Sharing our stories. - Sue’s story

 

Hi. I’m Sue. Back in July I found a very small breast lump, which the breast consultant was confident was just a fibrous thing. Needless to say, it turned out to be cancerous, and I’m now nearing the end of chemotherapy for Grade 3 Invasive Ductal Carcinoma and high grade DCIS (Ductal Carcinoma in Situ).

 

My diagnosis was presented to me on 13th August, a few days before my partner (Nick) and I were due to go on holiday. There was a temptation to cancel, so that any surgery wasn’t delayed, but I decided that we needed to have time together, then hit reality after we’d had time to get used to the idea of me having cancer.

 

A couple of weeks after the sunshine of Sardinia, I had my first op – a lumpectomy. The consultant explained that we were talking lumpectomy and radiotherapy, and not talking chemotherapy or mastectomy. Unfortunately, a clear margin was not achieved. At this point the word ’chemotherapy’ was used in passing. Four weeks after the first surgery, I was back to have further excision. Again, clear tissue was not found. Nick and I had taken the use of the word ‘chemotherapy’ seriously, and were prepared at the follow up appointment for it to be a possibility – if it was not needed we would have some good news. So when we were told that I would need chemo, we were quite calm. But we had not considered the need for a mastectomy after chemo.

 

Chemo started in November, and now I have one cycle left. Although there is much focus on the side effects and the drugs, there are additional hurdles that need negotiating along the way.

 

My wig! The wig rises up and makes me feel a like a Smurf. Just trying to get it on is really frustrating, but there are people to help. I called in to see the wig consultant who was able to explain the reason for my inability to wear my wig. I’ve been using the cold cap, to try to reduce hair loss. It seems to have worked to a reasonable extent, so I still have too much hair for my wig to fit, despite having lost probably 75% of my (previously very thick) hair.

 

You expect, and can see, head hair leaving you in a comb. But other body hair leaves you too. It was with some shock that I checked out our bed and saw just how much body hair was there. I ended up vacuuming the bed sheet! Recently, my eyes began to water and my eyelids swelled soon after my chemo drug changed. I was afraid that I was developing conjunctivitis (another side effect), but Nick told me that my eyelashes had fallen out. My eyebrows left at around the same time, and I began to feel quite down. Luckily, I’d booked myself into a ‘Look Good, Feel Better’ makeup session. I’ve never been big on makeup, but trying to draw on eyebrows with seven other ladies who had varying degrees of hair loss was like being at a teenage sleepover. I now draw on eyebrows every day – it helps with my facial expression and doesn’t make me feel like I have ‘chemo face’.

 

One thing that I’ve struggled with is that when I told people that I was going to have chemotherapy, many asked if I was going to go for a pink bob when I chose a wig. I know that it comes from a good place, and from the inevitable unease about receiving such news from a friend or colleague. I know that there are those who do seize the moment and choose a style that is way more adventurous than I ever would. But I know also that there are many like me who are being forced to deal with their new life as a cancer patient, who know that their appearance will change, both temporarily through hair loss and permanently through surgery, and who just want to return to normal. Each time I faced the pink wig comment, I inwardly screamed and outwardly smiled.

 

Having cancer comes, for me, with a sense of responsibility for those around me. Some friends have cried when I’ve spoken about cancer or the treatment. My Mum doesn’t live near us, and I know she struggles with not being around to check that I’m as well as I tell her I am. My siblings also live in different areas, so my phone minutes are challenged as we’re all making way more contact with each other than we did pre-cancer. Nick has to deal with me, as well as being overloaded at work. I encourage him to do the things he usually does – climbing, hashing, cycling on the moors, seeing his family. He needs to maintain a sense of self, and I know this is how he best deals with frustrations and upset.

 

I’ve been lucky. My health has always been good. I’ve had a couple of shoulder surgeries, and each time I could feel the benefits of the surgery and physiotherapy. My cancer is different. It’s the treatments – surgery and chemotherapy – that cause me pain and discomfort. I’m used to treatments bringing improvement, but this is the opposite. I quickly felt swamped by the lack of control I had, initially when trying to plan my work, knowing that I would be called by the breast and oncology teams. Nick and I have been talking about a summer holiday, but know that surgery and radiotherapy will be scheduled. We’re unsure of the implications of recovery, both physical and psychological. Answers are difficult to get as everyone is different. And I feel ungrateful for even the slightest moan because I know the good fortune I have in being treated by the NHS.

 

At Christmas, one of my colleagues sent me a ‘Braver Than I Knew’ t-shirt. I had entered the Braver Than community. I had an email conversation with Katrina and found myself opening up to her about the wig frustrations. I’d not said anything to any of my friends or to Nick – they are all supportive and loving, but I didn’t feel I could trouble them with something so trivial, so based in vanity, and something which is pretty confronting in terms of cancer.

 

I hadn’t thought that the complimentary therapies on offer were suitable for me – they were for people who were ‘proper poorly’. A few weeks ago, having endured an achy skull for the first week after each chemo, I made use of cranial sacral therapy at our local Macmillan sponsored Mustard Tree. The therapist asked me how I was. I spent the next 20 minutes weeping. My first cry. It felt good.

 

 

 

 

 

 


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  • Ali Deakins on

    Sue,
    You truly are an inspiration. Thank you for sharing your tough journey. Ever since I’ve known you (and it’s been about 40 years) you have always had a determination and positivity that I have always admired. You will get through this. Love you to bits. Sending hugs xxx🥰

  • Jo Hart on

    You are so inspirational and strong. Lots of love.xxx

  • Catherine Young on

    Dear Sue,
    I loved this. So honest and beautifully described.
    You are braver than…
    Get well .
    Sending love and hugs xxxx

  • Sarah Eckett on

    Oh Sue, we are so sorry you are going through this, we send you all the love, hugs and strong positive vibes to help boost your already amazing attitude and spirit. Take great care honey. Love Hugh and Sarah. X


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