I know exactly how you feel, I think our husbands must think alike! Mine just wants to carry on as normal, in fact he’s off to Menorca next week for 6 days with friends for a golfing holiday. I’m really ill, can’t do much for myself (have a collapsed vertebrae so my posture is awful and I can’t support myself and my breathing is affected so if I walk upstairs I have to sit down for 5 mins to get my breath back, not to mention the fact that the cancer has spread to the mesentery surrounding my stomach and I can eat very well and constantly feel sick, and yes the constant tiredness). I have 3 children, age 10-17 who need help and I have to feed. My husband is just burying his head in the sand and not even considering how I’m going to feed the children next week let alone myself!!
I do however get Carers help 3 hours per week which was arranged through my local hospice. This is very helpful with housework but I think next week I’ll have to get help with meals.
Debs, I’m sure you are not giving up but sometimes forward planning will help put your mind at rest. I’ve been thinking along the same lines as regards funeral directors etc.
Well, that’s enough of a moan. Take care everyone.
Just to say I am thinking of you Debs, and praying that your energy levels will improve. Hope that Deirdre and Spike also see an improvement in their symptoms. I wish they could find a cure for this sh@@ty disease soon.
God Spike I do feel for you. Really your husband should cancel this golfing holiday for your sake and his. This is totally unrealistic. I do hope you are not being ‘brave’ in order not to feel guilty.
The pressure this could put on your spine is really not safe. Sorry but i think you should get him to forget this break of his - because frankly it is just not reasonable, and the price you may pay is far too high.
I know what you are saying and in some ways I probably am being brave in order not to feel guilty. I have today spoken with my Macmillan Nurse with a view to her having a discussion with him, but this isn’t going to happen before he goes. I really don’t think there is anyway that he will not go but I need him to realise the seriousness of my situation and me keep telling him just isn’t sinking in.
I have however got a strong network of friends who are going to be cooking me meals and hopefully do the washing and ironing and taking my youngest to school.
hi spike i agree,
i desperately want to help… if you are nearby i will. i was so angry last night i couldn’t post as i know i have no right to comment but you and your health and well being is the main priority here, not just for you but for your children. i do hope that someone can get thru’ to him because none of this is helping you deal with your treatment etc.
you are really amazing to keep going and i’m not surprised that you have a network of friends who are willing to take the strain.
with love and wishing i could do something,
lenny
xxxx
ps debs i do hope and pray that you have had a comfortable day, you are in my prayers
Hi Spike, Have you had any dialogue with your husband about his golfing holiday while you are so unwell and in need of his support? What did he say? I cannot believe he could do this to you especially as you have children to care for too. My heart goes out to you. He needs a talking to…Have you no close male friends who could have a word with him to see what is going on in his head? Is this normal behaviour for him or is this out of the ordinary? Lots of love, Val. If you live near Edinburgh I would help out. Take care honey.
Hi everyone,
Spike I know where I would be placing one of his golf clubs! It is really difficult for our partners how can they carry on a normal life when they have yo look after us. Ian isn’t into blokie pack persuits so I dont have to worry about fishing, golfing trips. I do worry that he needs to get out more but he is the other way and won’t leave my side, even our dogs walk has been shortened.
Well I am off to have my bloods done (I have it done in chemo) so if it has improved I will get my vinerolbine, fingers crossed.
I will post later have a lovely day everyone weather here is dry sunny and bright.
Love Debsxxx
Spike,I would say, if your OH can’t, or won’t, acknowledge the seriousness of your situation, then take advantage of his absence…
Have meals delivered. Have a week of junk food if necessary (and if you can safely have it yourself) and eat off paper plates with plastic knives and forks.
If you do get that help with the ironing, get them to do everyone’s except his. Ditto his washing.
And so on.
Hope that you - and Debs - are feeling better soon.
Hi Spike - this is my very last word on this - after all it is your business. I just wonder if both of you realise the pressure you will be placing on your children, - after all presumably kind hearted neighbours will not be sleeping at night, or will be there all the time.
I recall when I got pneumonia, my husband left me in the morning with a sore throat - not much more - luckily my daughter popped into my bedroom (someimes they do - sometimes not), and realised that I had become very ill over a shot space of time. My husband was carrying out interviews at the time, and didn’t feel he could come straight away, and I kept saying ‘I was alright’ in my total delirium (why do we do that) - my daughter had to call the Dr. and spoke to him on the home visit and assess whether I was any better after his ‘magic’ injection (I wasn’t) - she said afterwards she actually felt the decision was too much responsibility - she is 19 - and a relatively mature one at that.
Afterwards I felt angry that my husband didn’t come immediately, and he felt terrible that he got wrapped up in a work thing, which was in comparison realitively trivial.
If he goes, will you ultimately be resentful, and will you be putting your children in a potential untenable position. Don’t get guilt get angry - you deserve more.
