Don't know what to do

[Buzzard]

Hi Folks,

It took me a bit of time but I finally found this thread again.  Thanks for all the kind words.  I just feel I am living a life of highs and lows which kind of reminds me of my teenage years when, in retrospect, I think I got quite depressed, which is something that I really don't want to return to.

It can just be a bit difficult when I seem to be getting pulled from pillar to post at work all day and then when I get home I am getting asked to "Do this, do that" along with being chief entertainments officer.  I do realize that my wife may not have spoken to anybody since I left for work in the morning so I can understand her frustrations, but sometimes after a fraught day all I need to do is sit down in a chair and read a book or something.  My wife does actually keep herself quite busy during the day, she is a enthusiastic gardener and is fortunately off work over the summer so she can find plenty to keep herself busy. She does also has a circle of friends and gets out to see other people during the day, but it doesn't happen every day.  She does keep busy mainly to keep her mind off the treatment, and I get the feeling from her that if I do not keep as busy as her then I am letting the side down, which can be difficult after a hard day at work.  We are now into the particularly difficult week, leading up to the next treatment and she is already fretting about all the different drugs she will be taking along with the treatment.

Anyway its not all bad we are both on a bit of a high at the moment because on Monday we witnessed our Son's graduation.  So we did the ceromony, and had a meal afterwards with his girlfriend's family.  With the happiness of the day and talking to others it took the pressure off me a bit, although getting to it was a bit fraught.  Next weekend we have a christening to go to in a town about 2-3 hours drive a way so I am suggesting we make a weekend of it and visit a national trust type garden or something similar on the other day.

I suppose my problem is that we go out and do all of these things when the drugs allow but then get thrown back in on ourselves when they don't.  I know my wife's intention is to make the most of the moments that she can which puts the treatment out of mind, but that does mean that treatment day does come it comes crashing back in on us when it doe hit.

Anyway bye for now.

[Jeff]

Hi Sarahm1
My wife and daughter are coping, as we all have to. No one is out of the woods yet and we shall see what the future brings. Carers suffer as people get better. That complete focus is no longer necessary, and you find gaps appearing in your life. Those gaps can bring depression and mental problems, s they have done in my case. Counselling and positively undertaking new activities is a help. Getting and giving space to affected family members is also important. We all need time to ourselves. All our journeys are different, as are we, but it helps to talk to people like you on this post.

[Sweet-Gemzie]

Hi Sarah

Mum started her treatment today I will let you know how it goes.  I have had the same dark thoughts of what is the point in all if this but I am of the thinking it will get worse before it gets better.  I have found comfort reading some of the inspiring stories on here and I am hoping the chemo pushes her cancer back and they can manage it for as long as possible.  Dark thoughts are normal its just one of them things we have cope with through this awful journey.  I feel guilty having to go to work and carry on with my life whilst my mum is so ill. I want to be there to care for her but I have a job and a partner and I think to myself "why me?"  Which I know is selfish as its my mum having to live with this.

Jeff and Buzz your not alone and being on here reading your thread I have the same feelings.  People are initially very sympathetic but as time goes on know one wants to talk about it and I think to myself "who is going to help me?".

I am just greatful for this forum.  Sarah let me know how you mum gets on.

Gemma

[sarahm1]

I wasn't sure how to reply individually so I thought this would be the easiest way!

Sweet-Gemzie ~

Let me know how your mum gets on and how she is coping with everything.  My mum had her first chemo session last Monday 7th July.  She said the session itself was fine and the nurses etc were all lovely.  I flew home Friday 11th for a few days and it was very good timing as Friday morning through to Sunday afternoon she was very very ill.  It shook me a bit to be honest.  It probably sounds really stupid and naive but I didn't expect her to be so sick.  Obviously she is having chemo so I knew it would be bad but it was unexpected still.  In some of the darker thoughts I just wondered what is the point?  She is not going to be cured from this.  She will never be cured.  The chemo is supposed to "improve quality of life".  Her quality of life did not look improved.  I don't know.  I'm just having a very nagative week mentally and need to pull myself together!!  I understand what you're saying about seeing your strong mum so weak.  Mine is exactly the same, the rock of the family, and I could hear her crying every night.  It's so selfish to say but it just broke my heart.  I hope your mums treatment is going better?

