Best Of

@Dani1981 Hello and welcome! I am a few months further along than your mum also with early stage but will have the whole gamut of preventative treatment. I think you are a similar age to my wonderful son so am drawn to sharing our experiences as a family. Nearly 7 years ago he was told he has MS and we were shattered. It has been a roller coaster ride with him as he has had success in keeping MS in remission with immunotherapy but awful and ongoing side effects. His beautiful partner(now wife) and my husband and I went your present journey with him and early on agreed that as a team we were stronger. We agreed on no secrets and after every appt they shared all details so there we could deal with knowns. We also agreed to acknowledge how we felt and so could help each other when one was struggling to look at the end goal. Now my diagnosis has added to what we have to deal with and caused tears and fears again. However by continuing the same way and recalling how much it helped me with being a support but helpless to change the situation I find that now the roles are reversed it is a great relief to be able to dip into the love and support that surround me knowing we are all on the same page. I went to a psychologist after his diagnosis and the CBT strategies she taught me then have stood me in good stead now. It also helped me unload those initial intense emotions on someone not directly impacted so I didn’t have to hold back for fear of adding to my loved ones problems. You can get up to 10 subsidised visits with a mental health plan from your gp if you think it would help you too. I can see the love you share with your mum and like me she is regarded as a strong person so you will find your way together and be stronger for the sharing of all the ups and downs of the roller coaster ride ahead. We find many things to feel lucky for along the way (especially the arrival of a beautiful baby this year) and I am sure you will too. Your mum’s first one is having you as her daughter - trust me! Thinking of you both. 😘

20 years ago I was in your situation with my mum. It was an extremely traumatic time and I still carry the stress and anxieties that we went through together. My mum was 80 when diagnosed and I really don’t think she ever accepted the diagnosis. Last year I was diagnosed with breast cancer - what a bugger! Given mum’s age and my age at diagnosis (67) they don’t believe there is the genetic factor - all seem to put it down to ‘bad luck’. The last 12 months have been a very anxious and stressful time as I moved through the treatment plan, I am now in a pretty good place although am feeling somewhat anxious as I approach my 12 month scan. I actually think I coped better with my own diagnosis than that of Mum. It is so complicated when you are the support person because we have to respect the feelings and decisions of the other person.  I remember saying to mum to write down all her questions and she was most upset with me because in her words, the doctors know best, and it is rude to question them! I was reluctant to ask my questions over the top of her.

My breast surgeon is private and I too ended up with about $8000 out of pocket expenses. My situation became a bit complicated and as a result was referred on to a public oncologist. I could not believe the level of care, compassion and treatment received by a large number of practitioners in a public hospital. I also felt guilty walking out and not paying a cent. The first PET scan I had cost me around $900, when I had the second 12 months later as a public patient, there was no cost. I will continue with my private breast clinic and accept there will be a cost involved, but I cannot fault my oncology care at a public hospital so will continue with this. All doctors are very happy about this and there is regular communication between them. They continually tell me it is the patients choice as to who they see, and it is important that this is your choice.

Make sure you take some time for you while supporting your Mum. The treatment plan seems to go on forever, and if you are anything like me, even the in between times were a constant worry for me as to how my mum was coping.
I lost mum 20 years ago now, but I have no regrets about the time I devoted to her at a time of great need.