We lost our internet connection from just after midnight on thursday till sunday morning and I’ve rowed with my hubby so much in that time. He feels all I do is spend time on the internet and don’t spend time with the children or him.
To a certain extent that is true but then I’m not sure how much time ‘well’ mums spend with their children or their partner either. I don’t want it to feel a ‘forced’ exercise - sort of ‘you must play monopoly with mum now as you won’t be able to in the futute’ scenario. They want to play on their playstation or play imaginary games with each other and if I ask if they want to do something with me, they don’t. I’ve tried to ask generally today what they thought about spending time with me and all that came up was playing board games sometimes but otherwise were happy with how we spent our time.
I do spend time with them but it is often just ‘normal’ things like going to Tescos with a different one each week or general shoe and clothing shopping.
Each evening,I either read or play nintendo games with them or just chat with them spearately or together depending on different things. They spend a lot of time ‘looking after me’ by making me cups of tea and fetching and carrying things for me. I help them with their homework and know what is happening at scouts and school far much more than my hubby does.
I take them to places but I can’t always sit and watch as the seats are too uncomfortable and my ankles swell if i can’t put them up.
Today, we’ve made bread together but I can’t watch them swim as the seats are too awful for me to sit in comfortably.
The children’ behaviour is awful at the moment but they know I’m not as well as I was and my swallowing is really getting bad quickly which scares them. The twins are very hormonal which doesn’t help and my youngest son is very like my hubby and is angry about everything.
in the evenings, my back hurts and I’m only comfortable in bed but hubby could join me as there’s a telly there and wifi access.
We’ve got money probs at the mo but it’s been down to me to sort it out and that is worrying the children and upsetting me that hubby won’t get involved or says he doesn’t understand.
I am spending more time on my own at home regardless of who is in the house but I’m also out meeting people and having lots of visitors.
Once i’m settled on vineralbine then hubby and i are going to go away for a few days.
I just felt so hurt last night when hubby was saying the children need me to spend more time with them and I need to spend time with him when I’m doing my best but just don’t have the energy to do too many days out or active stuff.
Should I be making extra effort or is hubby just getting upset as it feels as if the reality of our situation has only just hit him and is more of his problem than mine.
Think I feel better for writing it down and don’t know what sort of replies if any I’m expecting. I just think I am withdrawing because I’m too tired too interact.
thanks for reading
Kate
I cried when I read this. I al sorry Kate. I am in a very different personal situation but know how you feel. I get tired and I often find my husbands perceptions unreasonable at times. They don;t have it and we do. Its so hard. I don’t have children and always wanted them - in a way that side of thigngs is easier coping with it all second time round but my husband who I met after my 1st lot of treatment gets very frustrated with how I deal with it all. I’m not sure if this waffling makes any sense or is of any help but please don’t give up - even tho times are easily difficult. you need to do things at your own pace and he needs to realise that. He needs help too but is a man and too proud to alk for help from cancer backup etc with how he feels - pretty much like mine xxxx hope this helps xxxx
Dear Kate,
I have just waved off our visitors and logged back on.
This forum for us is our life line and we most probably do spend a little too much time on it. This is the one place we can be honest without being judged by those who don’t understand. By those I mean anyone who has not heard those dreaded words ‘sorry your cancer is now terminal’ Yes it effects family and friends and they have their own fears of being left without us, but we don’t know what the end will be like so we live with that fear for every precious second.
Healthy mum’s get on with life, washing, shopping, cooking, cleaning, doing homework, holding down a job. They are no different to us except that for us this could be our last day. I think we are put under an addition pressure and I don’t think it is fair, but life is not fair.
When my husband died (1986) my youngest was 4 I ran a very busy Manchester pub and had a teenage daughter with all the angst that that comes with. It was a massive juggling act and I did not know whether I was doing a good or bad job of holding it all together or if it would all fall apart. The McMilan nurse said it would be fine if I could carry on as normal as possible. You know what Kate she was right. That is all we can do.
