Lyn originally wrote her story (see below) in 2002. She updated her story for us in 2007:
Lyn's Story 5 years down the track ... age 63
The road travelled has sometimes been rocky though I have gained so much in these years. I'm back in the big smoke, not in a relationship, which I'm happy about. I developed secondaries in lungs, spine, ribs and a few bits in between in 2005.
The best part of these years is the wonderful support and encouragement I get from my daughter son in law and 2 wonderful grandkids. I have responded well to treatments with Femara daily and Zometa IV each month at the local hospital Oncology unit. Today I had my 6th bone scan and the beastie has not involved any more bony bits. (Still in my lumbar spine) I have a porto-cath, (rotten veins) a medical term for impossible veins, and I take MS Contin 3 times daily for joint pain.
It hasn't been a walk in the park but I foresee many years ahead: I have absolute faith in my medical team, love and encouragement from my family. Though I think my granddaughter, Lily age 4, sees me as a bit simple, when I baby-sit for her and Miles age 7. She leads me here and there with 'come on Nanny this is your bed'. I think it's the white hair. Living with secondary breast cancer certainly has cleared my focus on who I am and have I made a difference in my life and work. That is a lesson I am still learning though ever so gently. 'I'm OK and I dun good'.
November 2007
Lyn's story from 2002
It's 12 months ago since I received the letter from BreastScreen for a follow up examination after a problem was detected in my routine mammogram. I've been a registered nurse for 40 years. I have seen success and failure in the ongoing medical battle against all sorts of cancers and life threatening diseases. I tend to have a fatalistic view about when we die. I have always believed that when my number comes up that's it. Not negotiable. Finite. Caput. Fini. Having said that, it shook me up having to go for a more detailed examination, though I did not really consider breast cancer. I've had poly cystic breasts since the 1970s. You know, needle aspirations, removal of cysts, mammograms, and ultrasounds. There are very few procedures my boobs and I had not gone through. Or so I thought!
When I phoned my partner about the call back, Ruthie, (yes we are gay) cried and cried on the phone, I seemed to be doing the consoling and looking at the brighter side. Ruthie's mum had breast cancer about six years ago. She is doing well and is a survivor. I had spoken to my daughter in Sydney, and my cousin Jan. My daughter and I do not enjoy a close relationship. This news did nothing to help that. Her reaction was hostile then and always has been, if I'm not well. My cousin Jan was wonderful and offered use of her blood if needed.
I had just started a new job in the public hospital system and was full of ideas about my new post. On Tuesday of the following week, off we went to the BreastScreen Clinic at Bulli Hospital. I felt nervous and my anxious thoughts ranged from, disbelief - a technical problem with the original films (I wish) and practically being near death in the hospice. Ruthie and I sat in the waiting room in the clinic, having reported to the reception and picked through the stack of assorted magazines. We had coffee or tea as well as biscuits. The staff were all very professional and efficient, I felt secure and confident that they would have the answers to my mystery. I can read medical and nursing staff pretty well by now. It's not so much what they do say as what they DON'T say. I've been in their shoes too many times not to recognise the body language and interactions. There would have been about 20 women through the clinic that morning. After their examination they got dressed and left. After my repeat mammography, I went back to wait!!! NOT GOOD. We were called in to see the nurse counsellor who explained that there was a problem on my films that indicated a tumour. I was to have a biopsy done under ultrasound control that would be sent to pathology and the results to my GP by the end of the week. When I was having the ultrasound biopsy, I asked the doctor what the tumour was, I'm not the sort of person to be kept in the dark. She confirmed my thoughts. It was cancer and about 15mm in size. From then on I felt somewhat relieved that I knew and then began planning how to get rid of the rotten beast.
Ruthie and I were in a daze on the long drive home. It really felt unbelievable. I felt well, felt no lumps even when I knew exactly where it was. I started planning every step of the surgical intervention that would remove this alien from my body. I wanted it done A.S.A.P. My mind and body went into overdrive. It isn't always an advantage being a nurse - I've seen so much and nursed so many people, some lucky and some unlucky. I recognised the life threatening aspects of my cancer. Before this event my mortality was not really in sight. That day in the clinic, it was brought right into my line of vision. And there it has remained.
