Thread #7, living with incurable cancer. Taking ALL the drugs and remembering our lovely friends

[sellotapechicken]

The other thread was full! I am waiting for the oncology assessment unit to decide what to do with me tonight. I keep spiking temps but it goes after paracetamol so they can’t decide if it’s a reaction to immunotherapy or not..

Hoping this works!

Thank you so much.
Im so sorry to hear about the brain mets. I havent had brain involvement. I have been on Cape tho. The tablets are quite big and I think it was a x2 day dose but not 100%. I felt tired, a bit queasy and that was about it I remember.
Ive learned that cancer is a highly complex systemic disease and most of the time makes no sense. Im so over it all too and find it exhausing and tedious to have to think about it all the time.

Delurking just to say, hope you have support around you @SewingBees , have your med team come up with a treatment plan yet?

Have you let work know about the upcoming treatment.....

Hey how are everyone doing? I hate the heat

@Enigma54 Happy very belated birthday! 🎊 And good luck on Friday. 🤞 Mine is on 8th June with a follow up appointment on 8th July. Full 4 weeks of waiting. Again. I want to live for another 3 months!

@SewingBees I am so sorry to hear about the brain mets. Do you have a firm plan in place? Have you stated on it yet? Losing your driving licence must be hard, yet another chip taken off ourselves thanks to state 4 cancer. Thinking of you. 💐

I am in Scotland where it has been hot but not as hot as down South. Although 25 degrees is scorchio for up here.

Off to another dose of Epirubicin this afternoon.

@Enigma54 good luck tomorrow! I have just had my 8th July appt. changed to 29th July - WTF??? I know it’s holiday season and all that but to wait for 7 weeks to find out CT scan results being a stage 4 patient is beyond any comprehension. I did ask if there are any appointments sooner, the only one they could offer me would be a week earlier, so I said no. I am going to see my brother during that week and I am not changing that - he is on annual leave then and that’s the only time I can see him properly. It may even be the last time I see him, who knows?

7 bloody weeks! I am speaking to the secondary BCNs tomorrow about how to juggle chemo appts. while I am away and I will ask them again to consider phoning me as soon as the results become available.

@balkanscot7 weeks is indeed hugely ridiculous! They have NO idea how stressful the waiting is, no idea at all. It doesn’t seem that uncommon though, unfortunately 🙈 How are you feeling after the last dose of epirubicin?

Yes, tomorrow’s the day. I feel ill with worry. Next Tuesday I have a blood test and see the oncologist, but I know the results won’t be in by then. It’s all just an absolute horror show.

@SewingBees how are you getting on? I’m sorry things are tough. Cancer takes so much, bit by bit, despite us trying to hang onto each and every bit of our lives. I’m also thinking of you.

I’m coming up to the dreaded 3 monthly bloods mark. I’ve not had a scan since Christmas and I’m in a mental fizz over “symptoms”. I’m probably just fat but I am so scared the fat tummy is ascites again. I’ve emailed the gynae CNS in a panic tonight requesting she ask my consultant if I can have one. I don’t know how to contact her otherwise which is probably a bit daft - her secretary never replies.

I have now put on 3 stone since pre hysterectomy and I am furious about it, but lack the willpower to do much about it - I exist in a constant battle between “I hate myself” and “fuck it why NOT eat cake I totally deserve it” 🤣

@Enigma54i hope your scan went well, when do you get your results?

@AGreatUsername definitely agree with you, why NOT eat cake??!? I’m the same with crisps. A sharing bag, literally means I share with myself and no one else!! 🤣 I’ve not experienced ascites, but isn’t it a fluid buildup and you would likely be suffering with other symptoms? Maybe constipation/ feeling full after eating? I’m sure you will be okay. A scan will definitely put your mind at rest.

I don’t know when I will get my scan results. I see the oncologist on Tuesday after my blood test, but i doubt my results will be in by then. What a shit show! 😳

Scan results show both cancers are stable. I get to live for 3 more months and see DD graduate. Thank goodness!

@Enigma54 I’m waiting on a scan also. I get the results at the same time as my dr which I really appreciate. I feel like I live from PetScan to PetScan, every three months. I know what it’s like and so sorry you’re going through this too. I’m at the hospital getting my every other week palliative chemo. Hopefully I’ll have anther three months also.

@Sbmpp I hope your scan results are favourable 🤞🤞 Sometimes it feels like a living nightmare which I will wake up from one day! Sadly it’s always there. Now my ill health retirement has gone through, it seems even more unfair. Blasted cancer is taking EVERYTHING 🤬

@Enigma54 I know what you mean. I went in for a routine EGD and the dr told me “you have esophageal cancer”. My life immediately changed. I feel like I’m in the same nightmare with you. My chemo is palliative. I feel like every pain is a new cancer popping up. Nasty bugger disease.

@Sbmpp I hear you. The minute you are diagnosed, life changes immediately. I totally agree re: each new pain, I’m the same. The night before scan results, I crumble completely, it’s horrid.

How is your chemo, in terms of side effects? Mine buggers up my digestive system completely and everything turns to concrete. I hate it all.

@Enigma54 So that’s why I’m having such problems with my GI system? Chronic constipation is driving me crazy. The fear that my tumor is growing is always there because that’s what cancer does. My cancer is not curable but considered treatable. Bless my oncologist’s heart she is the best. I want this to go away. Every single day. My blood counts are always bad now. The granyx shots are horrendous sometimes. Hang in there. They’re discovering new treatments every day. I just read about a new drug for pancreatic cancer that doubles life expectancy. It truly is a game changer and I’m so excited for those that can use it (sorry I don’t remember the name). I want my old life back.