Hi everyone,
well I hobbled ito chemo got my bloods done and they had improved enogh to carry o with vinerolbine. Dose had been increased but ‘Brian’ had decided to reduce it for this round to see how I cope. My breathing is still poor but they can’t explain why. So I am conducting my own trials with people I know I have decided it is a side effect of avastin. I realize the greats and the cleverer than me have an opinion and that is fine but my research shows several women who have been on avastin are complaining of breathing problems so I have come to my conclusion. Will it make the leading medical papers? I doubt it. Now before I go back to sleep I will try and find a cure!zzzzzzzzzzzzzzzzzzzzzz
Love Debsxxx
I’m really sorry your feeling so s**t. Is there nothing they can give you to help with your tiredness, what about steriods? I hope you feel better soon.
I’ve just had a huge argument with my 10 year little girl Eve. It’s funny, when I was first diagnosed I swore I would never shout at them again! Ha Ha, I lost it with her this morning all over something and nothing. Now I’m feeling really guilty but we are only human eh. I don’t mind if she remembers me for sometimes shouting at her because that’s just life and it would be an unreal one if I didn’t.
Hi Diane,
really pleased you had a good birthday. Don’t beat yourself up about telling the children off they soon forget it goes with the territory.
Well I slept all Saturday Ian looked really worried and he has been looking more sad over the past few weeks. It has dawned on him that I am going to die of this sh@t disease and it could be sooner rather than later. Well I forced myself to get up and when I did the place was not as neat as I would like it to be, felt like gong back to bed but had no energy to climb the stairs! Anyway today he has rung the drs for an appointment I don’t want him getting depression so maybe if he seeks help now it will help later. It breaks my heart to see him so sad.
Oh I hate what this disease does to us and our loved ones.
Well I am up but not very awake so sat in the lounge day time tv.
So do I Debs, you just can’t help getting really angry about it sometimes. If it’s not because of what it’s done to my life and how I knew it it’s when I read about people like yourself being scared and really ill with it. It’s just not fair. My hubby would be exactly the same Debs, it’s not that he hasn’t accepted what will happen it’s just that he can’t actually “go there” and I’m sure he ever will unless it staring him in the face.
Hopefully the chemo will do it’s job Debs and it’s the fact that it’s doing it’s job that is making you so ill at the moment. Debs I’m not at all religous but have you that about getting a healing? Not from a curing point of view or a particular religious one but I’ve had a few and they really do make your mind feel at peace and in a better place (well they do me anyway). My Uncle does it and offered it to me when I was diagnosed and I though “what have I got to lose”. It’s kinda like what a massage would make you feel like without the physical pushing etc. I just wish I could do something to make you feel better, it’s maybe not for you but it just might make you cope a wee bit, I just want to take the fact that your scared away from you. I’m probably speaking a lot of sh*t and when it’s getting closer for me no healing in the world will likely stop me feeling scared either. I’m waffling now, I really hope you feel better soon and this is that horrid chemo doing it’s stuff.
Hi Diane,
I have done healing and strange I was saying to Ian last week think I need to have some now it did help. I think when we are ill with the chemo we can accept or put up with it in the hope it is working. It is hard to explain but for the first time in 5 years this all seems very real. The loss of little things, doing the house work cooking the evening meal walking around the supermarket and sorting out the garden. It is just all slipping away.
Anyway I am going to ge up and shower while I still can!
Love to all.
Love Debsxxx
Hi Debs, I am sorry to read that things are not too good at the moment. I wish I could do something to help but feel helpless. Please try and keep posting to let us know how things are going. If it is any help I have been at that point in the past and thought I wouldn’t ever feel any better, but surprisingly after treatment I did begin to feel a little stronger. Sorry about Ian too. I know Cornwall quite well and twice managed to get my Bondronate infusion carried out in the Truro Hospital. Are you anywhere near there? Is there somewhere where Ian could get some support himself. Years ago my husband was great when I was undergoing treayment but once I started back at work he went downhill with depression. It was as if he thought I was on the mend and he suddenly realised how awful the previous year had been. We are thinking about you both. Feel free to send me a private message if you want to offload. Love and lots of hugs, Val ( Scottishlass) X
I’ve read this thread often and although I haven’t communicated with you before I feel like I know you a little, so just wanted to say that I am thinking of you and your hubby.
I am sorry to hear that you are having breathing problems.
I did when I was on Taxol my Oncologist thought I had fluid in the lungs but nothing showed up on scans and sometimes on this Pax chemo I feel a bit breathless…I think it is a side effect of chemo but nothing that is obvious. Mine effects me later on in the day or when I tired or even when I have just walked up the stairs once to often.
My hubby too is struggling a bit, its such a worry isn’t it and I think we feel so responsible as well.
Does Ian have someone he can talk to?
Rob sees a counselor once a month which is his safe place to talk about all the scary stuff.
When Rob struggles it effects his sleeping so I get him on tablets for a few days which helps.
We have a very GP hear, how is yours?
I understand how hard it is to adjust to your condition, I find the whole thing so frustrating and just wanted to say I am sorry there is nothing I can do but I’m with you in spirit… having a few drinks and putting the world to rights.