analysis of tests showed that there was invasive cancer amongst the DCIS.  This was hard to hear.  Nick broke down, I felt numb.  But I felt strong enough to deal with it and we got on with it together.  It was all at very early stages so we had the best chance of fixing it.

19th August: Saw the oncologist

20th August: CT scan to check if the cancer had travelled anywhere else – it hadn’t.  Saw the breast surgeon at the Royal Marsden.  Mastectomy planned for 10 Sept.

In between the above two appointments I had the honour of popping into the Chelsea and Westminster for a fantastic treat – to meet little Felix Vafadari born earlier that day, to my lifelong friend  Zoe and Justin.  Zoe was in bed but already had her red lipstick on!  It made my day.

26th August: Saw my plastic surgeon at the Marsden and met a breast care nurse.  Agreed on DIEP type reconstruction after the breast tissue removal.  A DIEP flap is when the blood vessels called deep inferior epigastric perforators (DIEP), and the skin and fat connected to them are removed from the lower abdomen (still fat after having Alice and Thomas, luckily). They are transferred to the chest where they are joined and shaped under my preserved breast skin using microsurgery .  A breast would therefore be created which was ‘living’ (as long as the blood vessels transplanted successfully), but that would have no feeling.
We started reading a book called ‘Mummy’s Lump’ written especially for young children, with Alice. She was amazing, took it all in and digested all the new words. ‘Anaesthetic’ was a bit challenging!

Date of surgery changed to 24th September, due to availability of the surgeons’ preferred anaesthetist.  This was fine but took some dealing with – I had geared myself and my family and helpers all towards 10th September for the start of ‘The Rota’ to look after me and the kids and the dog.  Now we had a stressful extra fortnight to wait and a new rota to sort out.

16th September: Ultrasound of the lymph nodes to check whether the cancer had entered my lymphatic system. It had not. Phew.

21 September: CT scan of abdomen to ‘map’ the veins and arteries that would be taken out for the reconstruction.

22nd September: took a photo of my boobs!

23rd September: Sentinel lymph node scan – further check.  Radioactive injection to highlight lymph nodes to be removed.  Checked in to hospital, then went for a lovely walk in Regents Park with Nick.

24th September: day of surgery.  The surgical team came to my room and took me down to theatre where I was wrapped up and insulated,  to maintain my body temperature whist under anaesthetic.   I felt like I was going in to be butchered.  I was under general anaesthetic for 11 hours whilst the breast surgeon removed every last scrap of breast tissue including my nipple, and the plastic surgeon then cut  the blood vessels, skin and  fat from my abdomen and did an incredible job of reconstructing my breast.  When I came round Nick was there.  I was ‘sitting’ huddled up on a tilting bed with my knees pushed up to prevent any pulling on my rejoined abdomen, which had been opened from one hip across to the other.  I was struggling to maintain my consciousness and kept stopping breathing.  When I was reminded to breathe I was taking 5 breaths per minute.  I was horribly sweltering hot but apparently my body temperature was extremely low. I was under a foil duvet and there was a hot air pump blowing heat into it. It was dark.  I was so thirsty, but I wasn’t allowed a drink of water. I was given tiny pink sponges on the end of a stick soaked in water to suck on which really didn’t help.  I didn’t really know where I was, couldn’t register what was around me and felt as though I couldn’t keep going.  It was horrible.  Hours went by and Nick was sent out to the pub for a necessary drink. My nurse stayed by me, she was like an angel.

The next day I was allowed to come out of the foil and eventually was moved to sit in a chair propped up with loads of pillows, and taking my 4 drains (long plastic tubing to take away excess body fluid being produced at the wound sites) and catheter with me. Luckily I was in the chair when Mum arrived. I saw her walk in the door, see me and turn and go into the bathroom to compose herself.  I knew that if it had been humanly possible, both she or Dad would have swapped places with me without a second thought.  She sat with me for a while until I couldn’t keep my eyes open any more. It wasn’t very long. About 5 minutes.

I was moved the next day to my own room where I spent the next 5 days.  I wanted to do as much as I could myself.  A big achievement initially was moving my upper body and arms so that I could  have some food;  in subsequent days this progressed to moving myself and my 4 carrier bags containing the drains off the bed, using various bars and handles, without yanking the tubes where they entered my body, and getting into the bathroom to wash.  Due to not stretching the wound site across my waist I could only sit upright, 24 hours a day, with my thighs at ninety degrees to my body, which became a bit of a torture.

When I stood up it stretched my legs but I still had to bend forwards. I felt about 100 years old and had a very achy bottom!  The vital blood supply to my reconstruction was checked every 4 hours and was doing well.  It was all strapped in to keep the microsurgery in place and I would not be able to see the results of the surgery till it was all healed.  It was very swollen for weeks.

I had family and friends come to visit, keeping my spirits up and a smile on my face.  The best was when Nick brought Alice and Thomas in on day five – I lost count of how many times they rode up and down on the electric bed!  I remember thinking I didn’t know that I could go through all this again if the cancer ever came back. I was petrified of coughing or sneezing and had to brace myself to laugh, as I felt as though everything could just split right open.

Sooner rather than later (I think on day 5) the drains and the catheter came out – the nurses and my surgeon knew I was desperate to be home for 30th September, my gorgeous Thomas’s first birthday.  In the end they let me out, hobbling down the street at snail’s pace supported by Nick, on the afternoon of September 29th – just in time to organise Thomas’s party!  I was so, so happy to be home.

