this is is the first time that I have reached out in a public online forum. I have a number of questions and was hoping that I could get some advice and to connect with other people who are caring for loved ones with terminal stage 4 cancer. Firstly my mother was diagnosed with stage four kidney cancer in January 2017 which has spread to her liver, lungs and lymph nodes. She has been receiving wonderful treatment at Chris O'Briens Lifehouse. To cut a long story short I am starting to get very concerned about how the disease is affecting her. She is terribly fatigued, is having terrible episodes of diarrhoea and has lost her appetite and more alarmingly has depression and extreme anxiety. The only person she feels comfortable with is me. She also appears to get confused and has endless worry on routine things of life I really want to be able to assist her and calm her but I am not sure what I can do. I feel that she is deteriorating however no one really is giving any insights on time etc and I know this is causing more distress for her. Can anyone please provide any insights on what I should be doing for her. This is the first time that cancer has touched our family and I just want to make sure that I am doing everything possible for Mum. Thanking you, Andrea
Hi Andrea, I'm glad you found this forum, it's a great place to connect with people who have been in similar situations. My husband was diagnosed with cancer in 2011, and one of the things I've learned is that cancer effects everyone differently- there are no right or wrong ways to respond (for your Mum or you). The other thing I've learned is that everyone wants a timeline, and no one if able or willing to give one! That uncertainty is really hard to adjust to, but unfortunately there is no way around that.
The only other piece of advice I will give you, especially with that last comment in mind, is to make sure you are taking care of yourself, as well. Hopefully your road ahead will be a lot longer than you anticipate, and you've got to make sure you're in good condition to support your Mum for the long haul.
Sending lots of hugs, Emily
Thanks Emily, I really appreciate your lovely note. It's a tough road that's for sure and so hard to navigate. I am so worried about Mum and to be honest (you sound so perceptive) I am struggling as well. 3 children working full time (I have taken time off which is a huge worry although a blessing as my workplace is so supportive and caring). It's hard to take time out. Thank you I am so thankful that there are people such as yourself that I can connect with at such a frightening and hopeless time.
You have three children AND you're caring for your Mum!? Wow, that's massive! I found it hard enough with no kids!
Something else that might help as well is asking your Mum's GP, your GP or someone at the Cancer Council about government assistance programs you may be eligilble for- help around the house, taxi vouchers, help getting the groceries etc. Also, can I encourage you to accept whatever help is offered by family or friends. Often people do want to help, but don't know what to do- if you can give them a specific task they could do for you and your family they will probably be glad to know they could actually be helpful to you.
Just by the way, one of my methods of taking a bit of time out was to have a bubble bath on a Saturday morning- it was a great sanity saver, and a habit I've still kept up. If you can carve out a bit of time to spoil yourself each week, even if it's just a 20 minute coffee break at a cafe, it will really recharge your batteries. Given that you have so many people to look after, you may need to make it a set time each week, to make sure it actually happens.
Sending big hugs, Emily