More on Sexuality after Breast Cancer

Judging by the response to my previous post it seems I have mentioned the 'unmentionable'

Thank you for your  comments on the blog, and also to those that have chosen to email me personally. Maybe I had underestimated the degree of change in attitudes towards sexuality and sex after breast cancer diagnosis and/or treatment.

Given the level of interest, I decided to follow up on the original research. It led me to the Breast Cancer Network Australia and the results were published in the BEACON magazine. I had only to seek out my Autumn edition. If you would like to know more, simply follow the link:
http://www.bcna.org.au/news/resources/research-reports#sexuality

I have chosen to speak out on behalf of all women who have felt that for too long the problem has been hidden. Sex and sexuality is a very sensitive area and one that has a profound impact on women.

I have included a brief summary of some of the problems mentioned in the article and would be happy to cover them more fully if requested, although it is recommended that you check with your doctor, breast care nurse and/or the website mentioned. It may take courage for you to become proactive and enlist the help of sex therapists or counsellors but anything is possible.

 1.   Sexual confidence and barriers to sexuality

• physical effects such as fatigue, breast tenderness, pain and loss of sensation
• sometimes partners have trouble accepting the changes. Feelings may be different.
• partners may stop making sexual requests because they don't want to put pressure on us
• intimacy and sexuality is not just about sex.
• body image is important.
• adult products can enhance sex life.
• online forums and breast cancer support groups may be helpful
• then of course there is blogging; we are becoming 'old hands' at that

2.   An end to spontaneity
Spontaneity can become a thing of the past; it can become a major planned event. Sex can become not only unbearably painful, but virtually impossible. Treatment can put you into early menopause.

3.   Vaginal dryness: a common problem

Vaginal dryness can be a distressing side effect of some breast cancer treatments. It is one that is not often talked about and is often associated with menopause, both natural, and early, brought on by cancer treatments. Oestrogen levels drop causing the vaginal walls to become thinner and less flexible producing less lubricating fluid. Sex may become painful resulting in vaginal bleeding. There are a number of products that may be useful.

Common suggestions from women include:

• be yourself
• be honest
• sexuality is more than a woman's breasts
• ask advice from people who have been there, or health professionals
• talk about sexual needs
• take time for yourself
• do things that make you feel good about yourself

Women may find the following useful:

•  lubricants
• massage
• different positions
• oral sex
• vibrator or masturbation
• creating an environment to help 'getting in the mood'
• believe in yourself

More than 50% of women said they had not discussed with anyone the challenges they were experiencing with their sexuality or sex life. Let this be a forum for fellow bloggers to do it differently.

Thanks for stopping by and sharing your thoughts.

'Diagnosis is Killing Desire'

The following article was in the Newcastle Herald on Saturday 25 September 2010:

'An Australian study has revealed the broad and long-term impact of breast cancer, with most women reporting a major post-diagnosis blow to their sex lives.

Research by Monash University professors Susan Davis and Robin Bell found that 83 percent of the women described their sex life as good before learning they had breast cancer.

But within two years of being diagnosed, 70 percent experienced sexual function problems as a side effect of treatment, including a loss in sexual desire.'

'Self Imposed' Exile Over

Today my life changed! After 12 months of a 'self imposed' exile I DROVE MYSELF to East Maitland. Alleluia!

There were several contributing factors that saw me give up my right to share the roadway with fellow drivers. There was the tragic motor vehicle accident that took my much loved youngest son and saw him join his beloved Dad in Eternal Life. Then there was the fatigue that plagued me since the completion of radiotherapy in June 2009. Thrown into the mix was the dreadful pain, and prescribed opiates and other medications, to control it. As a result of the Metastic Breast Ca in the Brachial Plexus, I no longer had control of my dominant right arm/hand. We also upgraded our motor vehicle to a 4WD, which seemed to me to be bigger over all.

So I sat at home on the farm alone and lonely, except for the days that I attended yoga and Tai Chi. That is until today! Two beautiful friends, Sonya and Glenys, were heading this way for an appointment. They suggested it would be a perfect opportunity for us to get together for lunch. I even tried to renege on the deal last night, but, thankfully, Haydn refused to be a party to my insecurities and lack of confidence. He reminded me that my journey today was only 4 times to the village of Gresford and return. That's one way of putting things into perspective!

So, I did it! After saying a prayer to Saint Christopher, and asking the Lord to protect me and other road users, I headed off. It was a delightful day of perfect spring weather. My time spent with 2 very special friends has put me into a new place. I feel I have regained a level of independence not seen for 18 months.

'Memory' Moments

A quick follow up to yesterday's Post...

Megan phoned me today knowing that I would be super excited about some news she shared with me. I decided to ask her if she had read yesterday's Post as the information had come from her. I was surprised to learn that she had. My writing is very much for my own benefit; I do not want the family to feel pressured into reading my 'rantings.' Time for that when I am no longer around and they have unanswered questions about this person they know only as Mum or Ma.

