Carers only

Looking after a loved one with cancer? This is a safe and supportive place to share your worries and emotions. Please remember when posting that this group is for Carers only.

feeling alone

shardc
Posted by

HI everyone.

I have just joined the group and am looking for some support in coping with my wife's recent news that her kidney cancer has rearedit's ugly head again after what we thought to be successful surgery and we have just received the news that although treatable it is ultimately not curable. I hope that someone here can relate to how I am feeling right now and help me to understand my feelings too.

Thank you in advance

panic
Posted by

Welcome to the club that no-one ever wanted to join.

I can certainly relate to your circumstances. My wife was diagnosed in May 2012 with kidney cancer and, after its removal, we had 18 month of relative normalcy until it reared its head again with metastases to the spine. Since then, there have been 2 further outbreaks (paratracheal nodes and three new small tumors in her upper spine). Her cancer, like your wifes, is treatable but incurable, although the gap between the two is narrowing.

I can offer little concrete advice on understanding your feelings as each and every instance of cancer is unique, and everyones (patients and carers) journey down this horrible road is equally unique.

From my perspective, I can offer the following;

  • It's OK to get angry, but get angry at cancer - not at the person that has it.
    Cancer is an insidious bastard that has a habit of getting in between two people that love each other.

  • Your relationship (both physical and emotional) with your wife will change.
    Learn to adapt.

  • Your relationship with yourself will change.
    Make time for yourself.

  • Your relationship with the world will change.
    Stay in touch with people. It may become hard to do without compromising your time with your wife, but it is bloody important. 

  • Learn about cancer, its treatment and how to best care for your wife.
    The unknown is the greatest incubator of fear - don't be afraid to ask questions. Don't let doctors drown you in technical terms - ask, ask and ask again until you and your wife understand what you're being told. 

  • Become meticulous.
    I don't know how organized you are now, but I know how organized you will need to be. Managing specialists appointments, GP appointments, nursing appointments, treatments appointments, prescriptions, medicines, etc. will become central to your lives. A calendar app linked to all your devices will become your constant companion.

  • Be prepared to step outside your comfort zone.
    You may end up the lord of the laundry, the king of the kitchen or (but most likely and) the surgeon-general of the supermarket. You may need to absorb some of your wifes roles but always try and be aware of not diminishing or dismissing her in the process.

  • Be prepared to be lonely.
    Learn to like silence and your own company.

  • Take pride in how cancer has changed you.
    The only positive I've ever found in cancer is that it forced me to become better.

  • Be hopeful.
    Never give up on your wife.

  • Be realistic.
    Never give up until it's the right thing to do.

  • Look forward to tomorrow.
    No matter what happens, the sun will rise tomorrow.
    As will you.

I hope this is of some assistance to you and that you and your wifes journey is as enriching and as comfortable as it could possibly be.

Hang in there buddy.

Peace,
Ewen :-)

The day after your journey ends, the sun will still rise.
As will you.
Bodach
Posted by

Hi and my welcome also to the online community and I'm sorry that your circumstances have found you knocking at our door, please be assured that the door is always open for you to come on in for a chat, to rant or rave or, if you're having a really bad day, to let off steam we all understand that feeling and that we need to do it so feel free to make this you safe haven where you can do it.

Following on to the excellent advice from  and his topic of being organised Macmillans have an excellent piece of kit you maybe interested in getting it's the Macmillan organiser it's free to members of this forum and has lots of information and places to store information. By pressing on the green text this will take you to a new page where if you enter your details as requested you can set up an account to order, it's well worth getting a copy.

There will be some days where you won't know which to turn and feel you need to take a break and get out of the house on your own this is perfectly okay to go out for a walk, meet friends for a drink anything you feel your need to do, you'll feel the better for doing so and it's part of looking after yourself if you're tired you'll become irritable and you'll not be running on all cylinders, we always suggest that carers do look after themselves as we get so engrossed in looking after others we neglect our own wellbeing. It is okay to take time out every so often.

We also have another excellent group you could join Supporting someone with incurable cancer and I invite you to,  when you're ready, join the group and introduce yourself to the very friendly members who being in the same position that you've found yourself in will be willing to share their experiences with you and give you some support and advice when you need it.

