Advice from other carers

[janey]

Hello, I am new to this site and I feel very emotional and sometimes angry about my husbands illness. I am wondering if there are others that may feel the same? Many friends have been distant even those who I have known for many years. I am feeling lonely and that when I start to tell people that I am just whinging and being a downer. Janey

[Jude]

As someone who has cancer, it can be a very isolating time for patients and their carers. People who have experienced this themselves are usually the best support. Health and support services are available also to provide support. Don't waste your time with fair weather friends, they require too much effort. My own brother hasn't spoken to me for two years, so I've assigned him to the back of my mind in the too hard basket. This has been my experience and I hope it helps.

[Jodii]

Hi Janey - I'm reasonably new to all of this to and as the carer of my husband who has incurable and inoperable cancer I can very much relate to what you are saying. It can be very lonely - especially when you come across people who don't know what to say to you or feel uncomfortable talking about it. I personally am a talker and if people want to know anything I'm happy to talk to them about it - my grown up children have difficulty talking too much about my husbands cancer tho and I have had people just not talk to me at work as they don't know how to deal with it. Find sites such as this and find friends or people who are supportive and bypass those who aren't. I struggled in the early stages after learning Eriks cancer was back with wanting to speak to others in the same situation - however the type of cancer Erik has is quite rare and through counselling and the lapsing of time I have gotten used to the fact that I may not ever speak to anyone who is experiencing the same as what we are going through. We are currently at the end of 6 weeks of radiation therapy and both of us have continued to try to work (full time) as much as we are able to during that time - and I think we've gone ok. Keep talking on here and send me a friend request - I'm happy to chat with you. Good luck xx

[janey]

Thank you for your response. I have noticed many mixed reactions and have felt shocked by some friends and family too. The ones that I thought would be of great support don't seem to acknowledge the illness or down-play it like it is a cold that my husband has. It is reassuring that you have had a similar experience. Thank you.

[janey]

Hi Jodii, Thank you for your response. I was reassured by how you described how different people have and haven't acknowledged Erik's condition. I can appreciate the loneliness and have realised that for me, the best people to talk to have been those who have been through cancer or those who have cared for others with cancer. I have had friends who have Googled the disease and offered me the textbook variations as well. (To be honest those ones were not of much support....only because I had already done that myself !!! That was a long and late night) We did have a positive result last week for my husband and he finished the last round of chemo today. I was just about to draw upon the counselling service offered by the Cancer Council as you and others had mentioned the benefit of it; and may still will as unfortunately, my dearest auntie has been diagnosed with Multiple Myeloma and her grandson has Leukaemia also. My husband Paul has worked as much as possible but the build up of chemo has knocked him for six. He can barely move for two weeks after the session. I really appreciate your response and how it is a struggle to watch someone you love be so unwell. My thoughts are with you both. Thank you again x

[Kirrili]

Hi, my brother is very sick and isolated at the moment and gets fatigued quite quickly. I am struggling to know how to support him as a sister. Does anyone have any suggestions?

[totoro]

Hi! Thanks to you all for sharing your stories, I really value your honesty and the words of wisdom!!! I dont feel quite so alone for reading your posts. My Dad was diagnosed with pancreatic cancer 2 months ago but instead of them (Mum and Dad)finding that people are pushing them away, they are doing the distancing! They dont seem to realise what they are doing and any words from me that might suggest that they need to open up to their lovely friends is shot down in flames. Even their approach to my sister and I is one of exclusion and seperation. We offer to do little things like mow the lawn/gardening, we get 'oh no, the Cancer council can get volunteers to do that for us, dont worry yourself'!!! You have a family to woory about about and you work, they told me today!! Yikes! While I realise that it really isnt a big deal in the scheme of things, I do understand that Dad is dying and making him comfortable is all that really matters, it helps me to feel a little more at ease that I can be of help in some simple way. Their decline of offers to help do hurt and ultimately disallow us to be involved in Dad's care through his final days. Another aspect which complicates the entire situation is that Mum had Non-Hodgkins lymphoma to her fronttal lobe 5 years ago and the scarring/radiotherapy has changed her personality to whre she now has a strong level of unfeeling about her. To probanly complicate matters I am an RN with 20 years experience. So here I am putting my foot in it constantly, trying to explain things to them about the medical treatment and Mum takes an afront that I am telling them what to do!!! Our journey as a family has only started, but boy what a trip it is going to be!

[totoro]

Hi! Thanks to you all for sharing your stories, I really value your honesty and the words of wisdom!!! I dont feel quite so alone for reading your posts. My Dad was diagnosed with pancreatic cancer 2 months ago but instead of them (Mum and Dad)finding that people are pushing them away, they are doing the distancing! They dont seem to realise what they are doing and any words from me that might suggest that they need to open up to their lovely friends is shot down in flames. Even their approach to my sister and I is one of exclusion and seperation. We offer to do little things like mow the lawn/gardening, we get 'oh no, the Cancer council can get volunteers to do that for us, dont worry yourself'!!! You have a family to woory about about and you work, they told me today!! Yikes! While I realise that it really isnt a big deal in the scheme of things, I do understand that Dad is dying and making him comfortable is all that really matters, it helps me to feel a little more at ease that I can be of help in some simple way. Their decline of offers to help do hurt and ultimately disallow us to be involved in Dad's care through his final days. Another aspect which complicates the entire situation is that Mum had Non-Hodgkins lymphoma to her fronttal lobe 5 years ago and the scarring/radiotherapy has changed her personality to whre she now has a strong level of unfeeling about her. To probanly complicate matters I am an RN with 20 years experience. So here I am putting my foot in it constantly, trying to explain things to them about the medical treatment and Mum takes an afront that I am telling them what to do!!! Our journey as a family has only started, but boy what a trip it is going to be!

[totoro]

Hi! Thanks to you all for sharing your stories, I really value your honesty and the words of wisdom!!! I dont feel quite so alone for reading your posts. My Dad was diagnosed with pancreatic cancer 2 months ago but instead of them (Mum and Dad)finding that people are pushing them away, they are doing the distancing! They dont seem to realise what they are doing and any words from me that might suggest that they need to open up to their lovely friends is shot down in flames. Even their approach to my sister and I is one of exclusion and seperation. We offer to do little things like mow the lawn/gardening, we get 'oh no, the Cancer council can get volunteers to do that for us, dont worry yourself'!!! You have a family to woory about about and you work, they told me today!! Yikes! While I realise that it really isnt a big deal in the scheme of things, I do understand that Dad is dying and making him comfortable is all that really matters, it helps me to feel a little more at ease that I can be of help in some simple way. Their decline of offers to help do hurt and ultimately disallow us to be involved in Dad's care through his final days. Another aspect which complicates the entire situation is that Mum had Non-Hodgkins lymphoma to her fronttal lobe 5 years ago and the scarring/radiotherapy has changed her personality to whre she now has a strong level of unfeeling about her. To probanly complicate matters I am an RN with 20 years experience. So here I am putting my foot in it constantly, trying to explain things to them about the medical treatment and Mum takes an afront that I am telling them what to do!!! Our journey as a family has only started, but boy what a trip it is going to be!

[purpleangels]

Hey there! It is a hard road to be a carer.... Just be kind to yourself. Nothing will be the same and your reactions may not be what you would 'normally' do as you always have that layer of hurt/ disappointment/ fear/ sadness/ lost dreams that underlies every decision and every experience. Just take time for yourself and do what you can do..... Just take it one day at a time..... Good luck!! PA XXX