frustrated

[Guest]

Hi Sheena,

2 weeks is a very long time. We always had exactly one week after a scan, and I thought that was long enough. Can you speak to the oncologist about this when you see him? I just don't believe people with this cancer should have to wait.

Reading your sentence about Steve apologising to you, it struck a nerve with me. That is what Dad would say to me, exactly that actually. I would just say it was ok, and I wanted him to be able to get his feelings and frustrations out on me, rather than anyone else. My love is unconditional, and I would take anything.

I think it is so very important for them to get their feelings out, and so good he feels comfortable to do that with you. Obviously it breaks your heart, but yiu are doing so well.

Take care

Leila xx

[sheena]

I'm so sorry but I'm having a bad day.everyone is getting on my nerves God how people moan about trivial things .I so want to shake them,I have done so well over the last 7months been so strong,and I find myself a blubbering wreck today.I am so angry at myself for not being in control I don't want to let Steve see me like this ,but I'm running out of excuses to use the bathroom.please tell me you have been like this at times .

[Guest]

Oh Sheena,

You are not alone on those feelings. You really aren't. They aren't wrong, or unusual either.

You are so vulnerable. Seeing your darling husband going through this, and having to be strong as well. Not easy tasks. They is only so much a heart can take.

I completely understand your anger and frustration with others. Listening to people complain about their colds, their broken nails, hearing people say this is killing me, and that is killing me. They do want bloody shaking. They have no idea what ill means.

Keep posting here as much as you can. Everyone here understands, and no one understands in real life.

You are being brilliant with Steve, come here and let off steam as much as you need.

Leila xx

[sheena]

Ty leila I feel so alone ,living on a island can sometimes make you feel sophicated.I know people mean well but they say things like if that was me I would go on a big holiday.I'm like really one I don't have any money two how can we when Steve has chemo once a week three do you think he could get insurance.then they say I know what your going through erm no you don't .I think I'm just tired as trying to work full time etc.I'm scared to lose Steve I'm scared of being by myself I'm scared Steve will suffer x

[Guest]

Sheena I'm so sorry.

People don't understand, it is why I try and avoid them. They make me feel worse. They may have had a relative die, even a close one, but until they are in your position, seeing what you see, all the worry of the appointments, the what if's, the decline, until they go through what we go through, they have no idea, absolutely none. Some people think they know how we feel because someone in their family has died, they got a phone call one. Not walked in our shoes. Ignorant people, try not to let them get to you. I know it is easier said than done. But try to push their comments to the back of your mind.

Are you not getting any help from benefits? Dad was on his own and was worried about money, he called Macmillan benefits amd they helped him no end.

I can't help with your other fears because no matter what anyone says, they won't go away. You just need to try to push them to one side and think about the here and now. Think about loving Steve, making more memories, enjoying every minute together. One day at a time.

Leila xx

[sheena]

We don't have mc McMillan nurses here Steve does get £80 terminal illness benefit .everything here is expensive the joys of living on an island .I am feeling a bit better now no tears left ,I guess I'm frustrated with the wait ,so thinking to much and worrying about things that might not even happen.been down this road with my brother cancer of the oeasophagas was told 3 mths to live basically written off had to fight for him and he is still alive now 15 years later .So I'm not overly confident with the professionals here

[sheena]

Been up hospital today some stupid driver ran over Steve's foot when we were taking garden cuttings to the recycling.fortunately it is not broken ,but very swollen and bruised .I was so cross all he could say was I didn't c u .So know Steve is on crutches until he can weight bear

[Guest]

Hi Sheena,

Sorry about the amount of money Steve gets, that is pretty poor. Looks like quite a big difference to here, which is very unfair. What bloody idiot ran over his foot?? Some people, they really annoy me!

How is Steve doing now? How are yiu feeling?

Leila xx

[sheena]

Results are as tumour is same no change ,no spread but has a nodule on side of lung which is showing up red /cancer ? So plan is another 2 mths of chemo then 're access pet scan radiotherapy .cancer markers are the same so it seems chemo is holding it back.

[alimc77]

Hi Sheena,

I don't usually post on here but I follow everyone's stories. You struck a chord with me about the people moaning about trivial things. My dad has advanced pancreatic cancer, has had chemo but there's nothing more they can do for him now. it's all i think about, 24/7 and i've snapped at a few people who've been moaning about stupid things. ive told my friends and close colleagues i don't want to talk about it unless i bring it up and they've been really understanding but you can't make everyone not talk about it and the 'i know how you feel' is the most annoying comment anyone can make. no one knows how we feel unless they've been through it. i've experienced my mum dying suddenly, literally there one minute and gone the next and now having to watch my dad suffer with this. i keep thinking about what will be worse, the sudden shock or the pain of watching him suffer. im driving myself crazy with the constant worrying. i wish you all the best and will follow your story. its comforting to listen to people going through the same as you.