Jeff~

Apologies for not replying sooner.  I'm sure we are all the same - busy with everything!  Yes, I feel the same about coming on here.  I know why I feel what I do and what am I expecting to happen by talking on here about it.  And yes, I agree, I also selfishly need to talk about how I feel.  I need to tell people how I feel and I need to know that there are other people out there like me who feel the same/similar to me.  I can't imagine how hard it must have been to have your wife and daughter sick at the same time.  Especially as the "man of the house".  How are your wife and daughter doing now?

Buzzard ~

You are absolutely not "hijacking my thread".  I am so glad that the title of the thread is what made you read it.  The whole reason I came on here was to see if there are other people out there who feel as confused and sometimes hopeless as I do.  I completely agree that it is very hard to be a family member or partner of somebody who is seriously ill.  I feel selfish saying that I am sad or tired or depressed because I think that I don't have the right as I am not the one who is sick.  I don't want to talk to my mum about it as she has so much guilt already just bveing sick that if I told her how bad I was feeling it would make that so much worse.  But then I also worry that if I don't tell her how much the whole thing hurts that she will think I don't care.  It's horrible.  I try to talk to friends but I try so hard not to get upset by it that I worry that I come across as clinical and again as somebody who doesnt' care about her mum.  I feel guilty all of the time because horrible thoughts come into my head.  For instance - my husbands mother had cancer last year and she beat it.  I am so happy for her and love her very much but I also feel angry that she is 20 years older than my mum and she is going to live and my mum will not.  Why my mum and not her?  It's terrible and I can't believe I'm saying it out loud.  I feel bad enough just thinking it 😞  I think that everyone on here though can be honest and say their worst thoughts because we are not here to judge one another.

[Mel66]

Hi Jeff & Buzzard
I was only diagnosed less tu han 2 months ago and came out of hospital yesterday following MX, ANC and reconstruction, but I am acutely aware of the effect that this has had on my partner.

From the patient's point of view, there is a fabulous support network, both within the NHS and outside of it but I do think that the effects on the partners and family are greatly overlooked. Additionally, we women are very good at expressing our emotions and usually have a good support network of friends who we can really talk to. Although many men are good at this (including my partner) unfortunately, as my partner has discovered, most men really struggle to do this.... leaving them feeling under supported and adrift.

It would be good to see more in the way of support networks for the families affected by BC, much in the way that there is for the families of alcoholics.

Meanwhile, there is this fabulous forum where you can be free to talk and know that there are lots of people who really do know what you are going through.

Hugs. Mel x

[Jeff]

Hi Buzzard
Not in a position to respond fully to your comment, but will come back to you. However, with regard to emotional support I regularly see the phycologist in a local Maggi's Centre which is very helpful. Clan have counsellors as well. Both organisations are very good. Have you tried either of them? If not I suggest you go and see them, both you and your wife.
Hope you find this helpful, and I am not going over territory you know.

[June_BCC]

Hello Buzzard

Maybe you could call our free helpline and talk through your concerns with one of the staff who are there to support you.  The number is 0808 800 6000 and lines open 9-5 weekdays and 10-2 Saturday.

Best wishes

June, moderator

[Buzzard]

Hi Jeff,

I do not even have half your problems and I am struggling to cope as a carer.  My wife was diagnosed with breast cancer earlier this year and is currently part way through the whole gamut of treatment.  We have had the surgery, and are currently going through the chemo.  I cannot fault the NHS or people around us for the sympathetic treatment my wife has had.  However, somehow there seems to be little comprehension from the outside world that although obviously as a partner you are not going through the same physical journey you are still going through the same emotional journey as the patient.

