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Earlier this year, Dr Rachel Harris, the Society’s professional and education manager, was diagnosed with breast cancer. She reflects on the transition from being someone trained to care for people who have cancer to being a patient.
#Hellomynameis Rachel Harris. I’m a therapeutic radiographer by background and since I was 18 years old I have been involved in cancer care. My own cancer story started in mid-April.
I’d been feeling tired for some time, but the first clue that something was really wrong was when my dog, Poppy, wanted to lay with her head on my right breast. She kept looking at me with deep, sad eyes. I thought something was wrong with her! The second clue: I rolled over in bed one night on to my right side and felt a sharp pain like there was a prickle in there. I felt my breast and there was a hard lump.
I left it for a few days to ponder. I didn’t say anything to anyone. I didn’t want to scare them. Then fate gave me a kick up the behind: a letter from the breast screening service arrived. Fifty-one years old and my first appointment had come through. I told my family it was routine, which it was. I wasn’t really fibbing at this stage, was I?
The mammographers were lovely and they asked me a few questions. One was “Are you worried about any lumps?” Ah, well, time to fess up. From this day on, ‘hospital life’ has taken over. ‘Normal’ life has been non-existent.
Can I turn up tomorrow for a repeat mammogram? Blimey, so they have seen what I can feel. Still might be nothing though, right? It could just be a cyst or a benign lump?
The radiographer is lovely and uses #hellomynameis. We both look at the earlier mammogram. She takes another and, yes, it’s still there. Then I get called through to see two amazing radiographers who do an ultrasound. I ask M, who is an advanced practitioner, if she thinks its cancer? How unfair was that? Sorry, M. She was great though and said off the record she felt there was an 80% chance that it was.
Six core biopsies later and M is running down the corridor to the lab. (Ouch, my boob hurts now!)
The bomb is about to go off. One of the most difficult parts about this whole thing is deciding when to let family and friends know. A few white lies have to be told to cover up hospital appointments until I feel the time is right. Their support is going to be invaluable, but I don’t want to hurt or worry them.
I ask the breast surgeon to give it to me straight. I have invasive breast cancer and will need surgery. She recommends a wide local excision followed by radiotherapy, hormonal therapy and possible chemotherapy. (We briefly talked about a double mastectomy, but I didn’t consider it seriously. A decision I have since regretted.)
It’s a mucinous carcinoma of the breast, sometimes called colloid carcinoma, a rare form of invasive carcinoma. The tumour is made up of abnormal cells that float in pools of mucin. My medical history includes a pituitary benign tumour when I was 23. It affected my fertility and two cycles of IVF followed. An emergency hysterectomy at 38 and last year an under-active thyroid was diagnosed. The tumour has been feeding off my hormones for years.
The good news: these tumours tend to be less aggressive and don’t spread quickly.
The bad news: they tend to ‘hunt in packs’, so I may have more than one to look forward to. And just as I’m leaving and going through the door, “Oh, and by the way, you need to crash off your HRT.” This should be interesting!
I’ve never felt so alone in all my life. People are sending me lovely cards and beautiful messages of support. I do feel loved. But I do feel dreadfully alone. It is hitting me hard now. I am determined to keep life as normal as possible, especially trough events coming up such as my mum’s birthday and our wedding anniversary.
At times it’s hard to believe this is real and that I have cancer.
The day before my breast surgery. I’ve cleaned the house twice. I’ve coloured my hair so that I look vaguely decent. I don’t want people seeing me on a hospital trolley with grey roots. I’ve been watching tweets of my friends and colleagues arriving at UKRC; it makes me feel sad and alone. I desperately need a G&T now but can’t have one.
This is D-Day. Trevor and I leave home at six to be on the ward for 7am. This is going to be a long day. You’ve got to get on with this, girl. They send me for location of the tumour via ultrasound. Then to nuclear medicine to locate the sentinel node. It involves an injection of blue dye into the nipple. I’m told it will feel like a bee sting. Yep, that’s a good summing up!
Post-surgery, I wake following a wide local excision and sentinel node biopsy. It feels like I’ve done a few rounds with Muhammad Ali as he left this world. What a night and losing some blood.
I have to go back to hospital today to get a large haematoma checked out. I have two options: go back to theatre, have drains put in and the wound cleaned out, or watch and wait. The latter sounds good to me! (This is another decision I would later deeply regret.)
Do I think cancer is now normal? Yes, I guess it is when we are treating it, but for those of us going through it, this is not normal at all. I am an individual with my own life journey and one size does not fit all.
I need a full diagnosis to know where we go next and if my lymph is affected. I am scared about chemotherapy.
My wound broke open yesterday and is bleeding quite badly and is very sore. Life is shit right now.
Rachel receives good news: the lymph nodes are unaffected and there is no need for chemotherapy. The next stage is radiotherapy and hormonal treatment. However, her wound deteriorates. A solid haematoma is diagnosed and Rachel is given a surgical drain (which she nicknames Carrie, in honour of Stephen King’s book of the same name.)
Surgery number two today to sort out the haematoma. A nurse says I’m not on the list. There is a J Harris. That’s me! “No, it’s not you,” she says. “You are R Harris.” Yes, I know who I am! I don’t care if it’s J Harris, I’m having the slot. I can feel myself getting tearful. After ten minutes of panic, all becomes clear. Someone wrote the wrong initial on the board.
I see the anaesthetist and she can’t believe how keen I am to get to theatre. She has never seen someone virtually run in the room before! It’s time to get this haematoma out and for me to get healing because I can’t start my radiotherapy until this is better.
A Jehovah’s Witness came to the door with a leaflet, ‘How do you view the future?’ We had an interesting debate.
Night sweats. I am on menopause number three now because I am no longer taking HRT (the first one was when I was 38 after my hysterectomy, number two was when I was 45). One in a lifetime is enough.
I do believe the bleeding has stopped. I had a phone call from the hospital to cancel my follow-up appointment with the surgeon. I told them I will be at radiotherapy planning next Wednesday come what may! I need to get my life back.
Radiotherapy planning goes well, but whilst I feel we have come a long way with treatment, on tattoos we need to reassess. We still use black ink to permanently mark our patients. I have three permanent marks on my skin. Does this matter in the grand scheme of things because I am having critical cancer treatment to save/prolong my life? Yes, it does actually. I have one breast that is very battered. I want to keep as much control as I can over the rest of my body and I want to maintain the bits of me that I can.
One of my earliest papers discussed body image and breast cancer. Here I am, many years later, going through the journey. I start as discussion with the breast radiotherapy special interest group, saying “We need to assess options and we need to share ideas.”
Rachel started radiotherapy on 12 September. Immediately before treatment started she said: “It will be strange to be on the ‘other side’ of the linac.”
She has now finished treatment and will write a second diary about her experiences as a radiotherapy patient.