topic Re: Advice from other carers in Coping with a loved one's cancer

Advice from other carers

janey — Wed, 04 Mar 2015 09:17:12 GMT

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

Re: Advice from other carers

Jude — Wed, 11 Mar 2015 03:18:01 GMT

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.

Re: Advice from other carers

Jodii — Wed, 11 Mar 2015 04:57:06 GMT

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

Re: Advice from other carers

janey — Mon, 16 Mar 2015 10:47:40 GMT

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.

Re: Advice from other carers

janey — Mon, 16 Mar 2015 11:10:10 GMT

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

Re: Advice from other carers

Kirrili — Wed, 10 Jun 2015 11:31:56 GMT

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?

Re: Advice from other carers

totoro — Sun, 14 Jun 2015 10:35:59 GMT

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!

Re: Advice from other carers

totoro — Sun, 14 Jun 2015 10:36:21 GMT

Re: Advice from other carers

totoro — Sun, 14 Jun 2015 10:36:36 GMT

Re: Advice from other carers

purpleangels — Mon, 22 Jun 2015 11:00:50 GMT

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

Re: Advice from other carers

Hope_093 — Sun, 31 Jan 2016 12:25:48 GMT

Thanks to all of you for advice and support. I am new to this site as I aswell was feeling lonely and in need to talk to others but to also read others stories. My boyfriend of almost 6 years has stage 2 cancer he is almost at the end of his treatment at this stage. I am so worried that it's not over yet and am longing for things to go back to the way they were before all of this. I also feel as though my closest friends don't understand, or even like to acknowledge what is going on in our life and are being very distant. But as I say that, my parents Are the most supportive and caring people around me and yet I'm the one pushing them away and not able to talk. I think this may be because I don't know if I can talk to them about it all and how much I'm struggling as I want to appear strong. I don't know if anyone else is going through the same difficulty as me and if so what advice can you give me? Sending everyone best of wishes -Kirsty

Re: Advice from other carers

Sat, 06 Feb 2016 08:00:23 GMT

Hello there, I am new to this site but I am reaching out because I feel I am struggling and I feel I need to talk to someone before I fall in a heap. My mum was diagnosed in 2011 with bowel cancer. Numerous doctors appointments, operations and treatments later she finally had a year cancer 'free' in 2014. The tumour came back with a vengeance Jan 2015 and now here we are digesting the news that we have done all we can. As of Jan 2016 the cancer has spread to lungs, liver and pelvis despite our best efforts. Even writing this has been hard. We are accepting the fact that we do not have long, months - if that, with mum. I have 2 sisters, 1 brother and my dad along with a massive extended family. All of these people provide support (ironing, cooking, mum's company etc), but despite that I feel I cannot talk to anyone about the billions of emotions I experience on a daily basis. I do not live at home with my parents, but I find myself there everyday. I cook the meals, walk the dog, take mum to appointments and most importantly provide her with the support she needs. I also organise a 'roster' for other family members to be there and look after mum. I feel am needing to be the rock of the family for us to continue on. Without rambling on much more, I am struggling. I made the decision to start uni this year...when things were looking ok...and now I am not excited about the idea more terrified. People are telling me to do something for myself but that is the last thing on my mind..Who will look after mum when I can't? Who will do the shopping? How will she feel if I'm not there? What will happen to study when she does leave us? I am really starting to crumble and my 'happy-go-lightly' facade is failing me and I needed to have someone to talk to/draw advice from on how to cope and ultimately survive. Any advice? Or even similar stories so I am not so alone in this. Thank you Rosie

Re: Advice from other carers

Free — Sat, 06 Feb 2016 12:02:44 GMT

Rosie, I hope you can get some rest and perspective on this soon. Like you I have 2 sisters. Although working full time, I have always tried to do as much as I could to support Dad with Mum's care. Because I love her, but also I think because it made me feel safer. It gave me a sense of control over an uncontrollable situation. Like your Mum, my Mum is now coming to the end of her long cancer battle, but with some extra challenges in my life, I have had to step back and accept an increasing role by my sisters. Is it possible for you to do this too? Is your Mum excited about your uni enrolment? Would it give her pleasure to see you fulfilling a dream before she passes? It sounds like you find it hard to justify doing things for yourself, perhaps it might help if you viewed it as an opportunity to make your Mum happy. It is certainly not a selfish act. If you think it will just be too much for mow, them defer your course. But remember, deferring uni is not going to change your Mum's reality. Perhaps stepping back a bit will help you prepare for life without mum. Maybe there are others who would cherish the blessing of time with mum while you are at uni. Only you can make the decision. Just breathe. It sounds like you have been an amazing support. Keep journaling your thoughts and emotions and know that this site is a safe and caring space for you. Big decisions are incredibly difficult to make when emotions are in turmoil, but you are a fighter. You have fought for your Mum's survival for five years, when you are ready you will also know how to fight for your future happiness. Just breathe.

