Thread #5 for those living with incurable cancer, supporting each other and remembering the lovely friends we've lost along the way

[SewingBees]

New thread, an open invite to anyone living with Stage 4 cancer to share your worries and joys and just generally chit chat about whatever you're going through today x

@Enigma52 those look delicious.
I would love a slice to take to chemo with me today.
Instead I'll be taking my usual Barney bear lol.

I don't know anything about Diazapam.
I tend to listen to podcasts these days to help me relax and fall asleep.

I don't know what is going on, but my neck is constantly aching at the moment.
I'm finding it hard to get comfortable.

Things are calming down after half term here. We went away to celebrate my husband's 70th, and my husbands granddaughter's 1st birthday. It was lovely but stressful at times. My husbands daughter has a lot of health anxiety the sheer barrage of complaints made our compassion start to wear thin. I think she may of been about to compare her aches and pains with cancer. I think my incredulous look made her pull back on that one!
Then we returned home to find out a broken roof had caused a leak in our bedroom. That seems to have been fixed without too much cost thank goodness. But it did lead to a night of catastrophic thinking for me where one leaky roof tile = me dying in a damp room.
I've a blood test tomorrow then I speak to my oncologist next week. I'm not expecting good results I'm very constipated and feeling bloated which make me think it's back.

@GoldenDog1 how was chemo
today? I'm glad Barney came with you! ❤️ How's your neck?

@Whatevershallidowithmylife walnut cake all cut up and flying up to Scotland as i type! When does new bathroom work start?

@Florsilvestredelcampo Awe, 1 is such a cute age! My partner has 2 grandchildren, almost 3 and 1 in April. They are gorgeous, but live a good 2 hours away from us. Thankfully my partners son and daughter in law are fairly easy going, no health anxiety ( which I can imagine, can be VERY tiresome, when we have what we have to deal with??). Is your son back at school now? I know what you mean about house disasters. I'm the same. As long as we have heat and hot water, I'm fine. The minute the boiler doesn't come on, or my car doesn't start, I go into panic mode!!
Really hoping you get a stable result. How long have you been constipated for?

In other news, my first chemo is tomorrow ( the Red Devil!) because it goes in ( and comes out ) looking like red wine ( apparently!) I'm nervous as crap! So so don't want to lose my hair!! To the point, I'm going to cold cap 🧢 🥶

@Enigma52 yes my son is back at school it's hard to believe that they are already in term 4 , yr 7 is really going by in a flash.
I've been constipated for about a fortnight I've been taking laxatives but a stick of dynamite might be more effective!
I hope your chemo goes well today and that you can bear the cold cap.
@Golden

@GoldenDog1 I hope you are ok after chemo and that your neck is feeling less sore.
Love to all x

Morning all.
Chemo was fine, but there was a lot of faffing about , so I was there longer than I needed to be really.
I slept through most of yesterday as I was really groggy after chemo, but will hopefully have a bit more energy today.

I think my neck is aching from where they put the port line in.
I remember having a similar feeling in my arm for quite a while, and then periodically from the PICC line.
It's like my veins ache if that makes sense, and because my veins are aching I'm probably moving my neck awkwardly without realising.
On the plus side, it is my week off chemo next week, and I won't even have to go to have my line care as the Port only needs doing once a month.
As I'm on weekly chemo and it gets cleaned and flushed at the time, it means I won't have to go up to the hospital at all next week.
I can't remember the last time I didn't have to traipse up there on a Monday.

@Florsilvestredelcampo fingers crossed all is positive when you speak to your Oncologist.
Hopefully you can get the constipation sorted out, it's horrible and so uncomfortable to live with.

@Enigma52 good luck with chemo today. I hope all goes OK.
Let us know when you can how you are.
Did you find out why you bruised so badly after your bloods?

Hope everyone is doing ok xxx

I went to a Zumba class today followed by a very fast walk home to reach the loo in time! Anyway we have movement, hallelujah😃
I'm glad chemo passed without great incident @GoldenDog1 and I'm sure sleeps the best medicine after chemo. I sometimes wish they would sedate is for a few days recovery post chemo.
I had my bloods done today so now it just a case of waiting to speak to my oncologist next week. If he suggests starting chemo again I will shout "But I'm on a break! " at him Ross Gellar style.

Chemo 1 completed. Cold cap was quite an experience! It added 1.5 hours to my to time at hospital! Oh well, if it works, it works, if it doesn't, hats and scarves it is! They checked by battered arm, some inflammation under the skin, should go down in 3/3 weeks!! WTAF 😱

I feel vulnerable and useless in the workforce. Yeah, it's fucking shit actually.

@Florsilvestredelcampo glad you " went" As a bowel fanatic, constipation freaks me out!

@GoldenDog1 how are you today? X

2/3 weeks even!

@Enigma52 just the thought of the cold cap makes me shiver.
Fingers crossed it works.
How are you feeling today?