We have lots of people that can give you advice on a host of things and you're more than welcome to make use of all the services that Macmillans have to offer.

Ask an Expert

If you need a one to one chat the telephone support team are available between 8 am and 8 pm every day of every week to take your call and you chat and ask them questions but mainly they are there to listen to you and the number you need to call is 

0808 808 0000

Please do keep coming back to us and keeping us upto date with how everything is doing with you and your wife.

Remember to be a good carer you must also be a carer to yourself and have the ME time when you need it, be kind to yourself.

Ian

By clicking on any of the green text above will open up new pages for you.

With a Stma Care and Management Certificate 

My Groups ● St●ma Support ● Bowel ● Carers ● Anal ● Family & Friends ● Bereavement ● Diagnosed at a Young Age ● Parents of Young Children ● New to the Community

You can call The Macmillan Support line on 0808 808 0000 every day 8am to 8pm

What is a Community Champion?

 How to update your PROFILE

The Bodach is LIVING WITH A ST● MA

shardc
Posted by

Hi Ewen, Thanks so much for taking the time and trouble to message me. It has been a great help and comfort to read your comments and suggestions for coping. After s paticularly bad day yesterday when I decided to take refuge here I have found that just sharing my feelings and concerns both here and with my wife has given me fresh positivity to deal with this damned illness of hers.

I'm sure that there will be other "bad" days in the future when I shall be in need of somewhere to vent my feelings and at least now I know where that is!

Thanks again for your support

Regards

Dave

shardc
Posted by

Hi Ian

Thanks for your response to my message yesterday and for the very useful information and tips that you and "panic" have given me. They have already proved extremely timely in getting me back on track and feeling much more positive about dealing with the situation in which my wife and I find ourselves.

I'm sure there will be more "off days" in the future but at least I now know where I can go to let off steam and get myself back on track!

Thank again

Dave

panic
Posted by

Hi Dave,

I am so glad that you said that you have shared your feelings with your wife as well as on these boards. As I said, cancer has a habit of becoming a barrier between people. Undoubtedly, before the cancer, you and your wife talked, discussed, argued and fought (like all good couples do) and there is no reason that that should change.

You may have the worlds best oncologist, specialist or nurses, but the two most important people in this fight are you and your good wife.

There will undoubtedly be more bad days in your future and the bad days may well outweigh the good. When you feel it's getting a bit much, I can't think of a better place to vent, rave, rant or scream than these boards. You're among friends here and we're all walking the same path.

Peace,
Ewen :-)

P.S. Thank you for your friend request. Please feel free to message me at any time, If I can help, I'm only too happy to do so.

The day after your journey ends, the sun will still rise.
As will you.
GriffinKeeva
Posted by

My partner has just had a diagnosis of myelofibrosis (aggressive) and I cant cope with the idea of losing him.  He is my world and a future without him is just unthinkable.  He is suffering lots of the symptoms and it breaks my heart to watch him deteriorate.  I have 3 grown up children who do try t offer support but they have their own lives too.  So there are many times I just don't know who to talk to.

Any help/support or advice about al the feeling that I am experiencing in trying to face this imminent loss would be much appreciated.

shardc
Posted by

Hi.

I am so sorry to hear of your husbands recent diagnosis. Like you i am caring for and watching my partner of many years who has recently had a diagnosis of in curable kidney cancer which we had hoped was cured following radical surgery 3 years ago and although the thought of loosing her terrifies me I keep finding myself telling myself that I have to try and remain positive both now and in the years to come as it is what my wife would want for me. She would be gutted if she thought I was going to turn into some sort of recluse once I am alone and I think it's an openness to talk to each other about the future that I find helps me more than anything!

Even with a close family around you I know from experience that you will often feel alone and lonely and that those close just dont feel the right people to unload your worries and feeling onto and that is why I would recommend this site as a safe place to share those feeling which I'm sure we have all experienced at one time or another. So if you ever feel like talking or even screaming and shouting there is always someone here to listen

Best wishes

Dave