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

Well this doxorubicin poisonous shite, is battering me hands down! Nearly a week on and I want to throw the towel in. My stomach lining feels like it’s being ripped to shreds and energy ( what energy ??) WTAF?? ☹️☹️☹️☹️
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@sellotapechickenwho is the miserable sarcoma doctor?! Misery!

Ha! I’ve met 2 miserable bastards so far in clinic. I don’t know many of the sarcoma team but I hate clinic. I’m on a different chemo now so my hair cut was pointless 🤣

I had a very good evening but it was very sweary. The whole night was dedicated to the guy who helped start the teenage cancer trust and book all the acts through his promotion company. There was a standing ovation for him and I teared up. I knew him from the infusion suite and we used to have a good old gossip about his job. He put Oasis out there so he was totally my era. RIP. Chris.

im on the way home now. I noticed I peed some old blood which has freaked me out and I noticed some old blood coming out of my wound when they changed it. I’m freaking out because I really can’t have anything interfering with me starting immunotherapy. They say antibiotics can stop it from working I don’t know what to do. I start in six days.

Morning everyone.

@Enigma53 sorry to hear you are having awful chemo side effects.
How many cycles do you have to have?
Hope you are feeling a little better today at least xxx

@EachandEveryone Have you spoken to someone about the blood in your pee and your wound?
It could be nothing to worry about, but I would definitely get checked out.
Even if it is something that requires antibiotics, it will be safer to get it cleared up before you start immunotherapy.
Hope all goes well.

I had my final round of cycle 16 on Tuesday.
I felt a bit rough yesterday, but a little better today.
It's my week off chemo next week. I always look forward to my week off.
I don't really have any plans at the moment but we'll see if something comes up.
I do have an appointment with my Oncologist on Monday, but decided to keep it as telephone so I don't have to go up to the hospital.
As I've now completed double the cycles of what they originally had me down for, I feel like I should be asking questions.
Maybe something like, is there anything else they can do?
Any ideas on that would be welcome.

How is everyone else doing?

@GoldenDog1 - another period of uncertainty- it’s our life, isn’t it.
I guess that’s your opening question- what happens now?

I haven’t posted in a while..sorry. Continue with chemo - had 11. Ca125 is down a lot.

I had an appointment with an Oncology Regustrar the other day. I would say he was more help than the Consultant I see - pity I might never see him again.

Because I’m responding to the chemo they want to give me 6 more treatments- ie 24 instead of 18. It’s a thought, but obviously I need to get on with it (and be grateful).

They also hope to add in a second drug - easy name is Avastin. Medical name I haven’t got my head round yet (it begins with a B). That would be an infusion every three weeks for 15 months

Given that I thought my time was up in January I am very grateful.

Interestingly and separately, I asked the Registrar about another drug the Consultant mentioned - Keytruda. Registrar was very surprised and told/ explained to me that Keytruda isn’t even used in my type of Ovarian Cancer.
Why on earth would my Consultant mention it to me as an option then? I really don’t trust him that much. Maybe trying to give me false hope.

Anyway, I know I’m comparatively lucky just now. I am getting more tired with chemo, and had a rash across my cheeks this morning- have taken anti histamine in case of allergy

We are away next week to a house in the Gleneagles resort. I have to come back up for chemo mid week, but that’s ok. Our 4 children (and 2 girlfriends) will come and stay on a rota basis. Looking forward to the break. I think we’ll spend a lot of time in Scotland (and maybe rest of UK) this summer

So any suggestions for trips are great. We like seeing history and walking/ getting outdoors). But I’m not up to long walks just now - 5km max. I guess I can sit and wait on my husband to come back.

I still have a friend who commiserates about chemo, then tells me immediately how great her life is. I need to cut ties. Complete lack of empathy. I can absolutely cope with others having a normal life, but there is something of understanding missing from her messages. Curious as she is a Dr. Maybe it’s too hard for her to contemplate.

Long message- I need to message more often!

Love to all, especially if you’re struggling even more just now. Xx

I’ve decided it’s not blood in my pee but it’s the wound dripping when I go to the loo. It’s so out of control the packing and everything just plops out every night it’s like water fall. No wonder I’m getting infections.

my family want me to move back up north but I can’t leave my treatment! Of course I can’t he fought so hard to get my immunotherapy.

is anyone else losing weight? I’m eating fine but much smaller amounts.

im sick of being a prisoner in my flat waiting all day for the nurse but yes, I am greatful for all the support I’m getting. It just gets lonely on your own.

@RedRosesPinkLilies the plan is to carry on until it stops working.
I think what worries me is reading about people in America who are on the same chemo for a long time, they get heart echos to check the chemo isn't causing any damage.
I've had no such checks.
I also wonder, as the chemo has done a good job at keeping my cancer stable for so long, is there anything that might shrink my primary tumour?
I don't know, maybe it's just wishful thinking on my part.
I'm grateful that so far I'm doing ok.
The way it was put to me originally, nobody expected the chemo, or me, to do so well for as long as I have.

