This is the continuation of Lorraine’s powerful story of how she coped with the discovery of breast cancer and its subsequent treatment. You can read part 1 here.
Thursday June 6
I was told this would not be a painful operation but it is uncomfortable and I can only lie on my back so quickly get back ache. My urine is bright blue from the dye.
Friday June 7
I ring the consultant’s secretary to ask when I will be able to see her. She says the 17th as they need to wait for the lab to send back the results from the tumour and second lymph node. I freak out. I can’t wait that long and demand an earlier appointment, knowing there will be nothing to report.
Monday June 10
I see the consultant and she removes the dressing from my breast. She is pleased with the result and says it will ‘drop’. She can’t tell me anything except that she has seen an x-ray of the lump and is happy that she got a clear margin around the tumour. She tells me that there were ‘micro’ amounts of cancer in the sentinel node. We have to wait to find out if it had spread to the next node. Further surgery and chemotherapy are still a possibility.
Monday June 17
Waiting is messing with my head. The receptionists tell me I look pretty and have everything crossed for me. The consultant confirms she achieved a clear margin around the tumour and the second node is clear – no more surgery for me! The tumour is Grade 2. She has run my data through a database and I am marginal for chemotherapy. She is passing me on to the oncologist but wants me to have another test – a sophisticated and expensive gene test done in California which will give us more information on which to base the decision to have chemotherapy or not. She tells me not to Google and not to read The Daily Mail!
Tuesday June 18
I receive a letter from the consultant stating my results. By now I understand the group of letters and numbers without referring to the internet. According to the letter I am node negative. I am so happy. I speak to her secretary, who is becoming a friend. It seems my notes have “This lady likes to Google” written on them. We laugh about it and then imagine my tumour flying first class to California.
I see the oncologist. I feel he is sizing me up. I tell him I am node negative. “Not to me,” he says. “The cancer is in your first node which shows it is capable of travelling and setting up home elsewhere. This makes it dangerous.” He has run my details through another database and the results he gets are more inclined towards chemotherapy than the first one. I refuse to discuss it.
We do talk about the radiotherapy but it is futile as it takes place after chemo and could be a long way off. We discuss the tablets I will take. I produce a spread-sheet of comparative side-effects of the different tablets that I have Googled. I think he is impressed!
He will see me in a week with the results of the American test. A score of under 18 means no chemo, 31 and over means chemo, in between is deemed ‘patient’s choice’.
Wednesday July 3
I see my doctor first thing. She quizzes me about why I don’t want chemo. I don’t want to look ill, feel ill, have everybody know I’m ill, I tell her.
I see my oncologist in the afternoon. I feel sick. After a long preamble he tells me my score is 28. It’s under 31 – just! Even so my eyes fill with tears at such a high score but I choke them back.
He explains all the statistics and scores but all I can focus on is the number 28. He explains that this score means chemotherapy will increase my survival chances by an extra three per cent. It’s up to me whether I go ahead – he will support me either way. I ask him what he would advise his wife. “To make up her own mind,” he says, unhelpfully.
Three per cent is not enough for me. The oncologist has already second guessed my decision and booked me in for radiotherapy set up in two days’ time. “If you change your mind tomorrow we can cancel it and start chemotherapy. Six sessions, once every three weeks, followed by the radiotherapy,” he says. It will be Christmas when it’s over and I will be bald and sick.
That evening I try to explain the results to my husband. I don’t understand them.
Thursday July 4
I feel ecstatic that I have avoided chemotherapy but then have a meltdown and cry. Have I made the right decision? It all seems so rushed. I speak to one of the nurses and she tells me I must understand the results before making a decision. I ask the consultant’s secretary for a copy of the Californian test report. It seems they don’t usually give them to patients but she will check.
Friday July 5
The report arrives in the post and I pore over it with a highlighter pen. I meet my husband and we go to the (fourth) hospital for the radiotherapy set up. It is the same hospital where we had (unsuccessful) IVF more than 10 years ago.
The oncologist is waiting for us and takes us into a consulting room where he patiently goes through the results again for my husband. He understands and asks questions. We are happy with my decision.
I am whisked upstairs for a CT scan of my upper body. I have to lie on a board with my arms above my head and I start to lose sensation in my hands. The nurses do three pinprick tattoos on my body as reference points for the radiotherapy. They also draw on me in indelible pen. It will take a week to plan the treatment but the equipment is state of the art. I will have to travel to the hospital every day (except weekends) for three weeks.
I have been putting a lot of thought into my outfits recently and have felt a real need to look feminine since the operation. I decide to wear a different outfit every day as a challenge to myself.
w/e Friday 15 July
The weather has turned hot and I have a spectacular rash on my breasts! As I strip off for the first day of radiotherapy I warn the nurses not to be shocked by it – forgetting that I have a huge scar and no nipple!
The nurses are wonderful and the whole thing is painless and quick, once I am in position on the board, arms in stirrups above my head. There is no dignity in being ill.
My oncologist is on holiday for the week and I tell the nurses I feel neglected, like a petulant child. I apologise the following day and explain that they don’t realise how dependant you become on the specialists.
I collect the tablets I have to take daily for the next five years, possibly 10. They are from a family called aromatase inhibitors and stop oestrogen being produced in your body. The side effects are all the things that oestrogen stops – bone and joint pain, hot flushes, headaches, etc.
w/e Friday July 26
I see the oncologist at the end of the week and he refers me to a dermatologist as the ‘rash’ is on my face as well. It’s my old friend psoriasis.
w/e Friday August 2
Radiotherapy comes to an end and I am sorry to say goodbye to the nurses and the daily routine. They say they will miss seeing my outfits. I am warned by the oncologist that the side effects will peak after the treatment but I am already a bit ‘pink’ where the radiotherapy beam has been. I have to apply creams and keep out of the sun.
w/e Friday August 9
I see my doctor for more tablets. I am feeling very low but she says it’s only natural. My husband and I book a holiday in the south of France, flying out on the 29th.
Saturday August 24
My left breast is still lumpy and sensitive as the radiotherapy has stalled the healing process. I check my right breast and am horrified to find a lump. I don’t tell anybody, including my husband, as I think I am becoming paranoid.
Wednesday August 28
I have a check-up with my oncologist. The soreness, which peaked 10 days after the radiotherapy is now better, and the stabbing pains in my chest, are all normal. The circle of skin standing in for a nipple is grey. It’s not dead – it’s the blue dye! He tells me I can wear an underwired bra again.
I ask him to check my right breast and he can feel a lump as well. He wants me to see the surgeon for an ultrasound but I am on holiday in France for a week. I tell my husband.
Monday September 9
After a lovely week in France, where we try not to worry, I see the surgeon. She examines me. The lump is a cyst.
A note from Sylvia: A big thank you to Lorraine for sharing this moving story. I truly hope that you will make a full recovery and that you can put this behind you real soon. For everyone else, please make sure that you do your personal checks in addition to your mammograms. As you all know it’s crucial that you discover breast cancer early. If you want to share your own experience or have additional information, feel free to share your comments below.