Love Debsxxx
2nd attempt!!
Hi Kate,
It never ceases to amaze me that you always know how to reply to posts, I wish I just had the words of wisdom to give you some comfort. You always get it so right. My children are older than yours but when I was first diagnosed with cancer and having treatment I wanted to have ‘quality time’ with the kids etc, truth is they wanted to play with their friends and their games. I would be sad but as my hubby pointed out, that it how we wanted them to be, not feeling they had to be with me. I had dreams of holidays, all sitting round chatting and playing cards after dinner, reality check - they had dreams of going to Ibiza with their friends and getting smashed every night WITHOUT MUM.
You have done loads with your kids, more than most well mums, Eurodisney, fair rides, they will remember you as the most amazing mum I have no doubt.
Your hubby is probably hurting and the reality of your situation may well just be hitting home, I hope you have support close to you for this one.
I work for the Citizens Advice and sometime MacMillian ask us to help families with money worries, this can be for any reason. Do you have a CAB in your area that may be able to help you. We do things like phoning creditors, banks etc. Working out a budget plan. Sometimes just opening mail if people can’t face it. Benefit checks etc. Wish I lived nearer so I could help.
Sorry if this is just garble, I do wish you all the best and think of you and the Gobbygang alot.
Take care, you are doing a fabulous job as mother and wife. (Also a fantastic job at supporting others.)
Love to you and your family
xxxxxxxxxxxxxxx
Linda
Hi Kate,
Hope you don’t mind me butting in here but i thought I’de add opinion for what it’s worth. I’ve followed a lot of your posts and it always amazes me just how much you do manage to do with your family. Ok so you spend a bit of time on the internet , but if it relaxes you and gives you a chance to chat others in a similar situation why not? Surley all of us Mum’s are entitled to a bit of me time and especially those with a secondary diagnosis (hopefully not me - yet) I can only imagine how hard it is to try and spend time with the children, build happy memories and a lot of the time feeling cr*p and exhausted, seems to me you do a pritty fantastic job.
cheers
caroline
Kate
I have to say first of all how much I respect and admire you … oh admiration must sound so hard for you right now. But heck! I’ve followed many of your posts for quite a while and am staggered at the support you still feel able to provide for others.
So in my very small, humble way, all I can offer is a tiny bit of advice. I think it must be hard for your partner who will presumably going through his own fears. He must be thinking about the future and this will be reflected in his comments to you. This is all about fear and how to cope.
Of course using the internet is normal … and what child would expect anything else? But surely, your partner is so fearful he cannot go beyond the expectation that you will provide your children with what we can all perceive as the abnormal in the name of love and memories? It must be so hard for you both.
Not sure if that makes sense!!
Gill
Hi Kate,
Gosh, this is really difficult stuff, isn’t it? As others have said, it seems to me that you do far more with your family than many ‘well’ mothers. I would imagine (forgive me if I’m wrong) that using the internet does, in some ways, enable you to feel more ‘normal’ than the other situations that you face. I say this because it is something you can do from home, having first made yourself as physically comfortable as is possible for you, these days, and it allows you to go at your own pace, resting when you need to, and yet giving your intellectual capacity full rein (I’m guessing, here, that being in pain reduces your [anyone’s!] intellectual capacity, which must be very frustrating).
Not sure if I’m making sense here but, the bottom line is, I think this is about your husband’s issues, rather than your behaviour being inappropriate. It sounds as though (understandably) he wants to grab every possible minute with you (and is assuming the children feel the same), maybe to ‘top-up’ his memories in some way?
I think you are living the life you have, in a way that others can only wonder at.
With love,
Sass xx
Kate
People have a strange way of not saying what they mean. Maybe it’s time to ask him how he is feeling.
Normality is good and no-one including you and the kids should feel guilty or have regrets in the future about how they spent their time. Maybe he is having a bit of a panic and loss of control, maybe he just loves you so much and is now going through a very scary phase.