I understand about the tiredness.
The fatigue is my worst symptom and can be debilitating at times.
I'm currently trying to reduce my sugar intake (I have a very sweet tooth) and I definitely feel that is helping with my fatigue.
I'm also trying to up my fibre, but as of yet that isn't working as well as I had hoped so I'm still taking the laxatives.
I'll keep at it though.

Regarding your 'friend'.
It seems we all seem to have one (or more) just like that.
To me, they are utter arse holes that just need to fuck right off.

I hope you have an amazing trip to Gleneagles.

@EachandEveryone Would you like to move back up north?
I'm just wondering if you did, would you be able to continue your treatment elsewhere?
I'm sorry you are feeling lonely.
I also live alone and despite having a large family, work commitments and their own young families to care for, means I spend a lot of time on my own too and yes I can feel lonely and isolated at times.

No my town is dull and narrow minded. I have lots of family there that is the only thing. There’s no comparison to London really. My consultant comes accross as been incredibly laid back my sister couldn’t believe it said he wanted a good shake 😀 but underneath that he will not give up on me he got me the immunotherapy and it’s the first time it’s been granted for an unknown primary. He told me himself not many people would’ve tried. I can’t then turn around and asked for it to be transferred. However, it is every three weeks and if it works say after a year I might reconsider and just come down for it.

im back in that busy busy cycle again starting with bloods tomorrow and scans next week I need to be positive but I know it’s grown even before I have the scan. It’s a lovely day today I miss just being able to get up and walk the length of the park. It’s the little things, isn’t it?

Evening all!

Glad you had a good evening @EachandEveryone ! The band I mentioned as James Arthur's opener last night sound fabulous with the RAH's sound system rather than grubby 150 people, indy venue, tech 🤣 . So proud of them even though they're not my own girls! & hopefully they get to play there as the main act one day - I will be front & centre for that! I spoke to their singer last time we saw them about her stunning ginger hair...it's a wig...she had chemo & kept the wigs .

@RedRosesPinkLilies I liked the registrar my two consultants had, when I met him.

@GoldenDog1 you only need the one question - "what next?".

Sorry if I've missed anyone!

@Enigma52 do NOT throw the towel in!!!!!

I've sent a scathing email to PALS today. I've had enough of being treated like I'm at the beck & call of the NHS & have made that very clear 🙄. My former work bestie said she can feel the eye rolls from her house...

I'm not an NHS number. I'm not a D number. I'm not a stack of consultants notes. I'm not sitting about waiting for whichever dept to call me either hours early, or late, regardless of whether I might actually have my own plans/things to do.

I'm a human being. Albeit with unwelcome cells. But, a human being nonetheless, and I think some departments need a reminder of this.

Wonder what the response (in 3 working days, of course 🙄) will be 🤔

@GoldenDog1 - do you have symptoms that suggest damage to your heart? Breathlessness/ chest pain on exertion/ palpitations/ swollen ankles - to name a few.
The plus side of not being scanned is they can’t stop the chemo if they don’t have concerns about your heart. Lack of knowledge can be useful too. In America they will be able to charge for scans. The NHS is more pragmatic.

Actually, thinking about it, "I am not breast cancer" should have featured in there, too!

@Enigma53 it's the psychological effects that are getting me down The fatigue,the nausea, the skin rashes,lack of appetite etc,etc all stop me from all stop me from doing anything that makes me me.Running is a distant dream, I'm ready for bed by 7pm so going to the choir that gave me joy is not possible. I've lost a lot independence which hurts. It seriously makes me question the point of the treatment.
I'm sorry your going through it as well it's tough x

@lucysmam I wonder if they will turn up on one of the smaller stages at Glastonbury? I still can’t believe I’m going so don’t know who I think I am. If this leaking doesn’t stop I don’t know what I will do. My poor nurse friends it will be like a bus man’s holiday.

@EachandEveryone they did Leeds & Reading 24, and are at Download this year, so maybe!

Hopefully the leaking is sorted by then 🤞 and you can all enjoy it!

@RedRosesPinkLilies Thankfully I don't have any symptoms to suggest problems with my heart.
I think I just got anxious about it after reading a support group where people on the same chemo were having their hearts monitored on a regular basis.
Some of those support groups can be both inspiring and terrifying at the same time.

@lucysmam for now the 'what next?' is to continue having weekly chemo for as long as it is working to keep it stable.
My previous Oncologist did say there is another chemo he can try when this one stops working.
I think what I was asking is, should I ask if there is anything else they can do?
For example, can they shrink my primary tumour?
In reality, I already know the answer, but lately I have started to wonder about these things.
As I said earlier, it's just wishful thinking on my part.

