Your Questions Answered

If these answers need further clarification please feel free to ask more!

1. How are you doing now? 

I am doing well now. I have a number of chronic illnesses and some deficits however I have embraced life 2.0 and am loving it.

2. How has your life changed? 

There are things that I used to worry about before I went through this experience which just do not matter anymore. My perspective on life has shifted and my personality has changed.

3. Did anything positive come out of the experience? 

There are so many positives. I am still alive to see my children and my grandchildren grow up. I was able to care for my father through to his last moments. I am more confident, things that scared me before seem silly. I have been able to meet and spend time with some amazing people around the world who I otherwise would not have met. I have so many dreams, ideas and goals that it blows my mind.

4. How did your family hold up?

I think it was just one day at a time. Life was hard. My husband had so many thing that he was worried about that he did not verbalise to me until 6 – 7 years after surgery. Often I think our loved ones are overlooked because the clinical focus is on the patients. I was very worried that my illness had caused my children to have a terrible childhood and that they may be damaged beyond repair by the experience. Our youngest is now 22 (he was 6 when I was diagnosed), he tells me that he had no basis for comparison so he didn’t feel like he missed out on anything because that life was the only one he knew.

5. How did you mentally keep going? 

While I was ill it was very much a day by day, hour by hour, minute by minute thing. I was in a lot of pain for a very long time. My quality of life was pretty low. I kept thinking about the people who needed me to stay and to keep going. The ones who needed me to be there for them

6. What kept you going through it all- what kept you strong and gave you hope?

While I was bed ridden I had my camera with me and I would try to find at least one thing each day in those 4 walls that was beautiful. It could be anything from a flower left by a friend to a particular arrangement of objects on a table.

7. What were the biggest hurdles? 

Emotionally the biggest hurdle was the incredible guilt I felt for my husband and my children having to live a life where we couldn’t make plans, we couldn’t go and do things other families were doing and my poor babies had to grow up very quickly. Physically the biggest hurdle was getting my body to work again post op. mentally the biggest hurdles was trying to regain a sense of reality. My mind was pretty scrambled and my memory was effected so it was difficult to track things, make decisions and follow conversations.

8. How does it impact your life today? 

I have impaired vision and hearing, some mild left side weakness, hemi facial spasm etc. I still have problems with memory and some cognitive function but I am constantly working to improve those things or using tools available to me to manage them. I.e. we have a google calendar which my husband and I share. If things aren’t in the google calendar they don’t exist. I have all my medications put in Webster packs by my local chemist so that I remember to take the right medications at the right time and don’t have to manage large quantities of medication on my own.

9. What you found to be most helpful, i.e. what did other people do/say to support you that you found to be most beneficial?

Other people understanding that if I forgot a name or a date or an event that it wasn’t personal helped immensely. People who were willing to listen to what I needed and tried to understand how and why things are/were that way.

10. What you wish rehab services/supports could do/know better. 

The biggest problem is that patients don’t know what they need or what is available.

11. What ways we can best use your lived expertise to improve the system.

I am currently completing my bachelor of psychological science and have applied for a Master Public health in order to use my lived experience to help shape policy and systems to make it work better for other going through this experience. Ask questions, I am pretty happy to answer what I can and help where I can!

12. What things/moments have been most important in getting you through?

 

The most important moments have been the joy of spending time with my loved ones.

13. What support needs have you had that haven’t been met by the services available to you? 

Mostly we had to seek our own supports. When I first came home I had profound short term memory impact but as we were 100% reliant on my husband’s income, he had to go straight back to work and I had to fend for myself and try to manage the children without having any support there at all.

14. What would you like clinicians/researchers/funders/policy makers to do better?

Dear Clinicians, listen to your patients, they are people.

Dear Researchers, please keep up the great work! We need to better understand the needs of people living with brain tumour and beyond so that we can better support them through what is a horrific experience.

Dear Funders, please help our clinicians and researchers by funding their initiatives and research.

Dear Policy Makers, Please listen to you patients, their families, the clinicians and everyone involved so you can get a really good idea of what needs changing and how it needs to be changed.

15. Invisibility of ABI symptoms

Many of my ABI symptoms are invisible. I tired quickly when I am overwhelmed by people, noise, information etc. It means that I have to build rest days into my week where I can just do nothing and rest. If I become too tired and too stressed I have seizure events, one of these landed me in ICU for two days earlier this year. I have trouble finding words and organising them when tired. It can make for some very tangential conversations!