I'm feeling OK today.
I've just taken the dogs on a gentle walk and I'm about to go out and meet some old colleagues for coffee.
I've got some neuropathy in my hands today, but hopefully it will bugger off quickly.
Depending how I'm feeling when I get back, I would like to get out in the garden and prune some of the weird and wonderful bushes that are out there.
If I don't do it soon, they are going to take over my tiny garden.
I also need to get it done before nesting season.

The sun is really giving me a lift today.
I hope everyone else is doing ok xxx

Yes, not doing too bad so far. I'm
up and about. Felt a bit sick this am, but took an anti sickness tablet.
No idea if the CC will work, unlikely ( given my stats on luck!) but at least I will have given it a shot!

The sun is out!
Now to get dressed!

🌞☀️☀️🌞🌞🌞

I’m fed up. I haven’t spoken to my oncologist for three weeks so I’m no further on. I haven’t had any treatment for three weeks and I don’t know if I’m getting immunotherapy yet. To top it all he rang me yesterday afternoon when I was sat on top of the phone and it never even rang. My iPhone keeps doing this. No missed calls shown but a message on the machine saying he will email me.

the groin abscess absolutely reeks again just like it did in the beginning. The dressings are lasting afew hours then start leaking. I didn’t realise how tight they are with dressings so I just shove kitchen roll there until the come back the next day. That can’t be good.

@EachandEveryone sounds grim, not what you need at all! As these abscess wound's are leaking badly, you need more dressings surely? How long do they expect you to put up with this?? Did oncology email you back? Where is the cancer, in the groin itself?

Yes but secondary and no primary found. He emailed said he’s trying his very best to get me immunotherapy and is waiting to hear. I just hope it’s not long.

Found you all! I was still relying on alerts from the old chat - but was worried it was so quiet!
Then I finally thought to click on link from new chat and hey presto!
@EachandEveryone - do you have an iPhone? I think my phone wasn’t ringing and my niece showed me that when I do that pull down thing from the right hand top corner of the phone - there was a bell with a stroke through it. My phone was on a silent mode. I clicked the bell symbol and the strike went away. Also turned up the volume. It’s infuriating to miss calls.

Im ok. Had 8 rounds of chemo now. Ca125 is down to 461. 10 weeks to go. Feel better than I did in December and January, but still tired at times.
Will join in the chat more now that I’ve found you again!!

Thanks I’ll have a look at it. Anyone else have hands like ice blocks? I just can’t get them warmed up.

glad your markers are going down that’s such a lot of chemo.

Urrghhh... bowel talk again!
Constipation; chemo or anti sickness linked?? Whichever, it's rubbish! Just when I'd got it all sorted out! Help!!

My " plan " tonight'.

1 dulcolax
2 stool softeners
Another movicol ( had 2 already)
2 teaspoons syrup of figs
A kiwi

🤞

@Enigma52 - I know it’s a bit late in the day - but should you contact someone for advice? The GP, MacMillan or the Cancer ‘Hotline’ - just in case there’s something you haven’t thought of. Are you drinking enough water? (I’m sure you are).

@Enigma52 as you know, I suffer so badly with chemo constipation.
Someone recommended dates.
I've been eating 3 every morning at breakfast time and it has been helping.

@EachandEveryone I bought a big box of handwarmers from Amazon.
I just sit and hold them when I can't get my hands warm.
I've found they help with the neuropathy too.

@RedRosesPinkLilies yes drinking loads of water. On the movicol now and will take the dulcolax tonight. Have had enough already. Normal life?? What even is that?? 🥺

Just got to wait for my hair to fall out now, to top it all off!

Dulcolax suppositories sorted me out. Up the bum but it works! I've never given birth but Christ it was a relief! Think I'd not pooped in 3 weeks and got so pissed off it was like last chance saloon before I called the chemo hotline and I'm not proud but I used the body hose on our shower in the bath pointed it at my bum and well the rest is history but it was like a Pringles can. I felt quite proud 🤣.

I was texting my friend who is also a gastro surgeon and she was proud of me too because she wanted to admit me and I wasn't having it!

No shame in doing what works!

My lovely Nana died this week after a massive stroke and I fell out with my mums sister and my cousin because I didn't join them in their 24 hour vigil at her bedside in resus, the stroke ward and her care home because I had chemo on Monday and the ward she was put on hqd norovirus and I refused to go. It would have floored me

@batterychicken well that's Pringles off the shopping list this week!😂

Okay, today, I have to tackle it.

Kiwi, rhubarb,chia seeds, figs, water ( until it stops coming out the tap!) orange juice, movicol and suppositories!

Sorry about your Nana 💕
The thing is, we do have to protect ourselves right now. We know life goes on and things happen, including death sadly. But chemo and norovirus? Hell no!!

@batterychicken 3 weeks not pooping??? Christ on a bike girl! That must have been horrific??

@batterychicken I put the laughing emoji - then read about your nan - sorry about that.

How can people be this stupid? Chemo and Noro virus - just stupid, there's no other word.

@Enigma52 Good luck today. Xxx