Anne x
Hi Kate,
it sounds to me as if you are doing what any “normal” mum does with her kids. I know what your hubby feels about you having to do more with them, but is that really fair? Whatever we do we won’t be around later to hold their hands and kiss away the hurt. Maybe bluntly said, but I have decided to let my kids have as “normal” a childhood as possible. I’ve thought them not to cling to me, as a result they are both quite happy to go to my sisters or my Dad and spend some time with them. It’s so easy to think I have to spend every minute I can with them. I agree, for me it is important. But I’ll be gone in the near future. What would happen to them if they are too dependant on me? I have to try and make things as easy as possible for them later. I have come to realise that quality time together is more important than quantity. The kids are not better off if we do spend all our time together if I am too tired to give them the attention they need. I think your hubby is going through a scary phase and is lashing out left right and center. This is such a hard place to be, for us, but also for those around us. When you have the time away together it might be a good idea to do some real talking. About your feelings but also about his, how he will cope without you etc.
Peggy x
Hi Kate
It’s understandable that you spend so much time on the internet, because it’s your escape, your lifeline and space to recall just how you are feeling and coping. Something that is really difficult to do with your family. While your internet was down that was your lifeline taken away.( Hope this makes sense) Also because you are surrounded by so many people who truely UNDERSTAND what you are going through. This means an awful lot to us. Sometimes I feel so guilty that I sometimes want to come on here rather than do something with my family, but at the moment it’s making me feel safe understood and supported.
I have read some of your threads kate and I think you have amazing strength and are a really devoted mother and despite all you are going through you are still there to support others. You have responded to my cries for help and made me feel better.So thank you.
These are such difficult times.
Take care Kate
Dee xx
Hi Kate
I’m sure a psychotherapist would find it interesting that at the moment when your hubby did have more time to spend with you (because the internet connection was down) he chose to pick an argument rather than using that extra time with you. I guess it shows how very hard he’s finding this time, and so its easier to blame the internet than to explore his own hurt and anguish and pain.
I often think I spend too much time on forums but I just think this part of my life with cancer…and I’d be the same if another minority ‘interest’ had been forced upon me. Mainly my partner doesn’t mind (and if she objects then I challenge some of her own internet addictions)though I do chat to her about people on here (she doesn’t read the site but does read my blog) and she’s curious about them and wonders what they are like. We often talk in bed at night about what’s happening to x, y and z…somehow our forum names make that more poignant. And occasionally when she meets someone…like you…its a bonus and helps both of us.
Don’t underestimate the emotional strain your illness is inevitably having on all of your family…in different ways at different times…you have been quite ill for such a long long time and that brings its own special problems as you know. I think you sound a fabulous mother and your children will carry all your good mothering with them for ever. For them and for your OH this time must sometimes feel like a strange limbo land…they know you are going to die and you may die very soon but you keep going on, defying the odds, doing stuff, living an active life with and without them…it must at times feel so unreal for them.
I only just picked up your text so didn’t warn people you were off line…sorry…you know I am neanderthal about my mobile and often don’t check it.
Love Jane x
Hi Kate
At lunchtime I posted (?) a long, long reply to your post but I think I could not have submitted it properly - it certainly has not appeared.
Oh, I am cross with myself…but I will have another go, a condensed version which may be better !
Firstly, living as normal a life as you can has to be good, I think. You do not know exactly when you are going to die, so therefore you have to carry on living as you know how.
My earlier, lost post said that I am in a similar position to you in that I have secondary breast cancer and children aged 13, 12 and 8 years. However, you are further down the line from me. I desparatley do not want my children to look back over their childhood and think Mum spent a large part of it dying. I want them to think Mum lived well, laughed, got cross at times and then right at the end was pretty ill and died.
They hated it when I lost my hair and had to wear a scarf and I think that it was because it was a constant reminder that I had cancer ( and it embarrassed them at the school gates). So. by carrying on relatively normally it helps the children.