16. The fact there is hope for ongoing recovery after the dreaded 2 years

The 2 year thing is a lie. At 6 years post op I was able to do mathematics in my head again. After that I have regained skills like crochet and knitting. I have found that if you don’t keep trying to do things they don’t come back. You have to work every day to keep going forward.

17. Strategies for managing symptoms of ABI and the social experience (what has been helpful/not helpful in your social networks)

Having support groups of other people with brain tumour has been a blessing. It can be difficult to explain the things you are experiencing and how you are feeling to people who haven’t been through something similar. Those support groups mean not having to go into minute detail to explain why something I happening, they ‘just get it’. Having a network of amazing friends and family who have been able to understand some of these issues have meant I have been able to try and do things I would not have ever dared to dream.

18. How did your experience/s with the healthcare system compare pre to post surgery?

Before surgery I was often treated as a drug seeker. If I was taken to emergency in pain I would be treated poorly and sent home. I had one incident where I was vomiting in the garden outside the emergency department having been in extreme pain for an extended period of time. My husband was told to give me 2 Panadol and some Lucozade and take me home.

Post op has been almost the complete opposite. I was at a fun run, had to stop because I had a thunderclap headache. Next thing I knew the course doctor was there and then an ambulance with two paramedics trying to get lines in. They took me to emergency where I was rushed to acute care via imaging, had a nurse and a doctor in the room with me the whole time and was lined up for a world of tests and medical interventions. Post op I have been criticised by nurses and paramedics for refusing pain medicines.

19. Is there anything you wish you had been warned about or more prepared for following surgery?

I wish someone had told us that having surgery interstate meant that there would be no support at home. Having surgery interstate meant that my advance health directive didn’t mean anything as it wasn’t from the state I was having surgery in.

20. Having gone through what you've gone through and knowing that self-care is important what did you do to self-care?

I take time out from the world to sit in the garden, to explore the world through the lens of my camera and to just ‘be’ with my family.

21. How did your family/supports respond to your diagnosis/surgery/injury? 

There were a variety or responses. Everything from one family member telling me they had applied for jobs interstate, which left me wondering if I had actually said “I have a brain tumour” or just imagined that I had said it. Some family members stayed away. Many of our friends drifted away. We were largely left to manage it ourselves. Except for the part where I was caring for my parents…

22. What do you wish they were told/provided at various points?

I wish someone had told me not to google my diagnosis. The first thing we found said “Can cause sudden death” that is a scary thing to have in your head.

I wish someone had told me that I was going to have to fight the health system to get the care I needed.

I wish someone had told us about the supports that were available to us pre and post op.

I wish that someone had offer us some psychological support

23. How did you start as an advocate? 

I started as an advocate when I joined a support group of other patients with the same tumour type as mine. From there I joined Brain Tumour Alliance Australia and worked for them for some years. Now I work with some incredible clinicians, researchers, patients and families to help change the way we manage these issues.

24. What advice do you have for others?

Ask for help. Make lists and post it notes for the things you need to remember. Keep going.

25. What you were told that was useful 

This is less like a marathon and more like a dance. Forward is the direction to go in, but sometimes it will be a cha-cha and that’s okay too.

26. What you were told that wasn't useful

“You should give your brain time to heal itself” “you should try <insert latest miracle cure>”

27. What you weren't told that you really wish you had been.

This is going to be hard. You are going to need help. Ask for help!

28. What were you told would not be helpful/wasn’t recommended but you did anyway and it helped/worked?!

Having surgery. I was told that it was inoperable, ‘I wouldn’t touch it unless you were in a coma” ”it’s too dangerous”. I had the surgery and I am alive. Without the surgery I have no doubt in my mind that I would have been dead by the end of 2011

29. I wonder about the value of peer support?

Peer support is what gave me the courage to try for a second opinion and to advocate for myself.

30. How have connections with other survivors impacted your recovery? 

Being in contact with other survivors has given me the ability to ask other ‘Hey, did this happen to you?” “Is this normal or should I go see someone?”

31. What are the possibilities for peer support?

There are face to face support groups around and there are online groups as well. There are groups for patients, carers, parents, children, any combination you can think of. It is a matter of finding a group that works or you.

32. What % of recovery is your own work? How do we optimise this?

I’m not sure I can quantify it but I think being incredibly stubborn and refusing to give up has played a very large part in my recovery. Learning to back it down a bit has been a lesson of its own.
Encouraging people to keep going, to keep trying that thing that is challenging them and then being able to show them how much they have achieved since they started can be incredibly helpful. I wrote a blog post every month for the first few years of my recovery just so I could see for myself how far I had come. Jules Musings

Thank you so much for your questions! If you have more please ask.