Living life in limbo

carls
New Member

Living life in limbo

Hi i am a first time poster so please bare with me. I am Carly, wife, mum of three, Nini to one gorgeous granddaughter and student. Oh and I forgot living with cancer. I am on day three post op after my third operation as I type.

I was first diagnosed in August 2017 after a biopsy on a legion on my left side of my nose near my eye with Bowen's Disease. After a five months of waiting I was seen at the Peter Mac Cancer Centre in Melbourne and had my first surgery to remove the legion on my nose and one on my chest in February 2018.

Unfortunately I was misdiagnosed and did not have Bowen's disease but had a passive aggressive Basal cell carcinoma on my nose/eye and a melanoma on my chest.

I have had three surgeries all in the space of five weeks and I feel like I am just living life in limbo. Time is passing but I am just not moving.

It has been very stressful on our family, the travel from North East Victoria to Melbourne, my husband has had to take leave from work and now has no leave left so that adds a financial burden..paying the bills, mortgage etc as I am a student. And our daughter is studying year 12 and all this has placed an addtional burden on her and that I so never wanted for her. She is just meant to be focusing on this important time of her life not worrying about her mum.

I feel like I am being a burden to those around me and just don't know where to turn to for advice or help.

When people talk about cancer there is a much bigger picture that is just not discussed and the extra pressure and it puts on all the those around you. Yes, we are of course going through cancer and trying to deal with all the facets of this disease but it is just so much more that is just left unsaid.

Any advice for a first timer trying to navigate and get through limbo and hopefully out the other side.

 

2 REPLIES 2
Budgie
Super Contributor

Re: Living life in limbo

Hi Carls,

 

You are going through a very stressful time.  You should look into Centrelink to see if there is some financial support you or your husband can receive.  Also, you should get in touch with your local Community Health Nurse as I'm sure he/she would be able to point you in the right direction for the support you need, as well as support for your daughter.

 

You are not a burden to the people who love you.

 

Take care 

Budgie

Potsyannie
Occasional Contributor

Re: Living life in limbo

Hi Calrs, I am a first timer too. I had a metastisised melanoma which sent its little friends to my brain, one to my liver and one to my lung.

I know how you are feeling as I cannot work - ever again according to the medicos, can't drive, but luckily I can do everything else for myself. I feel that my daughter has taken on such a lot and I feel guilty about that. She drives me everywhere, sits in on all my appointments and gave up her family life for me when I had surgery to remove the largest tumour... I keep telling her to take a week off from running me around, but she keeps insisiting that she doesn't know how much time I may have, and she wants to spend all of her time with me. I still feel guilty as I know the pressures she has as a single mum to three beautiful girls. 

She also worries about her mum, and even though it is hard to accept, I have to. This has been such an awful time for our daughters, not knowing how everything will turn out.

I give thanks that there is such concern, so much love, and caring that our children show us in this time of real need. Otherwise I think I would feel so alone in this challenge. Their confusion and pain is hard to imagine, but it is real. I imagine how I would feel if I were in their shoes, pretty heartbroken and confused..All I can do for my family is tell them that this is what life had planned for me, I have to meet this challenge, and I need them to encourage me, not feel sorry for me, but to be my rock. I feel that by taking on 'the rock' role, my daughter feels stronger, feels that she is accomplishing something really important, and my hope is that this deminishes her feelings of uselessness I know she had. I set her that goal to make us both proud, and it really has helped us both. I am recovered from surgery enough so that I don't need her to help me as much as she would like to. I feel great actually, the only thing I am not supposed to do is drive, as brain tumours may cause seizures or a stroke in some people, but I do ask her to do things for me because it makes her feel very useful. I keep calling her 'my rock 'to keep her importance and strength strong. Even though its now 3 months since I had surgery my daughter arrives almost every morning to my place just to see if there is anything I would like to do, or to go to, this must be so exhausting for her!  I still feel guilty... Maybe we just can't help that, maybe our daughters can't help it either.

I hope you are able to find a strategy for your daughter so that she can succeed with her year 12, it must be really stressful for her to see you go through so much. I wish you the very best of luck too! 

I also have dealt with BCC's, mostly on my face and shoulders, but the melanoma was on my belly. 

 

I really hope you can find some financial assistance while you are recovering - my daughter applied for disability pension for me as I had no income at all. I live alone and have always worked. Now all of a sudden I'm told I will never work again, won't be capable to perform any function...I can kind of understand that because I worked in finance, and I wonder if I could do that any more after this.

Keep in touch if you would like to, Potsyannie

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