Within the 3 weeks following the day at Bulli, I had taken unpaid leave from work. They were great. I had seen my surgeon, had x-rays, bone scans and blood work, all to determine the extent of the beastie's invasion. Each test I had, caused intense anticipatory anxiety. The bone scan was possibly the worst. We reported to the nuclear medicine practice and I was seen by a young man, who looked about 13!!! (But then all new hospital residents have been getting younger and younger). He injected the radioactive substance and off we went for 1 hour to allow it to go to the right bony places. When I had the scan done later, it was a claustrophobic experience, not helped by the lack of explanation from the aforementioned 13 year old technician. As time goes on I have become less tolerant and certainly have a shorter fuse. I think it goes with the territory. The good news was that there were no boney secondaries. My x-rays were clear, so my chances of survival were looking better.
Ruthie and I have a good relationship. We have been together for 5 years and we communicate with each other honestly. We had changes to make. We did not live in the same house, so we had to change that situation. We had mortgages to sort out and finances to consolidate. We both recognised the possible outcome ahead and decided that we needed to live together to share this experience and have a time for us. I left this up to Ruthie to sort out, which she did without blinking an eye, so I could try to settle myself down and deal with work and family. My surgery, a simplified radical mastectomy was discussed and it was the only option I would consider. I was admitted to hospital on November 19th. My post operative period was fine. I had effective pain control, dressings and drains covered my left chest. My surgeon had taken lymph nodes as well to see if the cancer had gone beyond the breast. If yes then I would need chemotherapy. This was something I was really dreading, I immediately thought the worst, you know hairless, waves of nausea and even things unrelated to chemo. I made sure that I looked at my wound very early in hospital and that Ruthie did as well. Eventually my drain was taken out and I resigned from work, or retired. We wondered about some friends who sort of dropped out of site and felt grateful and supported by the ones who stayed. We made some new ones who are now real friends to both of us. They say that a time of crises shows who your friends really are.
I had my cousin staying with me. Ruthie was doing all the running around and still seeing me every day with cheery smiles. Her loving closeness did wonders for my recovery. I must tell you that I had the drain replaced twice under general anaesthetic - the last on Christmas Eve 2001. As we live down the South Coast, it was right in the middle of the bush fires. We were evacuated twice from our little home on New Years 2002. So I guess it is fair to say we are also survivors. It was very hard for Ruthie I know. We are just like any other couple, challenged by an awful disease that may take one partner (me) away. That is outside our control. I have always tried to include her in every step. I am a private person and do not disclose my gayness, except on a need to know basis. My health carers and family know how important she is to me.
I have a thirst for information so I have researched breast cancer from every perspective. I am sad to say that I have not been able to locate any support services for lesbians and their partners here in Australia. There is one in the USA but I cannot find any others. It is therefore an isolating experience for us. I have found it a lonely road even with the usual support services. I tend to be a fairly self regulating and self contained individual. I did have some face to face counselling after I came home from hospital. This was more to sort out my relationship issues with my daughter, than seeking help for the aftermath of Cancer surgery. I felt an urgency to try to resolve any issues while I was still around. This belief was not shared.
My lymph nodes were clear and I started on Tamoxifen. After 5 months of medication, and the dreadful side effects of same, I revisited my oncologist and we ceased the Tamoxifen, and I went back on HRT, (oestrogen only). This was a calculated risk on my part. A risk that I believe was worth the slight increase in the possibility of a recurrence, in order to have quality of life.
I have a prothesis and special bras. I also have a special swimming costume to accommodate it. We swim regularly and have recently bought a bike to give me aerobic exercise. The biggest obstacle for me now, 12 months later, is still the uncertainty about my future. So we do all the right things, monitor my health, look about at all the things we have and cherish what we share together. And get on with it.
--Lyn, October 2002
As the partner of a lesbian woman recovering from breast cancer, I feel that our situation during the surgery phase was not all that different to heterosexual couples. Lyn has had all the necessary treatments and I have found all the doctors, nursing and social work staff accepting and understanding of our needs. It is now after the surgery and during the recovery that I am unable to find support groups that cater for me, the female partner. Although support groups for husbands of women diagnosed with breast cancer exist and in many ways would apply to me, I feel I would not be welcomed or accepted openly into this group, nor would I be comfortable talking openly within this arena about issues that affect me now. Discussions with friends about my fears and helplessness have been my lifeline. However I do know that they find it difficult to comprehend the almost paralysing fear that overwhelms me when I think about the future. Issues of pain, body image, sex, mortality and loss, are just some of the things that I feel the need to talk about with others. I want to be able to compare notes or something, anything that would give me a sense of ease that our situation is, as it should be during this time.
--Ruth, 2002