Re: Advice from other carers

GHT — Sat, 06 Feb 2016 15:47:42 GMT

Dear Rosie I agree with Free that doing uni (even 1 subject)might be positive for you and bring joy to your mum to see you doing something valuable for yourself. It may also give you another focus and you can let your family take more of the responsibility for day to day care of your mum. It doesn't mean you love her any less. You just sound a bit burnt out which is perfectly normal. As a cancer patient now in remission after last year living in limbo and on hold, I know how hard it can be to act like your life can go on. All those emotions can really get in the way of living like there is a tomorrow. Grief is hard to accept to I know as I lost my best friend as she couldn't cope. Anger and sadness can churn with all the other emotions.But you will find your way. Be kind and compassionate to yourself and as Free says Just Breathe

Re: Advice from other carers

Sat, 06 Feb 2016 22:04:32 GMT

Hi Free, Everything you said resonated with me so much, thank you for your reply. It is re-affirming to hear your story similar to my own. I do find it hard to do anything for myself, even when I leave my parents place for a 'night off' I still feel bad for leaving, ridiculous I know. My older sister is a great help, she works full time as well. The younger one (also starting uni) is a little bit harder to work with, she's used to everyone else looking after things and needs to help more. My brother doesn't set aside the time to help and it has been unproductive asking him for help (whole other issue). Mum I think has mixed feelings about my study, happy for me but upset as I won't be around like I have been. But You are right. I will let others help where I can't and breathe. I think that will be my new motto, take it in my stride and breathe when my head is spinning with those thoughts. Thank you for listening and providing me with some positivity and recognition that I am a fighter. It is exhausting. Again thank you free and I hope that I can offer some words of wisdom and encouragement to you and/or anyone else who needs it. You are a strong person, even stronger for helping me through this forum despite your own hardships. Good luck.

Re: Advice from other carers

mwanzamama — Wed, 02 Mar 2016 17:45:02 GMT

Hi Janey, I am feeling much the same as you...and tonight I went looking for some help. My husband was diagosed 12 months ago with rectal cancer...it's curable they said.....chemo/rad/surgery/ileosomy/chemo/chemo and we were completely gutted on Monday when we were told he has secondaries in several areas...I am in that raw and vulnerable stage at the moment...have amazing friends who want to help and offer support but I really don't know what to ask for. I am angry and sad and constantly crying and don't know what to do to get out of the pit...but hide it all from the family because they won't cope if they see me break down..

Re: Advice from other carers

mwanzamama — Wed, 02 Mar 2016 17:45:05 GMT

Re: Advice from other carers

mwanzamama — Wed, 02 Mar 2016 17:50:09 GMT

And I don't know why that posted twice 🙂

Biting our tongues :) RE: 'Advice from other carers'

iLIV — Fri, 01 Apr 2016 04:27:07 GMT

"Hi (& a BIG thanks) to ALL those 'above' whom had commented on Jane's post to a hello to those 'carers' to those fighting cancer in reading my post now". Thoughts & prayers to you ALL :) Personally (as a carer & to being a loyal & loving friend whom is going through such a terrible life-changing & testing times); experiencing cancer in my life ...... so sucks. Pardon my language. Over recent years I have heard of others (not so close to me) being affected by cancers; either of friends, partners & family members with myself (or my life) now being inflicted with such helplessness; grief; uncertainty & utter sadness. At times I feel anger too (though kept inside 99% of the times when together) to myself; upon being inflicted with words against me. While my intent is purely to help. When all i do (I try my hardest) best to assist in support; out of love; compassion to understanding. Being the ONLY person in my friend's life; I purely understand a 'carer' (of any description & circumstance) is a 'sounding board' to vent such anger; frustration & hurt. Sure certain 'personality types' have such 'traits' to be a certain way RE to be critical to over analyze others to actions by others; to even words. Having cancer sure does 'bring-out' certain traits ('as above' paragraph) even more :( Every visit; I am faced with possible treatment; though as one does (which Ive learned very quickly after early diagnosis last year). we have to 'take-it-on-the-chin' & try not to take it to heart with such attacks of our support; whichever it maybe. Reacting to such treatment ONLY ends up with silly to heated arguments; only to work-up blood pressure to discontentment towards us. Though sure is lovely when I get the apology soon after such 'words'; when my friend realizes of 'lashing-out' to me. In ways I understand why one does this; especially when there's no one else around. It is great to still visit my friend regularly (every week) to sms-ing twice a day; once in the early morning to one in the early evening to maintain regular daily contact. So I know how my friend is feeling & thinking. 'Routine' is so important when caring for a friend going through cancer. Even though (as carers & friends) we may not feel like it; it is our duty to persist to putting them 1st. So great to be appreciated (& thanked) to do the small things for them; that seem big things if they were to do it themselves though being too weak to do so. 'Biting our tongues' is surely the best thing to do; when our beloved ones battling to fighting cancer lash out against us. Every day is different; as is everyone is different on how they respond. Though always feels awesome to making a (BIG) difference to them in their time of need. Love, Light & Peace to you ALL. Sincerely, Steve 🙂

Re: Advice from other carers

smartyaligatorp — Sun, 03 Apr 2016 11:59:57 GMT

Hi Janey, I hear what you say. I cared for my husband prior to him losing his battle to cancer. I was in disbelief the majority of the time, feeling numb, anger, frustration, compassion, horror and of course total denial. Friends disappeared, never to return (other than for the funeral). Use this site and talk...talk til you don't want to talk any more. Love, live and hold every moment close. Life is so very brief and the time is so very fleeting. Hold close the love you have and for those that say you are whining or whatever - leave them - they aren't walking a mile in your shoes. Janey - you and your loved ones are in my prayers and thoughts. 2 1/2 years on and it feels like a lifetime and just yesterday all at the same time. x