Living with incurable cancer - incurable patients only

This group is specifically for people with an incurable or terminal diagnosis. Whether you need to talk about dying, or about making the most of your life, you can discuss your feelings openly here.

Struggling

Tinalay
Posted by

Tonight I am really struggling.

I have a scan on wed morning I've been waiting for for 6 weeks. (Not so long) The last 2 scans were awful, and the cancer markers have shot up, but my Consultant thinks it could all be down to what he described as raging pneumonia and pleurisy in July. 

I don't want to do this. I don't want to have another scan, the last one ended in tears because no one could get a vein, and then have the build up to the results and then be given the benefit of the doubt, which felt like winning the lottery 3 months ago but now  just feels like being in limbo. And then do it all again next month in Leeds for the brain MRI.

There's been a major change in how I am this year, and as others have said, it's another step down the road. I've been following all the posts and know that many of us are having a far more challenging time.

But I'm so sad, and so tearful tonight.

Tomorrow I will be brave, lippy on and a big smile. xx

Tinalay 
Elliekate
Posted by

I'm so sorry you are having a hard time tonight and wish I had words to help you feel better. I dont know if this will help you but I used to have a terrible time in the scanning department with nobody being able to access my veins I now go to the chemotherapy unit to have my cannula put in before going to the scanning department. They are used to dealing with difficult veins and manage to get mine each time

I hope this might help you xx

Popgate
Posted by

Hi there you have been there for me a couple of weeks ago so I am here for you anytime for a chat it's awful these scans and then waiting for results I don't know what's worse the scans or waiting for results I know all about the crying game and the despair as I think we all do but I feel if you have family or close friends you can rely. on it makes a difference I am on my own apart from my only best soulmate friend and now this site which I felt on greatly for support and friendship is a lifeline to me and you are not on your own knowing you are not on your own is half the battle you have great support on here day or night I know someone will give you help and words of encouragement keep fighting on and be brave we are all rooting for youxxxx

Flippen
Dance in the rain
Posted by

Morning Tinalay, I'm so sorry you're struggling but it's not surprising.  At some point that smiley face and lippy has to give way and actually I think it's perhaps important that you do Hagar a good cry.  As you might remember I was feeling rubbish this time last week.  This week I'm feeling stronger.  It's just part of this horrible rollercoaster that we are on.  Good luck on Wednesday I will be thinking of you and sending positive vibes xx

Tinalay
Posted by

Thanks for your kind words Elliekate. I did get sent to the chemotherapy unit in the end last time, and will give them a ring this morning and avoid the multiple stabs and bruises! That will definitely help xx

Tinalay 
Roobarb
Posted by

Hi I’m too late to offer support but I hope it all goes ok today, I second the chemo advice, I get that done too, they are the experts! Hope you get through the day and home in the blink of an eye xxxx

Tinalay
Posted by

Morning Popgate, or is it Flippen, which do you prefer?

You'd think you'd get used to it, but In some ways the repeated scans and psyching up for results gets harder. The signs are that my treatment is no longer working but I've been given the benefit of the doubt because of complications, so it feels like there's a lot riding on this one. I can't tell my family or friends how I'm feeling, they see me as 'brave' and 'strong' and I want to make it as easy for them as possible.

My twin sisters husband was diagnosed with Lewy Body Dementia at the same time I was diagnosed as incurable and then terminal. As my cancer has progressed I've some times felt it's like death by a thousand cuts, but the cruelty of his disease is utterly heartbreaking. We miss him every day, but he's still here, and it's sucking the life out of my sister too.

So I have to be strong, but I felt sorry for myself last night, and needed someone to talk to. Thank you for being there, like you, I've come to rely on the support from our group at these times, and it's a lifeline. 

I know you were expecting bad news recently and it went your way, so I'll stay positive and hope for the best, because worrying about it will not change a thing. xx

Tinalay 
Tinalay
Posted by

Morning Dance in the rain, you're absolutely right, I feel better for a good cry and the lovely support from people who know exactly what this is like. I'm glad you're feeling better this week. Sometimes it's just relentless and probably better to admit when it gets too much.

Not too late Roobarb, the scan is on wed am, so I'll go armed with good wishes and positive vibes via the chemotherapy unit, thank you both      xx

Tinalay 
daloni
Posted by

Hi

You sound as though you feel better now that the sun has risen and it’s a new day. I’m glad for that - and also that you leant on the community when you needed the support.

