Feeling in the dark about Mum's cancer treatment

hi LindsayT81 

You are definitely not being pathetic. If we look at Your feelings when someone has cancer we can see how normal you are being.

For us it is my wife who has the cancer and we have a son with autism. We have always been very open with him. When Janice was really ill we asked him if he was ok with this and he said "no not really" and then asked what would happen to him if I was ill too - I have had a few hospital stays myself. We were able to reassure him that we had thought of this and his aunt and uncle were nominated guardian and that helped him feel more secure.

We have some booklets you can get on talking about cancer that you can see here

I know when my mum was ill that my dad was not as open as I would like - it really did not help me because I felt that they did not trust me where to him I am sure he felt he was protecting me.

If it helps you to talk remember you can always call our helpline here too - it is for everyone affected my cancer and that includes family and friends.

<<hugs>>

Steve

Hi,

I have just joined this page today as I have been told by my mum that she has stage 4 breast cancer, in her bones, stomach and basically everywhere. This is the 2nd time she’s been diagnosed with cancer so it kinda feels like life is going round in circles and just getting worse.

I wanted to say there is nothing wrong with crying or being sad, it is the most devastating thing that can happen in life, a loved one who is sick and you feel helpless as you cannot do anything but be OK for them. But this is hard and as much as you want to be strong and plod along with your life - this isn’t the case. 

Looking online and doing research is a great way to understand and figure everything out in your head. I spend a lot of time listening to podcasts or YouTube videos relating to subjects that link to me, and hearing peoples stories and situations gives me clarity.

I hope you are doing okay and wanted to say I understand how you feel.

 Sian

Hi Sian, I'm so sorry to hear about your mum being at Stage 4. Thank you for your reassurance about my feelings though - my mum did have breast cancer back in 2014 which was thankfully treated successfully after being picked up by a routine mammogram. 

The ovarian cancer diagnosis has thrown me more than the breast cancer diagnosis because ovarian cancer hasn't had as much awareness as breast cancer. With the ovarian cancer, the treatment so far has thrown my mum because of the hysterectomy plus she will need to have chemotherapy as a precaution and that may throw Mum even more.  This even with her prognosis being good and the belief that most apart from a very small amount of cancer (micro metastases - best way to describe it is cancer that can't be seen) being removed. I know so far Mum has and will have a tougher fight this time, as she's almost ten years older. She was 59 when diagnosed with breast cancer and now 67 - this diagnosis has made me realise that my parents are getting older even though they are relatively fit people - this is also why I want to be able to help where I can.

With the thing about being protected, I find this very patronising because whilst I'm my mum and dad's child, I'm an adult - I'm 41 with a partner and 7 year old daughter from a previous marriage, and will be 42 in June, so its getting my parents to show more adult respect. It also made me feel inadequate because of my autism as I've had experience of bullying and discrimination. I also note everything mum tells me about her appointments so I can ask questions and gauge a better understanding of the situation.

I've also found it hard when people in my extended family ask solely about my mum, when they should also ask about me, my dad and my sister and how we're doing.

With my dad saying that I shouldn't upset my mum, this puts me in a vulnerable position in that it can exacerbate the problems I've had with my mental health and also isolate me. I also think by seeking professional help and talking to someone, this has been a massive help and I plan to continue this.

What I will say is that this diagnosis has changed me as a person because I am not scared to really speak my mind, even if it means not caring what I think sometimes. It's the fact that some family members have shown a total disregard for my feelings during this journey. I also don't have time for people who wish to waste opportunities neither.

Thank you for your understanding and good luck to everyone affected 

Love Lindsay xx

Thank you for your understanding Steve - it's good that you've been open and honest with your son, especially with his autism. The key things people with autism need when a loved one has cancer are honesty, structure, predictability, acceptance, tolerance and respect.

Plus people with autism can struggle with their emotions especially with the way they are able to express their feelings, as they have to work harder than non-neurodiverse people in difficult situations too.

I feel its important to tell the person with autism that it's OK to feel upset - I have also noticed in my mum's journey that there are no factsheets or information on supporting someone with autism affected by cancer whether they have cancer or their loved one has cancer too. If possible, I would be interested in wanting to work with someone from Macmillan in this regard. 

It's also important not to judge the person with autism if they don't feel positive so not to upset the person with cancer. For me, people on the autism spectrum can be misunderstood by the people around them when they are behaving in a way which shows upset - because family members are seen as coping when they're not upset, it puts autistic people in a vulnerable position.

People's attitudes can impact on the person with autism in that their behaviour can change either for the good or bad, eg, become mute, not talk about their feelings, show an increase in obsessive behaviour, become more rigid in dealing with routines and the sort.

Wishing you good luck in yours and your family's journey too x

Decided to check and see if you posted elsewhere, per the idea presented by latchbrook in your first thread, and I see that you did. Has your situation improved in any way, shape, or form? Just wondering, that's all.

Things have improved particularly as my mum is doing well with her treatment plus I think it's the realisation that it is important for my parents to be honest with me x

That's good to be informed of. Thank you for the update.