Alison x

[sheena]

Hi Alison it's such a shame we all struggle it feels like you turn a corner than something else pops up.I was feeling stronger last week and actually found the courage to tell a few people to shut up ,I know they mean well but sometimes I need a break.I am more confused than ever now my God Steve's oncologist is hard work.He told us last time a biopsy would b dangerous to do and Steve might not make it so obviously we declined it .now he says after the next 2 rounds of chemo ,we should get a pet scan and have a biopsy done .nothing has changed apart from Steve being on chemo so if was dangerous then surely it's the same now .also when I asked about spread He said none now he says have a nodule on lung which was already there ,I really want to tell him what I think but Steve thinks he is great as he is still alive so what can I do grrrr.I hope your dad is comfortable and you are taking care of yourself love and hugs x

[alimc77]

Hi sheena

my dads on a high today. He saw oncologist and has decided to have more chemo. He knows

its not a cure but will buy him more time. His positive attitude

is driving me on. He wants one more summer. It makes everyone around him happy

when he's happy. The ups and downs are so emotionally draining. Take care and ignore the comments xx

[sandraW]

Hi Sheena and Alison too, still reading all your stories, glad you are both going through a better patch at the moment, just to let you know I am thinking of you, may the good times continue. love sandrax xx

[sheena]

So glad Alison every day is precious long may it continue x

[sheena]

So it's chemo day again tomorrow how the weeks go so quickly.Steve has a terrible cough and it is making him urge .He snores really bad now so I'm not getting much sleep.has finally got his body clock back to normal so that's a blessing.has got a fungal infection on his toe nails it looks really gross I'm sure the nails are gonna fall off.hope everyone is doing ok love and hugs xx

[sheena]

Not a good day my youngest was in a car crash luckily only badly bruised, my heart certainly skipped a few beats ,then Steve had chemo so have spent nearly all day at the hospital.surely my luck should change soon .x

[Sueoliver]

It never rains but it pours Sheena! Sometimes it feels like it is always "pouring" . Take care of yourself as well and I'm glad it was only bruising!

Love Sue xxx

[Marieb]

Oh no, what a shock that must have been. Thank goodness he is okay.

Marie X

[sheena]

Help I don't think I can do this anymore.my hubby has turned into a monster,he is angry at everything, I can't do anything right .I have asked if he is depressed and can't write what his reply was.He is not sleeping and cleaning the house late at night so I am sure he is tired out but says he isn't.He is frustrated that he can no longer do things and when I offer to help he shuts me down.what can I do it is so upsetting when I try to explain he is being unreasonable he is having none of it.I think he is scared to sleep and is pushing himself to convince himself he isn't dieing .I have spoken to chemo nurse about it and to his closest friend and he hit the roof .what can I do it isn't like him to be like this ,should I just let him rant on and ignore it .please any advice would be appreciated so sorry to be on a downer .x

[sandraW]

Hi Sheena,

I feel for you so much my love, Trevor had a patch of this, but his was earlier on when he was told in so many words that it was terminal. He had a couple of days when he was just the same as Steve, I got upset as you do and we did manage to have a talk and he seemed to get past it. When he was feeling unwell, through his chemo ect, he was often very short with me, what is it they say "you always hurt the one you love"!!

I think you will just have to let him rant, and as you say just ignore it, not easy I know but he is obviously scared (don't know if that is quite the right word) of what is to come, and I understand you are too. But it must be so hard to be in his position, and I am sure you know just how much he loves you.

I used to say to Trevor I know how you feel, and his reply was NO YOU DON'T! and of course I didn't really. Just carry on being there for him, and giving him support as you are, we all went through these times I am sure, but we didn't always post them, so don't think Steve is a monster, he is just dealing with this shitty disease in his own way sending you love and a big ((((hug)))) sandrax xx

[Sueoliver]

Hi Sheena I really feel for you it is all so hard a roller coaster to say the least! I agree with Sandra "you always hurt the one you love. " Awful for you but I am sure he doesn't mean it. Who knows what it feels like to be terminally ill! My Mum is very grumpy and touchy at the moment as well and it is horrible!

Can you walk round the garden when he is like this or escape to your bedroom and breathe deeply.

You are not alone and you can express how you feel on here at least! We do understand.

Take care and count to ten.

Love Sue xxx

[sheena]

Ty Sandra and sue life is so ****.I have sent him to reflexology and he has come back in a much better mood.Have spoken to him again and I think we might have sorted it out .He has one more lot of chemo 3weeks on 1 week off and that's it.we see oncologist on Dec 1st so God knows we're we go from there .I think this was the problem, he had something to focus on and now it's coming to an end .more bad news today my darling mum has kidney failure she is 96 and I'm really worried about her.I just can't wait for this year to end .love to you all xx

[PCUK Nurse Jeni]

Hi Sheena,

Sorry to hear about Steve's moods.

Just a question - is he taking steroids at all, such as dexamethasone? If so, these can often cause very bad mood swings, and aggression in particular.

If he is on these, then let the oncologist know about the mood swings, and likely he will have to stop them.

Kind regards,

Jeni.

[sheena]

Ty jeni yes he takes steroids just before his chemo will find out which it is .might be this as he has never been like this

[Didge]

Sheena, my mum had acute kidney failure 2 years ago at 89. She was put on dialysis for 3 months and recovered! I do hope your mum gets better. You could do without extra worry x