I asked Megan if I had 'got it right?' She agreed that was pretty much what had been said. I went on to explain that 'things' were not always 'perfect' in my life and she may be surprised to learn this when reading the letters.

Her response brought tears to my eyes. She said 'Mum, I understand that you and Dad were not always perfect but your love was.

Touche sweetheart.

Something on my Mind

This afternoon I made a quick call to my daughter Megan. I am so glad I did. I had a question that needed answering, and I knew she was the one to ask.

When I met Ray in 1966 our courtship did not take the 'normal' path. I quickly realised this man was very special. We had known each other only a short while when Ray proposed. When he asked my Mother's permission she immediately said 'NO.' She accused Ray of being an alcoholic and, reminded him that I was only 18 years of age. Far too young, in her opinion. Ray was transferred to Tamworth  in the New England region of New South Wales shortly after. We missed each other dreadfully; the time apart dragged on for both of us.  The only way for us to get to know each other was by writing letters. There were no mobile phones, and public telephone boxes did not lend themselves to 'chatting' on the phone.

Consequently, I have an enormous box of hand written letters. Although I have lived in many homes over the years I have carried this box faithfully with me. I am not normally a hoarder, however there are some 'personal' things  I have treasured. Mum did agree to our marriage. I believe she got sick of Ray arriving in Dubbo from Tamworth and bringing with him a weeks washing and ironing. He continued to live the life of a bachelor, playing rugby and socialising with mates, while I did his washing and ironing, ready for him to leave first thing Monday morning. I was 19 when we married.

Ray, as Zone Manager for International Harvester Company, was on the road. Letters became the norm. Having carried the letters for over 40 years, I am now beginning to sort through personal things and nominate where they are to go. I asked Megan if she was interested in having the letters. I was a little surprised, and thrilled, by her reply. She definitely wanted these 'treasures' as she has wonderful memories of life in a family that epitomises 'perfect' love.

I must admit that, at the time of Ray's death in 1994, I reflected on my many years of marriage to this amazing man and I realised that I had enjoyed 27 years of unconditional love. Who could ask for more?

Megan, thank you for this beautiful compliment. I am so glad that we  were able to provide a loving, secure environment for your growth, leaving you with wonderful memories.

Aries are 'Carers'

Haydn and I, both widowed, met and married in 1996. Although we separated, later divorcing, we remained the very best of friends. It was a tragic set of circumstances that made living together almost impossible; those that know us are not surprised that we are still together. This came about, more or less, as a result of my Breast Ca diagnosis. Haydn was prepared to do everything possible to give me the very best chance of survival.

I continually ask myself what has changed?  These are uncharted waters for me. For as long as I have know Haydn he has stated, most emphatically, that Aries are 'carers.' He wears it as a badge of honour. He has a daughter that now mimics his words.

Why do I not feel that I am being 'cared' for? What do I say when I am not in agreement? It seems to me that anyone can be a carer; people get paid to work as carers. Being someone that cares is quite different. I remember reading somewhere that the person that cares least in a relationship, rules the relationship. I suspect there may be some truth in that statement. I think it was the poet H.W. Auden that said 'If equal affection cannot be, let the more loving be me.' All the more reason to embrace my current situation and learn to be more loving.

Maybe I am being overly sensitive, but it is almost as if duty calls when Haydn does things for me. I feel so very vulnerable these days that tears are a common thing. I am immediately told to 'STOP BEING EMOTIONAL.' Why won't he listen when I try to explain that tears are an essential part of the healing process? For me, at least.

Many of you know that the isolation of life at the farm has presented many challenges. I willingly moved to the farm at the time of our retirement, secure in the knowledge that I owned a motor vehicle and held a Driver's Licence. I still hold the Driver's Licence but do very little driving. Fatigue is a common side effect of the medications that control my pain, allowing me to function, albeit at a much lower level than I am used to. The return trip to the city is 180 kilometres and it seems I may never drive that distance again. I will never put myself, or others, at risk. Maybe I have lost my confidence. Who knows?

The thing about Hayd is his love of all things farming. He heads out first thing in the morning. Lunchtime comes and he will come in and get his own lunch. What is wrong with me having the expectation that he will at least consider me? I just don't get it! Food is not really a priority for Hayd, he claims he eats to live. Knowing that healthy food choices are important for me at this times it concerns me that I find myself dependent on someone to assist with food preparation. There must be 'gadgets' out there that will allow me to live a little more independently. I feel extremely frustrated that I am unable to chop, slice, peel etc. Even making a salad sandwich for lunch [using the left hand] can be very difficult.

How do I learn to 'EMBRACE' my current situation?  I have to be asked to be driven to doctor's appointments. I miss attending therapy sessions because I have no way of getting there. My arm is swollen with lymphoedema and I have enrolled in the Encore hydrotherapy programme, without knowing how I will get to weekly sessions. I miss my friends, and the lunches, and group meetings that were part of my life. It seems like it was another world. Haydn and I have never had mutual friends. He likes to live the life of a recluse. Gardening and domestic duties are on the back burner for me these days because of the disability that I am learning to live with. In spite of all of this, my 'real' issue is the fact that I live with someone that claims to be a 'carer' and he does not 'care' enough to ensure that we eat healthy and nutritious meals together.