I sometimes feel like I am carrying a big orange ball of pain and sadness and fear and sometimes it gets too heavy. Then I need someone to hold it for me, just for a little while. It’s important I pick the right people to hold that ball. Some people just aren’t strong enough or their hands are already full. It’s the beauty of this community that there’s always someone who can take the weight off me. I hope this makes sense. 

I hope today brings something joyful. My every morning right now is full of a small fluffy ball of joy - namely our puppy Noodle. Yesterday morning I greeted her and got her calmed down before doing some yoga cat stretches to soothe my aching back. Every time I lowered my head, she licked it. Later I went upstairs to do my stretches. One of the cats was hanging out there, disconsolately, keeping out of puppy’s way. Every time I lowered my head, she rubbed herself against it. Oh what it is to be loved. 

Oh dear. I’m becoming a puppy bore. Can you forgive me? I wanted to make you smile 

Lots of love, Tina dear 

tvman
Posted by

Hi Tinalay

So sorry for you that you're feeling like that, I'm pushed for time because I'm dealing with my deceased brother's possessions, but I will get back to you tonight if you don't mind.

On Wednesday am, go armed with positive vibes, good wishes and something green Good luck little Tina

Tvman xx

My philosophy is simple, love life and family.
Tinalay
Posted by

Hi Daloni, that's a great way to explain this load and how to cope with it and lessen the weight at times.

As always, this community came to the rescue and I feel stronger and as if I have an army of support, we all need to reach out when it  gets too much.

Your post did make me laugh! There's no such thing as a puppy bore in our world. We have a Cairn Terrier, Sula, we got her after my first diagnosis 10years ago. We couldn't afford a holiday that year, but got Sula on the first day of the school summer holidays and my 13 and 15 year old sons were put in charge of looking after and training her, I just made sure they were up before I went to work.

When the school term restarted I took a couple of days off to make sure she was alright without them. She disappeared after breakfast, and I found her in bed. Apparently they all went back to bed after I left and got up at lunch time, and that's been her routine ever since! It worked really well, because I was self employed, so was able to come home for a couple of hours during the day and we both had a long walk in daylight all year round. She's been a bundle of fun and provided us with endless laughter and entertainment. Noodle will be the same.

The cats will get over it, I've heard ultimately they always have the upper hand, but they'll be a bit 'pit oot' by the puppy stage.

It amazes me that everyone rallies around in spite of (because of?) what they're going through themselves. This is a very challenging week for you and you're constantly in my thoughts. Sending you love and the very best of luck xx

Tinalay 
Tinalay
Posted by

Oh Tvman, such a tough time for you, I'm so sorry. 

I will take all the good wishes and positive vibes coming my way, and wear something green in your honour. It worked before! Thank you for your support in the middle of such heartbreaking circumstances.

At one time I always assumed things would go my way and just didn't worry, then for a while it seemed like a lottery, who would get good news, who would get the bad news...... Now it's more like a game of Russian roulette.

Like many of us insomniacs I feel better in the light of a new day, and with so much support the next couple of weeks seem a great deal less daunting. Lots of love.   xx

Tinalay 
flowerlady
Posted by

Sometimes it's just really hard isn't it? You want to get on with life, and stupid scans and appointments get in the way. Hope it goes well on Wednesday, and you never know, it could be better than you think.

Xx

Flowerlady x
Popgate
Posted by

hi there thanks for getting back to me as for the popgate or flippen I hadn't a clue what I was doing when I set them up I kept coming up with names that everybody else had don't normally do anything on line so was really struggling to get on the site to begin with keep being positive and I know it's hard I was told a few weeks ago that mine is incurable as it's rare so the best they are trying for me is to keep shrinking them with chemo I call it the alien is having a picnic everywhere wondering where it's going to land next thing is as well I missed another chemo session due to me bloods not being right on Fri so in my head I thinking it's got a head start again felt fine as well which I think makes it worse but you keep battling on just when you think you can't go on you do and you will to and helping other people on this site as well it makes you feel better as we all support each other there is always someone to pick you up on here when you fall down its like that comment I received the other day about the boxing match it's us verses the cancer i put it on my memo board to remind me to keep fighting so I am telling you keep fighting and stay strong xxx

Flippen
Tinalay
Posted by

It is Flowerlady. There was disagreement about my last 2 scans, with one Consultant telling me the cancer has spread to my lungs, the treatment’s not working, and another giving me the benefit of the doubt after pneumonia. As you say, it could still be good news.

How are you feeling at the moment, did you manage to book a holiday? I hope so. I meant to say ‘Congratulations’ on finishing your degree! That’s quite an achievement you should be proud of yourself.     xx

Tinalay