I go to work, and on a personal level my boss was initially quite sympathetic, but I am aware that I have not been functioning as effectively as I could have and my work is now being closely scrutinised.  When I get home my whole life revolves around making sure that my wife’s world has everything she needs.  There is a distinct lack of anybody to talk to.  One of my wife’s colleagues is very friendly and willing to talk to me but I am a bit afraid to open up to her about how I feel deep down because I suspect it will only get back to my wife and she will feel the guilt pile back on her shoulders for disrupting my life.  That is a difficult circle.

Most men do not know how to talk about a partner with cancer and will shy away from any conversation that I need to have.  I do have a female colleague who does make a good listener but talking to her has left me rather physically closer to her than most wives would generally tolerate.  There is the whole can of worms around emotional support from a (slightly) younger woman and all the (well founded) physical insecurities that breeds in one’s (unwell) wife which I really don’t want to open.  There have been many moments over the last few months when I would have been quite happy just to switch my life off and let it restart when all of this is over.  I do realize that is a slightly impractical goal.

All of the above comes across as a bit heartfelt and I apologise if it is hijacking somebody else’s thread but I just felt a need to write something.  I guess I am just coming back to the title of the thread and don’t really know what to do myself apart from just keeping buggering on until life becomes a bit better again.

[Jeff]

My wife was diaganosed with breast cancer in September 2013.  Following that she had had to have heart surgey to facilitate her treatment.  Since then she has had chemotherapy, a mascetomy and radiotherapy.  We had a difficult time with the NHS, to the extent of changing teams to one in which we had confidence.  My youngest daughter was also diagnosed with cancer within that period, and had to have a hysterectomy.

Our lives have been so full of events, and the routines of care, that they became part of us.  Now we are out of the treatment I, as husband and father, am finding it very difficult to cope.  I understand why that is, so I do not really need to be told. So what am I saying?

Well, I am just saying how I feel because I, selfishly, need to.

Would like to know though from others in the same situation.

[Sweet-Gemzie]

Hi Sarah

I have just got back from visiting my mum she has a treatment plan and is due to start chemo in the next 2 weeks.  When I arrived she has lost a lot of weight her mobility was poor and she could not keep her food down and it was awful for me to see her like that.  My mum has always been the strong one and to see her so weak and frail was very hard and upsetting and it is hard not to think the worst.  I know my mum is scared and like your mum she is finding it difficult to talk about it but I can see it on her face.  It is important to keep positive I have showed my mum this forum with some of the inspiring stories on here and that seemed to perk her up a little.  For me I feel guilty that I can't be there all the time to help look after her.

The oncologist was very postitive and stated hopefully once the chemo starts mum's symptoms should improve and I am sure it will be the same for your mum to.  This disease is so cruel I never thought her cancer would return but it is important to take it one step at a time.  Let me know how your mum gets on thinking of you both.

Gemma

[sarahm1]

Hi Lakeslover and Sweet-Gemzie,

Thank you for your lovely messages.  It is reassuring to know that other people are going through similar things.  My mum starts her chemotherapy on Monday so I am going over on the Friday for a few days to see how she's doing.  She is putting on a brave face and most days she feels really strong but I know that she is scared and I wish she knew that she can talk to me about it.  That is what worried me the most.  It really hurts me when she says how scared she is because I just want to make everything ok for her.  I think she knows how much it hurts so she keeps everything inside instead.  I am trying to encourage her to talk to me or someone on a forum such as this but she just tells me she's ok.

She is losing alot of weight as everytime she eats it is making her cough until she is sick 😞  I am terrified for her and just want to be able to do something to help.  She is coping with the idea of losing her hair amazingly well.  She was offered the cold cap treatment but decided against it as she want to have control of her hair loss.  I really admire her courage.

Sweet-Gemsie - has your mum been given a treatment plan yet?