@Florsilvestredelcampo so sorry to read you are going through all that.
Treatment can be tough on us physically and mentally.
Sending you a virtual hug.

@Enigma53 how are you today lovely?

Has anyone heard from Herbal?
I noticed she hasn't posted for quite a while.
I hope she is doing ok.

Love to you all, and for those of you having a tough time right now, I wish for you a better day today.

@GoldenDog1 I’ve left most of the ovarian cancer facebook support groups. I did stay on the Scottish one in case there’s useful info (trials etc)
Was fed up hearing about people who get to the magic 5 years and were worrying about recurrence.
I never got out of the swamp!!

Trouble is - even the ‘same’ cancer is different at the micro level. We are such individuals with this disease that it’s really hard to compare.
(Some ovarian cancers are low grade and can be cured. I now think it distorts the info I read online about prognosis).

@RedRosesPinkLilies I think I will have to leave the groups too.
They are American based anyway.
Unfortunately I haven't been able to find a stomach cancer support group for the UK.
I do sometimes read the Mcmillan forums as they have forums for specific cancers.
However, I find that most posters were able to successfully have surgery and I can't relate.

Hope everyone is ok. I’ve had the 24 hours from hell. Dog woke up panting which is not normal for her and husband had the car so I had to get a train to get the dog to the vet but chemo brain struck and I got off too early so had to wait for a bus for 45 mins 😭. Vet said potentially heart failure and the test would be ~5k and we couldn’t use insurance 1st. So he gave her an injection to take her pain away, then we got home and she puked everywhere. My mum is a Vicar in a rural community and the vets are fantastic as they’re mostly farm vets so I booked an appointment to see them. Except DH had the car so my poor mum had to drive from Mold to the Peak District and back again for my dog to see a vet They thought pancreatitis as her heart was fine (cheers Steve 🙄) took bloods and said bring her back if she’s sick again but she had a raging temp and had some injected abx and anti emetics, I managed to get her to eat a tiny amount last night and she had a 1/4 paracetamol but this morning she was panting again..

so we went back and the vet thought 100% pancreatitis and admitted her for fluids, more antibiotics as her temp had gone up again and iv paracetamol, then she decided to xray just off the cuff and as they were x raying her the lab rang and said bloods -ve for pancreatitis and they saw something really weird in her stomach. I never want to experience the last 24 hours again !

So she’s staying in until tomorrow night because she has stitches in her actual stomach, the bill is way more than we expected. But it’s worth it. £3000 for a plastic takeaway container of madras to be removed from my dogs stomach

I’ve added a photo of my stupid dog

@sellotapechicken - you definitely go in for high stress days!! Glad your lovely dog is doing better xx

Tell me about it!

@sellotapechicken oooh i bet ddog is very proud of themselves too!

Been reading all the updates- we’re all very busy! I have the district nurses in twice a week dressing my wounds on my leg - they say it’s apparently the lymphatic fluid trying to get out!

Baths and showers have officially been dumped in favour of bed baths- it worked for the miners, it’ll work for me!

Gynie referral has arrived for 8?th April. They can’t to an internal as it’s so deformed and i can’t see how they’ll do an ultrasound as they will need to press into the tumors. There’s also a thought process going on by them that it may be menopause related since i had a radiotherapy induced menopause which happened over 3 months

Watch this space 😬

@batterychicken oh wow.
That is a very expensive takeaway tub.
Your dog is so cute though and I'm sure she's regretting her decision to eat the plastic tub lol.
Hope she's feeling better.

@Whatevershallidowithmylife
Your gynae appointment sounds complicated.
I hope they can work something out.

Has anyone gone a real weird sickly pale colour? It’s my legs especially. I wonder if it’s worth taking vitamins?

How is everyone?

Massively struggling with this chemo. Just cried all night. So fucking unfair and my bitterness is on a whole new level.

Week 1: sickness
Week 2: oral fucking thrush.
Couldn’t drink or eat at all yesterday. On the nystan now to try and get rid of it.
Now aching bones.

Cant actually envisage 4 of these poisonous infusions!

Bit worried about herbal. Nothing from her in months?

@GoldenDog1 will you just keep on with the chemo now?

@Florsilvestredelcampo the effects ( physical and psychological) are horrid. I can only manage one main task a day ( housework aside) Whether it be food shopping, seeing to my house rabbits, tidying the garden etc. That’s it then, I’m done in! Hugs, it’s shit x

@RedRosesPinkLilies enjoy your trip away.

@EachandEveryone what’s the dreaded wound doing? It sounds very unpleasant?

@Whatevershallidowithmylife how are you?

Old “ friend” tracked me down after I blocked her on WhatsApp. She accused me of being “ distant” and wanted to “ check in”
I want her to “ check out” !!
Not interested.

@Enigma53 say whatever you please to that ‘friend’
Being distant? Some people really really don’t get it, do they? X