@Sbmpp I want my old life back too, so much.

Well your chronic constipation could be chemo linked? I know mine is, coupled with the effects of oxcodone pain relief. I haven’t worked out a solution yet unfortunately! Maybe they will discover revolutionary treatments for us all to buy us all more time, that would be wonderful. My bloods are bad too. I was meant to have chemo today but alas, neutrophils say no. Maybe next week.

Hello! My lovely sister found this thread for me and I'm slowly reading through all the previous posts. I hope it's ok if I join you ? I was diagnosed with stage 3 colorectal (bowel) cancer in late 2024. I had radiotherapy and chemo to shrink the tumour before surgery. Surgery was in June last year and I've had CEA blood tests every 3 months since. They have slowly risen and so I had a CT scan.
I got the results 11 days ago. The cancer has spread to my lymph nodes and because of where they are and the ones that are affected means they can't operate. I was told it is stage 4 , inoperable and incurable.

We are trying to be 'normal' and not fall apart as DS (17) is sitting A-levels atm and DSD is only 10.
Sorry if this is a wall of text...I can't seem to get my thoughts together because I just feel frozen in fear.
I'm at the oncologist tomorrow and wanted to have a list of questions but every time I try and write one I can't seem to think what I need to know (apart from how long have I got left - which I'm guessing they won't be able to answer).
Would anyone mind telling me what they asked their consultant or wished they had asked so I can start a list off ? Thanks for reading xx

Welcome @mrselizabethdarcy. The total shock of the diagnoses will send you reeling. Id say one thing, avoid google like the plague. It literally makes no sense. Have you a follow up appointment to discuss the plan ahead? There will be a plan and it really does help when you hear it and have something to focus on. This bit now, is the worst as you are in limbo and you dont know your team or whats next. You will know and then it does get a bit more manageable but it is a rollercoaster and there will be times when you feel stuck, mid air and have to be rescued, hopefully not too many mid air situations tho.
Im Kat and Ive stage 4 breast cancer and have been treated for it with a menu of chemo, targeted drugs for 7 years. Im never in a position to say the cancer is gone or even shrunk but I am in a position where its not getting worse for now and Im taking it. I live a relatively ordinary life, work 15 hours and plod along although a lot slower than I did..
Keep posting.

Thank you ! You're so right about the total shock .I don't really know if it's properly sunk in yet. My DH agrees about googling too much but I can't help it..I need to know , even if it's not really helpful. It's great to know that we can live a normal life like you say ....I've been imagining every awful situation I can (I'm positive like that 😀). I've done my list for the consultant and will keep posting. Thank you x

@Enigma54 I’ve heard back from my oncologist and GI Dr. I’m to have a an EGD and a colonoscopy due to having both upper and lower GI bleeding. Then there is that Petscan which comes first. Either way I’m fearing the results. Everything was going so well. I’m really scared but hanging in there. Thank you for “listening “.

@mrselizabethdarcy @Middleageddreameresawsss Just wanted to offer support during this godawful journey (my emojis aren’t working). I’ll be thinking of you and sending prayers across the Atlantic.

I’m sorry to hear about the stories of your treatment 💐 Although @livingwithhas had such a wonderfully positive scan. Fantastic’

I do identify with Enigmas hedgehog look though!

I also have a DS taking his A levels at the moment. I will be glad when they are over as they are causing huge stress to us all.

i have primary breast cancer but they found this via the secondary cancer - lymphangitis

The lymphangitis is the worse part of the cancer diagnosis. Scans have shown that I also have liver, spinal and brain cancer. I had weekly paclitaxel through the autumn starting as an inpatient. Then I moved to anti-hormone treatment (everyone still believed that the primary breast cancer was the issue). I went completely loopy and ended up in A&E again!

It wasn’t great as now I am back on chemotherapy (tablets) which has helped my “brain fog” but I now have horrible side effects. I guess it’s one or the other? I am using a wheelchair all the time now and also have horrible lymphatic swelling. My friends visit me, which is kind, but I can’t go out without DH and my chair which is very limiting.

I do have a ct scan and an MRI booked for July. Fingers crossed for a positive MRI as this is the one which is looking at the brain cancer! Not sure how long I have left.

@mrselizabethdarcyi am in a similar boat - albeit different cancer. I have a rare type of ovarian cancer and only managed 9 months NED before it recurred in my lymph nodes. Also inoperable as they are rear of chest wall and clavicle by major arteries. I have however had a good couple of years stable so far.

Totallt understand the shock, I feel the same, I just cannot believe it might kill me when I am absolutely fine and dandy. It’s horrific. I used Macmillan when I recurred to get counselling and also sessions with cancer “buddy” which I actually really loved. It was so amazing to speak to a person who really did understand when no one in my real life does. Take all the help you can get, sort a will if you haven’t already so it’s not on your mind and then just concentrate on saying “yes” to as much as you can in life!

@Ventress I totally sympathise with the A-level stress, it's a bad time anyway without dealing with all this. DS did his last one on Friday thank God. So we have got a bit of breathing space for now. I haven't heard of paclitaxel but know I dont have to ask how it is..they are all awful in their own way aren't they? I'll be keeping my fingers crossed for your scan in July x

@AGreatUsername it's good to hear you have had some stable years. Do you mind me asking if you are having treatment and what it is ? I have seen the cancer buddy advertised - I'm not the best at opening up to people I don't know but I'm thinking that now is the time to get over myself and accept help and advice and actually open up to people - so it helps to know that you found it helpful. I'm still in shock I think but we are going to sort a will asap - good advice !