As to your husband - the other day I said to my husband “you are coping really well with my illness”. He retorted straight away “how do you know I am?” well I said, you get up, go to work, you have not gone to pieces etc. and he replied that inside he had completly gone to pieces and he, in fact, is not coping at all. Your husband, Kate, is going through a terrible time. He is going to loose you soon and on top of that, he will be bringing up 3 children on his own. It is so scary for him. I know I am the one with cancer and at times feel so grotty and , lately in a lot of pain, but my husband is suffering too and you can see it in his face. Just as your husband is. And he must hate to see you suffer. It is so hard for every member of the family.
We live very normal lives in our house and everyday things carry on. But we are trying to have more breaks/holidays so we can spend time together. just the 5 of us. I know this can be expensive and is not an option for everyone but at the moment I have ‘sod it’ syndrome - I cannot take the money with me. However, it is quite possible to have days out, picnics etc which are cheap and we do that too.
Kate, try not to row. My husband and I row far less since the diagnosis and when we do row I feel so sad and think what a waste of time. Of course it is impossible to always be happy and lovey dovey but I so want to have a happy family life at the moment and create good memories. Probably not being realistic and I stil go on at the children for not doing homework, looking after pets and so-on.
Conclusion - live normally but add in days out as a family when you feel up to it.
Hi Kate, your post brought a wry smile to my lips because I have had exactly the same sort of conversations (arguments??) with my partner. He tells me that I spend too long on the internet, when I should be spending time with my kids - especially the ten year old. And he trots out that old “you should give them what time you have now, because you won’t be able to give them your time later” line.
The thing is, what the ten year old really wants is just for me to BE THERE. OK, sometimes she wants to make biscuits. But I have found it quite OK for her to do the biscuit making while I just sit and chat with her. Sometimes she wants to watch Deal or No Deal - that’s fine by me. Sometimes she wants to play on the Wii and she is more than happy for me to just comment occassionally on her outstanding performance (I am so rubbish at these games that it causes mild amusement then irritation when I actually have a go). A lot of the time she wants her friends over and I become just the sandwich maker and drinks provider.
Yes, I have done things with the kids that I probably wouldn’t have done if I weren’t ill - like go to the theatre a bit more. But it is not every day (or even every week/month). They are occassional treats that I hope the kids might remember and talk about when they grow up. They like doing these things, but I think they would tire of them if we were always jumping up and saying “what’s next?”.
The bottom line is that the kids just like me being around and available to them, I think. NOt particularly doing anything. And the kids are quite OK with my internet addiction. Often I sit next to my seventeen year old on the sofa and we are both on our laptops together and I might send her an MSN message and we will have a little electronic chat. My ten year old might sit next to me and help me with a word game. My son will want to show me something he has seen on Youtube.
I really haven’t, therefore, been able to work out what is up with my partner and what it is that he finds so annoying. I am sure it hasn’t really got much to do with the kids. INstead, I think he maybe sees it as me withdrawing from life and this worries him. I think he may see it as a sort of premature death, or a preparation for dying which in my book is rubbish, but I cannot just sweep away his perceptions.
It’s true, I DO spend a lot of time on the internet - but not just breast cancer sites. I like to use Facebook to keep in touch. I play word games. I often research things that have taken my interest. I listen to Radio 4 Listen again, or watch something on BBC iPlayer. I point out to him that (with the exception of some remarkably bad and addictive programmes) I am not really intersted in the telly. And I am no more companiable sitting next to him watching a football match or the Masters golf than I am sitting next to him playing a word game. But he still huffs and puffs every time I pick the computer up.
I hate feeling guilty when I am doing something that I think feels OK, so most of the time I try to just ignore him and put his “Deirdre on the internet” phobia down to some deep seated fear that my husband can’t talk about but that he feels the need to communicate through telling me how to live out my days. Occassionally I will point out to him that it is ME that will have to account for how I spent my time when I meet my maker and telling him that a response of “I did what my husband said I should do” will not cut much mustard on the big day.
