Thread #6, living with incurable cancer, taking ALL the drugs, and remembering our fallen comrades

[SewingBees]

New thread!

@Sausagesforever yes, me too. And I fear the impact on my daughter of witnessing the slow decline too.

How is everyone?

I’ve just had my CT scan, results on 14th January. Currently perched on the sofa, about to eat an assortment of M&S nibbles. DS is out with friends and DD is working.

I hope 2026 is kind (a little or alot ) to us all.

I went out last night for ‘one’ and got into bed at 4am. I think I could actually still be drunk. I hope you enjoyed your M&S snacks xx

@Enigma54 I am keeping all my fingers and toes for a favourable scan. 🤞🤞🤞🤞🤞🤞🤞🤞🤞🤞
I am finally at my in laws’ place in the middle of nowhere in the Highlands. They are very Presbyterian with regards to enjoyment, especially food, so instead of having as many Heroes as we can, they ration it - one after every meal. They have no concept of life is too short. And all I want to do is spend frivolously because who knows, 2026 may be my past year on this planet. Only fellow stage IV-ers understand this concept. My in-laws in their early 80’s are totally oblivious. And are feeding me this toxic positivity tripe. Which makes me commit a double murder straight away.

On the plus side, my port wound is healing up nicely. I am struggling to keep going with the oral antibiotic until Sunday (3x a day) as it is liquid and tastes as vile as you would expect. It contributes to my nausea.

@Sausagesforever and @SewingBees I keep feeling this now as I am asleep/resting most of the time and feel immensely guilty I am currently unable to do anything with him. New development is the fact that I have sharp pain just under my right ribcage which most likely tallies with the scan. First time I am in pain since this shitshow began. Not all the time but with certain movements. They didn’t mention any ascities and felt my abdomen and chest, no concerns. My foot oedema has improved, ankles are slowly coming back to their normal dainty self. 😂

Thank fuck New Year’s Eve is over. Me & DH had a nice meal & pledged not to cry - we both lasted about 10 seconds. I was in bed by about 9pm. DD was at a party & came home with 3 friends around 3am. I put my medical vomit bags in all the bedrooms 😀.
they were still up, watching Stranger Things when I got up to let the dogs out at 5.30am. Just glad she’s able to have a normal good time.
I walked nearly a mile today with about 3 stops along the way.Furthest I’ve walked since hospital so am pleased I’m getting fitter again. Have my next set of of scans in 2 weeks - these will determine my palliative treatment & then begins the difficult decision about how much to do/not do.

How is everyone?
One week until my scan results and I learn my fate. I’m terrified!
Still off work and no clue when or if I will return.

@EachandEveryone what’s the wound doing? Is it any better?
@balkanscot are you back from the Highlands now? Hows the rib pain? Any kind of new pain spends me spiralling these days! 🙈

We have snow. Some schools are closed and it’s bitterly cold. DD goes back to uni today, so the house will be much quieter ( for a bit at least!)

I’m doing ok. I had a pet scan yesterday. I’ve got rid of most of my social media accounts I just felt too overwhelmed with it all. It’s hard going , I hate January

I met with my oncologist yesterday I'm starting chemo to relieve symptoms but it will probably won't do anything to shrink the tumour.
I also met with the hospice today as they will be taking over my care alongside oncology/GP. He is sorting out a blue badge for me as well as applying for PIP. Although it's not all positive I do feel calmer now there a plan.
How is everyone else?

I need to breathe.. having a panic attack. Trying to fight this cancer isn’t working. Quality of life is -20000. Results on Tuesday and given the pain, it won’t be good news. I hate it all.

@Walkingnotrunning1 I’m pleased you feel calmer with a plan. I need a plan too.

This sounds awful but in this situation, I wish I didn’t have DC ( to have to suffer this) I love the bones off them and this breaks my heart.

I'm sorry your in so much pain @Enigma54 and I hope you can get a plan after your scan results.
I completely relate to this what your saying about DCs I hate this the most for my son. He is a remarkable resilient young man but what an awful experience for him this must be.

@Walkingnotrunning1 I know. It’s horrid isn’t it. The unfairness of it all, is insane.

How is everyone? I’m quite enjoying having no Facebook! It feels quite liberating from all the crappy ads

I am in hospital again (of course), my port removal wound has gone a bit Pete Tong, so back on antibiotics. Eribulin gave me the most awful mucositis, inside of my mouth, tongue and gums are raw red. Plus my lips as well. Because of it I cannot eat, I am in agony. And hospital’s menu is all about sweet and sour chicken, omelette, chips & beans. Their soups are an agony as well as the stock they use is making me yelp with pain. And I am always hooked up onto some shit or another, getting myself entangled.

Strong smells also set me off dry heaving. The nurses were having some kind of a fry up that wafted everywhere. It nearly set me off on edge. 🤢🤢🤢

What kind of life is this????

Good luck, @Enigma54 with the scan results. I mean it.

@Enigma54good luck

@balkanscot good grief, you are going through the fucking mill. Mucusitis is the pits. I had it after cycle 1 and 2 of docetaxol (which has done fuck all!) Why is the hospital menu so completely inappropriate for many patients? It was the same when I was in; curry, spicey foods, crackers, hard textures etc.

How is DS doing? Are the in laws over?