Lakeslover - How is your husband now?  Well I hope?

[Sweet-Gemzie]

Hi Sarahm1

I know how you feel my mum had breast cancer 5 years ago and has just received a diagnosis of secondary breast cancer to the bones, liver and lungs. After 6 trips to the GP over the last 5 months with joint pain they finally did an X-ray which found fluid on her lungs. I am so angry at the doctors who kept fobbing her off.

I live 200 miles away from mum we haven't got a treatment plan as of yet but I know il be commuting up making sure she is ok. I don't think the diagnosis has sunk in with me yet I am still very angry at the doctors. I don't know what is to come or how they will treat but I'm sure your mum will be strong and will fight it just like my mum.

Gemma

[Sam_BCC]

Hi sarahm1

I am sorry to read of your Mum's diagnosis and the difficulties she has experienced.  As well as the support you recieve here I have given below the link to the secondary support page, which provides lots of information on secondaries and the support avaialble.  

http://www.breastcancercare.org.uk/secondaries?utm_source=Homepage&%3Butm_medium=help_you&%3Butm_cam...

Also it might help for you talk things through with a member of staff on the helpline.  Here you can share your thoughts and feelings with someone who will offer you a listening ear as well as emotional support and practical information.  The number to call is 0808 800 6000 and lines are open today 10 to 2pm and weekdays 9 to 5pm Monday.

Best wishes Sam, Facilitator 

[Lakeslover]

Hi,

Firstly there is no right or wrong way to feel about this situation. It is tough, and it will take time to come to terms with it.

I'm not a secondary lady and I am sure others who are will be along soon. But I think the bit that is confusing you most is that whilst secondary breast cancer is not curable it can be treatable. Some people will live for years with secondary cancer. Obviously no one knows how individual tumours will react to treatment, so try and just take each step as it comes and don't look too far forward.

I can understand your feelings about the delay in diagnosis as it took doctors a year to diagnose my husbands lung cancer....also telling him his cough was COPD. But try and put that behind you if you can,and focus on your mum and helping her through this.

Even from a distance you can be a real support, just be there to listen when she wants to talk and ring her every so often to see how she is.

Remember you need support too, and make sure you have someone you can talk too when you need it. You are very welcome on any of the threads here too and you will find lots of information and support.

Finally there is lots of help available here. If your mum uses a computer it might help her to join and talk to other secondary ladies too.

[sarahm1]

Hi all.

I am not sure why I am on here or what help it can be, I just know that I am struggling with how I feel.

My mum has recently been diagnosed with secondary breast cancer that is in both lungs, her bones and her lymph nodes.

She had breast cancer when she was 35 and then again at 44.  She had radiotherapy the first time and a masectomy the second.

She is now 58 and has been cancer free for 14 years.

For the last 2 years she has had a cough that wouldn't go away.  It has been getting steadily worse and she has been persistantly going to her GP who continued to stoicly diagnose her with COPD even though her symptoms did not match up.  Eventually, after 20 months and 16 visits to her GP my mum had to pay to see a consultant privately.  He immediately sent her for a CT scan due to her history.  This scan showed up the cancer.

I just feel so angry that she has spent the last 20 months getting sicker and sicker and starting to believe that the cough was "all in her head" or "due to stress" as her GP told her.  I know that anger is a wasted emotion but I just can't get rid of it.  I think it's probably easier than feeling the pain maybe.

I live in Ireland whilst my mum is in the UK so I am trying to commute with work, baby etc.

She is starting Chemotherapy in a couple of weeks but I am confused.  I thought that secondary breast cancer was uncurable?  If this is the case, why would the docs recommend high-dosage chemo?  My mum is no fool and she is under the impression that she can fight this.  I would've thought that if it was terminal the docs would have told her this?  I am struggling to accept the diagnosis but I am now worried to get my hopes up for a cure.

I am just not sure how I am supposed to feel and react to this whole thing 😞