While I was in hospital the rota we had organised for people looking after the children, keeping the cooking and washing ticking over, walking the dog and visiting me kicked in our little terraced house. As well as our parents we paid a daily helper, and had friends filling in the gaps.  Everyone was so generous with their time. I hated being the one having to ask for help and not being able to look after my children. Thomas was too young to have much awareness of the events, but Alice knew what was happening, and I couldn’t have asked for a more supportive almost-three year old.  She found some things hard, but in true Alice style got on with it all with gusto.

I was on great big doses of painkillers (interestingly the same ones James Cracknell took at the end of their Atlantic crossing!), antibiotics, and a couple of other things.  I had to set myself up with pillows each time I went to bed to keep my abdomen in the right position, so it was hard to sleep and I longed and longed to lie down flat.  I walked with a heavy stoop for the same reason, but was able to get out of the house within a few days of being home.  I was really proud the first day I was able to go and pick up Alice from nursery – with helper as I could not lift or push a buggy.

It must have been about 6 weeks before I was able to be at home for short periods without help, and another month until I could stand up straight and could lie down flat. It felt fantastic! We had been due to go to Australia to visit Nick’s brother in the November.  I had tried to think around the issues to enable us to go ahead with the trip. Thank goodness I had enough people saying ‘don’t be stupid!’ that we postponed it!

The results from analysis of all the removed tissue show clear margins around all the edges, which meant there was no risk of anything cancerous remaining.  I was ‘oestrogen-receptor negative’ (the cancer did not depend on oestrogen to grow) which meant no point in taking hormone drugs such as Tamoxifen.  As the whole cancerous area had been removed, I did not need chemotherapy or radiotherapy.  Thank goodness.  The likelihood of the cancer recurring in the other breast is significantly higher than someone with no history of cancer – I think I was advised about 1 in 5 chance – but I don’t think about the statistics very much.  I had had no risk factors – no family history of breast cancer, I had breast fed both children for over 6 months, and lived a pretty healthy lifestyle.  It’s just the way it was.

On 23rd December I saw my surgeons again, and got the all clear.

I then had further surgery to create a nipple from the skin taken from my abdomen which patched over the hole.  The tattooing of colour onto it has not really worked.  My plastic surgeon was extremely talented, and said mine was the best one he’d done in terms of its likeness to the original.  I wish I had sensation in it, and I don’t feel it’s really part of me; I still can’t feel sections of my tummy and have a scar from hip to hip, and a relocated tummy button. But I know he’s done an amazing job and I know that for so very many reasons, my experience was a very, very lucky one.

I was 33 when this happened, I had already been happily married for 8 years to a fantastic man, and I had two amazing children both of whom I’d had the chance to breast feed.  All these factors helped me to cope. The truth though, in terms of body image and confidence, is that I am only just becoming really accepting of it.

I wonder a lot about how I would have coped if I was younger, hadn’t yet found a partner, hadn’t yet had children, or still wanted to have more children.  To me I couldn’t have been luckier in the way this happened to me. But looking forward to friends and family who might be faced with this in the future – I don’t want them to have to cope with it.  I want them to be able to avoid it, for it to be preventable.  No parent would want to see their daughter (or son) to go through this, or worse.

I clearly remember showing my Mum the results of my reconstruction, in her bedroom at our family home.  She was relieved at how well it had been done, and, when I suggested it, she was able to call to my Dad, and tell him ‘it’s OK Pete; it’s fine, come and see’.  I don’t think he’d thought he could bear to look.  I felt so very sorry that I had put my parents and family through so much pain.

4 Responses to I had breast cancer

  1. Richard Blowers says:

    So glad that you came through ,thank you for telling your story , ..
    I saw the boat being towed on Sunday and googled the names to read about the project,…I lost a brother to kidney cancer and my sister has been through breast cancer and is fighting fit again, …thank God for the people that work in that field,
    Will keep an eye on the project and if I can raise any funds I will do!
    Regards
    Richard

    • Ellen Rees says:

      Thank you Richard. A big part of this is sharing an understanding of the effects of cancer; it is really helpful to us to have support from the people who have already been affected by this disease, and your words will certainly spur Nick and Ed on when they face the challenge that is underlying all our fundraising. Keep your eye on our events and do come along to something if in the right area for you – we’d love to meet you.
      All the best to you and your family, and our condolences for the loss of your brother.
      Yours
      Ellen

  2. jan armstrong says:

    thank you for sharing your story Ellen. I have been following the Breakthrough Atlantic news for the last few months as know many mums from Rowledge as my 6 YO went to the pre school in the village hall. I am a St Peters mum. I have seen the events and news on FB and what Nick & Ed are doig is truly amazing. . I have two close friends who were diagnosed in their 30′s with breast cancer ..believe it or not , they were both diagnosed in the same month Feb 2011 and both had 2 children under 5 to cope with along with the illness. Two years on, they are doing well but your story of the recovery, particularly the soreness, the emotions..oh and the draining of the fluid – well, you have told it so brilliantly. I hope to make one of the fundraising events at some point this year – hopefully the 8th August fun in the sun event and if you are there, will come over and say hello. Take care and keep well x

    • Ellen says:

      What a lovely message to receive – thank you Jan. I’m sorry to hear about both your friends’ ordeals. Every time I hear another account of someone close to home having to deal with this disease it makes it clear how important the fundraising is. Thank you for your support! I will certainly be there on 8th August, and would love to meet you so please do come and introduce yourself. If you would like some tickets please do get in touch or there should be someone selling them to St Peters parents too in due course.
      Nick and Ed are doing such a good thing, but it wouldn’t work at all if it wasn’t for all the amazing people who are cheering them on. Thank you.
      Very best wishes to you and your friends, Ellen.x

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