I suspect there is more to this......

Floriade 2010

Floriade is the largest garden show in Australia. I think!

There is nothing quite like a field of pink tulips [especially for you Karen]

Pictures courtesy of the Floriade official web site

I am hoping to visit and see all of this for myself for myself

All this and so much more

Floriade comes from the Latin word floriat, which means to design with flowers.

Over 1 million bulbs and annuals are planted each year for Floriade, depending on the garden bed design.

A mix of flowers, predominantly bulbs create the kaleidoscope of colours that set the backdrop to Floriade. Some of the blooms include tulips, irises, daffodils, hyacinths, violas, chrysanthemums, ranunculus and daisies.

There were tears of joy when Haydn surprised me today by suggesting that we spend a few days in Canberra to take in the sights of Floriade. Given that my gardening days are numbered, I was relieved to feel my enthusiasm is still very much alive.

Yesterday I became aware of soreness and pain on my right side, in the area of my latest breast lump, which is just below the collar bone. Tonight it appears to be warm, and even more painful. I suspect there is inflammation. I am in a dilemma! Do I begin taking antibiotics? As I am prone to cellulitis my doctor advocates always have a prescription for antibiotics made up and ready for any emergency. My question? Is this an emergency?

Spring and Floriade go hand in gardening glove and I want very much to have this opportunity. I am prepared to put up with the joint pain, and sit as often as required, as long as I can make it.

Fortunately, I have an appointment to see my doctor Tuesday and yet I know if there is inflammation, and cellulitis, it will have taken hold.

Tonight my prayers will definitely be for healing.

Yesterday's Appointments

Although I commenced my working life as a dental nurse, the fear of dentists, instilled in me as a child, has stayed with me. My Mother's aversion to dentists so strong that she had her own teeth replaced with dentures as a 17 year old. I have spent many hours, and lots of dollars trying to keep my own teeth. The fact that I have numerous crowns, plus a bridge, still count towards my own teeth. Rather than drive the 180 kilometre round trip to see my regular dentist, I was pleasantly surprised to find a young female dentist in this area. Dr Khan gives painless injections, and appears to have an amazing ability to find decay when there is nothing obvious. This was the case when I visited recently believing that the grape seed that managed to wedge itself into a tooth was actually a cavity. As it turned out, apparently it was stuck in a most unusual and intricate bridge. One that had originally been done in Singapore in the 70's. What she did find however, was decay in the tooth beside it.

Today's visit was to have the tooth filled. I remembered to have her note that I am taking blood thinning medications. We discussed the situation, with me explaining to her that I may well be on it for the rest of my life. Dr Khan reminded me that it is important to have my INR levels checked prior to any dental work being done. It seems that even large fillings can lead to excessive bleeding; something definitely worth remembering. She also pointed out that the dry mouth I have from the medications also puts me into the high risk category for new decay. Just what I needed to hear in my twilight years.

Next stop Calvary Mater Hospital Oncology department for a routine check-up. Dr Lombard, my regular Medical Oncologist, is on maternity leave at this time. In her absence I have been seeing her registrar, however, today it was Dr Turner, another young female doctor . The first thing she did was to compare the two PET Scans. My original and base scan, done in February and the second in July. Once again, she explained that she does not like to get patients hopes up but the improvement is absolutely amazing. I did not feel the need to explain that I am also taking a supplement used to balance hormones in post menopausal women. I will never know for sure if the results would have been as good without them and I am not about to find out. While ever I can afford them, I will continue to take them.

My regular doctor had suggested that I ask about the benefit of taking some form of blood thinning medication for life given that my current blood clot is extensive, going almost the full length of my right arm. As is my practice, I mentioned my concerns with taking Femara due to the risk of blood clotting. She immediately said that taking Femara is not an issue, it is Tamoxifen that can cause blood clots. My dilemma then was whether I should refute her statement. I stumbled to find a way to say that the leaflet enclosed with the Femara gives the warning signs of blood clots and states that if, as a patient, you suspect a problem then you should present immediately to your nearest Emergency Department. Dr Turner then asked me to be patient while she did further research. She found the information and agreed that there is indeed a slight risk. As I have said before, the fact that it is in less than 1.2% of the population means nothing if you happen to come into that group.

She then went on to say that there was a single study indicating that there could actually be a benefit for cancer patients having daily Clexane injections rather than taking warfarin tablets. I was surprised to hear that approximately 30% of cancer patients at the Mater require blood thinning medication. Seems I am only now learning that as a result of having active cancer I will always be at risk of blood clots.

Into the mixing pot I add my daily dose of Femara and Epilim; it is no wonder I have concerns.
Apart from the odd lapse, I endeavour to make the most of each day, remaining confident, and optimistic, that 'things do work out best for people who make the best of the way things work out.'