I’m thinking of you, as you ride this shit storm 🌻

More progression from the b***d fucker. Start my third and final treatment in a couple of weeks time. Then, that’s it for me, no more lines of treatment. My head is in a fuzz. I have no fear of dying, but fucking hell, my kids! I’ve my stage 4 absence management work meeting on Thursday. That will go to fuck as I’m hardly coherent. Fuckery fuck fuck!! 🤬🙈😳

@balkanscot how are you? Thinking of you lots x

@enigma54 so sorry to hear your update. What is the final line of treatment? Will you be able to cope with the side effects?

@Enigma54 Bastard sodding bastard news! I have had similar from my consultant today, saying my liver has never been in a worse shape. My 2nd session of Eribulin was meant to have been tomorrow but of course, it is not happening with raging neutropenia, So it has been re-scheduled for the Wednesday after (21st January, 3rd anniversary of DH’s death). Still can’t eat anything, NHS Lothian purred diet is the absolute pits and doesn’t contribute to anything but more distress, it is like swallowing little razor blades. Don’t get me started on the taste… 🤮🤮🤮

@Enigma54 sodding unfair on your children. Any children who have been sucked into this maelstrom. Can you afford to medically retire and draw some kind of pension?

What is the next treatment called? My last batch ne before the curtain falls would be bloody epirubicin weekly. I break out in a cold sweat just thinking about it. It was the most vile treatment I have ever experienced!

DS doesn’t even know I have cancer, I was literally planning to tell him after DH’s anniversary. He is also in the middle of all the kerfuffle around NAT4s/NAT5s (we are in Scotland). I feel like I am failing him in every single way. Back off him, he has already had enough shit happening in his 13 years he doesn’t deserve another sack of stinking shit 💩 on top of all this.

@balkanscot you aren’t failing DS, you are doing the absolute best you can. It’s an absolute headfuck, all of it.

What are you managing to eat now then? Have they offered you those ensure drinks? You need calories somehow. Yoghurt/custard/ rice pudding/ smoothies.. anything to get a bit of nourishment..

I can probably apply for ill health retirement, or do I hang on for death in service? Don’t know. Will chat to union rep tomorrow..

Next treatment is called Trabectedin.

i had a PET scan yesterday and CT this Friday, meet with onc. on Monday and find out if I’m worth treating etc am in a complete state of denial
I’m so sorry @Enigma54 & @balkanscot . If I even think about DD for more than a millisecond I descend into the abyss.

I keep writing and losing the messages before posting. Hello to all, I was recommended this from the general cancer thread. Although I am stage 4 (melanoma) since Nov 2019, I can see from recent posts (read through the last month or so) that I am 'lucky ' compared to you all, for being more stable and not in such a bad state. My heart goes out to you all and I do feel that we at stage 4 have a unique perspective. I won't join in actively right now as I'm not in the same boat (yet) hut respectfully send my love and best wishes and I expect I'll be back once I start to.go seriously downhill which of course we can never predict. Thanks for reading x

@livingwith welcome to our thread. Please feel free to post whenever you wish. We are all at different points on our “ journey” as we try to embrace our new lives, whilst living with a life limiting illness. You are right, we never know what to expect or predict!

@balkanscot how are you today? How’s your mouth?

@EachandEveryone how are you getting on?

Hope everyone else is chugging along as best as can be.

I've been at the hospital this morning. I've been waiting for an appointment to have a spinal block to reduce the sciatic pain I get from one of the tumours pressing on the nerve, and they called at 4pm yesterday to ask if I could be in at 7.30 this morning. I managed 8.30, having rapidly rearranged my work diary. The block has helped, I have less pain now and it will continue to take effect over the next week or so. But being back in the hospital/theatre and seeing my surgeon was quite confronting. He is a star though, he's the only surgeon I've ever met who will wheel his patients through to theatre if he's in the right place at the right time. You can see the rest of the staff love him. I think I might love him a bit too.

My latest scan was ok, no growth, no progression. I should be happy but I am just struggling quite a lot with everything. I've been having counselling to try and help with the overwhelming emotions. It does help in the long run but can be challenging at the time and immediately afterwards. After yesterday's session I felt utterly enraged at the unfairness. For me, for my daughter, for all of us and our families.

Like @livingwithI've also been signposted over to you from the general cancer treatment thread. I haven’t read all of your thread yet, but I will over the next few days. I have secondary cancer - primary breast and lymphangitis in my lungs plus bone mets. No bone tumours yet but the lymphangitis is very limiting. I was only diagnosed in early September so I guess I’m quite early on my path although I did have the worries about “will I see my son’s 18th” (November) or Christmas. I have taken a couple of weeks off work as I found I was spiralling a lot, particularly in the middle of the night and not sleeping much at all. I do seem to be in a better place the last week or so. More resigned perhaps.

I am honoured to meet you all and I’m incredibly sorry that you are here. I will read through and be back soon. Take care of yourselves and have decent evenings.

Hey :) I have stage 4 melanoma too. Im on my second course of Ipi/Nivo 1 more to go. I also have a different kind of cancer that is currently not detectable on scans, because it’s not detectable I am able to stay on Nivo until it fails basically, but it has been incredible so far. I recently had a neck dissection and thyroid removal, because the melanoma decided to grow in my neck.

Are you off treatment ?