For what it’s worth, I think you have found a really healthy balance between being there and doing stuff and your kids seem to be really OK about it. You might have the hormonal stuff going on with the kids - but that’s normal. Yes, they may be a little bit afraid if you retire too far into the deep recesses of your bedroom and don’t let them in. But I am sure there is room for you to snuggle up in front of Dancing on Ice (or whatever floats your boat) with them and for them to feel that you are still theirs. And I know that you still are theirs, and still will be, until you draw your last breath.
Please don’t feel guilty or upset. There is no model of the best mother - certainly not for the situation we find ourselves in. You just do the best you can, balancing your needs with the needs of others. In my book, you are doing just fine.
Love
Deirdre
I often wonder with these objecting ‘other halves’ if it is like having 3 or more people in the room and one of them carries on a whispered conversation with another. Or 2 people in a room speak a different language and so they are excluded if they cant join in. They find it hard to cope with the idea that you are there and yet not talking to them. They feel left out! Does that sound a bit muddled LOL. I suspect they are :).
Dawn
Oh Kate. As others have said you give such wonderful advice and support to us all that it’s hard to find the right words to help you.
It does sound to me as if your husband is struggling with his own feelings and perhaps in a way is jealous of the support and sharing you get from the internet that perhaps he wants for himself but as often men don’t or won’t talk or share their feelings.It sounds like he’s just lashing out at you out of his own fears - he probably doesn’t mean to direct it at you. It has always sounded to me as if you do lots with your children and husband and you are always concerned with how and what they are doing. Perhaps it also comes from his fears of how he’ll cope with the children on his own. I’m quite sure you are doing nothing to warrant the anger - it’s probably just stemming from fear.
I don’t have children but I’m sure to them it’s about you being mum that’s more important to them than the actual doing of things with them and for them. It’s so hard for you all but you mustn’t put any blame on yourself at all.
I hope your time away with your husband might help iron out a few things together and help him to open up calmly to you.
Hope your scan went ok today and thinking of you for the results later this week.
Anne xx
Oh Kate, I really feel for you and your hubby. Internet for us is never something to argue about but thats because hubby is a computer analyst for an American company so has to work most evenings. Most evenings we can be found sitting side by side on the sofa with our laptops!.
Hubby is really good at hiding how he is really feeling though and doesn’t often break down in front of me. He had a cancer scare last week and we were both terrified as was our son. Too many memories. It looks like Hubbys is just a cyst though but we were so scared to talk about it that we just picked fights over the silliest things rather than face up to what we were really feeling. I got him to go to counselliing once with my BCN but he refuses to go again which is a shame.He’s similar to your hubby in that he won’t talk about it when he is hurting or just having a bad day, just bottles it up constantly. Son is just the same. They are so alike that they clash constantly and I worry so much about how they are going to get on when I am no longer around to referee.
I am on the internet a lot -i would say constantly from 9 in the morning till 9 at night. It helps me to know someone is there if I am in need. As Jade Goody said the other night ‘Its easier to talk to a stranger than your nearest and dearest’. Hubby heard that and got really upset but it is sooo true.
Thinking of you Kate and your family and sending best wishes
Jools
I think Kate it is just really tough for us and it’s tough for our partners too.
My husband and I have just had a rough few days, and it’s so much harder to get over, not the same energy level at all anymore. I try to remember that for men, anger is hurt.
We have just finally had the ‘what’s it all about discussion’ and basically it’s all about grief and loss and working too hard.
It’s hard on everyone, but I always remember I get all the attention he get none, mind you I get all the pain too!. He has to hold it all together work, more work when he comes home, more jobs at the weekend and everywhere he looks is work.
The one thing he always says is that it’ll be alrught for me when I’m dead, because it’s over, but he somehow has to go on without me.
I don’t really like to get into too many intimate conversation because it hurts too much, and I know it’s the same with him. Nevertheless we do, because he is also my best friend.
I’m sure by now Kate that you have probably resolved your differences, and it’s a great idea to go away for a while together.
Take care Kate