Cancer Support Thread 83 - Here comes the sun (hopefully)

[Silkierabbit]

Welcome to a supportive thread for anyone with cancer to discuss how things are going, ask for advice etc or discuss life in general.

Please feel free to join if you are going through tests as well, hopefully they will come back all clear but if not we are here to hold your hand through the journey.

Named the thread in honour of the lovely LeslieKnope who did thread 62 in the same title who is sadly no longer with us but inspired me with how she was so lovely and kind with stage 4 cancer in her 20s and also the lovely PurpleUnicorns. Thinking of you both. Hopefully there will be some sun inbetween the difficult days.

May be useful to do introductions at start of thread. I am 49, lobular breast cancer, diagnosed Nov 21, after sent for tests then after being dismissed as nothing by GP in June. 46mm and 17mm tumours with 1 lymph node involved. Had 2 surgeries, currently doing chemotherapy, radio next then hormone tablets. 1 husband and 2 kids 16 doing gcses and 15 with SN and mute. 1 Maine Coone kitten, 3 silkie chickens and 1 indoor rabbit.

@AGreatUsername thinking of you today, in a few hours it will all be over and in a few days you'll be back home with your family. Sending love Xxx

@Silkierabbit I'm really sorry to hear about your struggles, hardly what you need in the midst of chemo Xxx

Thanks Fantasea Hope you OK. At least only 2 more weekly chemos to go and last one school is closed for DS, next one will be fun, gcse at same time as chemo and will go through whole school day plus kitten and rabbit unsupervised. I would love just to cancel next weeks but that would mean one on 4th and the lovely week in Cornwall from cancer charity is leaving on 5th and want to do things there. Could stop at 11 or do one after Cornwall but would mean in twice for bloods etc. And would be nice to go on holiday thinking finished chemo. The oncologist did say 11 may be close to same benefit as 12 but recommends 12 as standard course.

Got my bloods back and they are fine, lympocytes is low at 0.49 but thats it and menopause ones are all in menopause range I think, or post menopause but cant be post menopause. No periods on chemo, wont miss those though said could come back after chemo ends, none since March. Dd has afternoon exam, already had mr Floof being hyper playing football with a wrapper knocking everything is his path, very cute but would love to sleep as woke at 4.30am. Dd has taken him back.

Good luck today @AGreatUsername, will be thinking of you!

Thanks everyone, not a bad nights sleep to be fair, woke to take painkillers but I’m ok on the whole. I have just done my exercises which were bit ‘pully’ but I did them from my bed so not too bad!

love to you all xxx

Hi everyone. Surgery yesterday went well apparently. The 2 masses were removed and apparently very unusual looking (they took photos for me in theatre so I have delighted in showing all my family haha). There was a tiny spot on the omentum but she thinks it may be where the mass was touching it rather than spread. More worryingly, they also removed a couple of lymph nodes as they were harder than they’d like, but again it could be nothing and I have no idea what that means.

Ive had a terrible itchy reaction to morphine so I’ve been up all night itching despite two types of antihistamine.

Glad it’s over and you’re ok @AGreatUsername, sorry to hear about your itchy night though! Sending you lots of love and healing thoughts xxx

@AGreatUsername @TwoBigNoisyBoys I hope you’re both recovering well. I’ve been thinking about you both. Make sure you take it easy. I am not sure if you have any appetites or not, but now might be the time to have cake. You deserve it. Let those around you help out.

I was meant to go to an MDT meeting yesterday (my case, not me personally) but I had heard nothing all day despite being promised a call in the afternoon so I rang the lovely consultant’s secretary who said my biopsy results were not back and I’d be delayed to the following week. However I know my MRI results are back, but they said they were not discussed at the meeting.

Today I have been called out of the blue to say they have my biopsy results back and that my MRI results were, in fact, discussed at the MDT meeting. I’ve been called to go in to see the top guy at our hospital face to face on Monday at 3:30pm. I asked if I would find out if I had womb / ovarian cancer there and she said yes. Part of me was hoping she would say I was off the 2ww (as she had said before they would do) but she didn’t.

Yesterday I asked what the policy was ok relaying news. I asked if it was benign would they say in a call. The secretary said whilst they can’t give results out they do tell people they are off the 2ww which is essentially saying all is OK. So I had it in my head that’s what would happen next week when all my results were in.

Today she would not confirm anything to me. The secretary seemed very flustered and I felt wanted me off the phone. She wasn’t rude, in fact she was lovely, but it was this gut feel. Especially after speaking to her yesterday about relaying news.

Anyhow, I’m sorry to come on the thread pre-diagnosis and whilst you all have so much more on your plate than I possibly have. Please don’t think I’m insensitive. I’m just very, very, very frightened. Especially now.

I am reading all of your posts and just hoping you are all doing as best you can be and sending you my love and I am hoping I can hang here for a while if you didn’t mind?

I don’t know if it is good news or not. I just have this bad gut feel.

Once again, sending you all my best.

@OriginalFloorboards That sounds all quite worrying and this thread os also for those waiting for tests and diagnosis as well as those who have a confirmed diagnosis. Who knows the panic of the waiting better than us!
Pull up a chair and we'll hold your hand whilst you wait.

@AGreatUsername Glad to hear you made it through and brilliant news you got photos - exactly what I would want.
My friend is an ICU nurse and when I was telling her that I'd had a hole develop in the extravasation damage in my chest, the first thing she said was "Have you got any photos".

@TwoBigNoisyBoys Hopefully you've been up and about since your op, take the exercises very slowly though. I kept forgetting and reaching for a cup or glass from the cupboard.

Anyhow, I’m sorry to come on the thread pre-diagnosis and whilst you all have so much more on your plate than I possibly have. Please don’t think I’m insensitive. I’m just very, very, very frightened. Especially now

Honestly. Please don’t apologise. You are going through one of the most terrifying things life can throw at you. And if it helps, I very much believe the more people who voice how scared they are the better it is for everyone else who’ll come across our stories.

I never did manage to get much of a handle on my fear and I ended up under the care of psychiatrists even before I had my results. I’m pretty sure it happens to more people than we think.

I don’t know what else to say to as nothing anyone tried to say to me helped but I am thinking of you and no one here will think badly of you for being so afraid.

I've had good news of sorts - my haemoglobin is back in the normal range so I can continue on the lower dose 400mg of Olaparib. Just collected my next 4 weeks of tablets.

I will have another CT scan in a month's time to monitor peritoneal thickening and lesions on the liver. They can't tell if it's cancer or scarring from surgery. But it's been stable since surgery so my oncologist isn't overly concerned. My CA125 has been low too.

It's now one year since my debulking surgery. I felt things were so bleak at the start of my cancer journey. I know that it will reoccur at some point, but at least I can look cautiously forward to a new normal. Thinking of TwoBigNoisyBoys and AGreatUsername and wishing you a good recovery from surgery. * *

Thank you @MrsPnut @JellyBellyNelly I have just received my digital letter confirming Monday’s appointment saying also ‘feel free to bring a relative or friend.’ I haven’t had that on any MRI letters or biopsy ones.

Thank you for replying. It means a lot. Thank you for the hand hold.

@AGreatUsername @TwoBigNoisyBoys hope you are feeling a bit more with it today following surgery. Hope it was a success.

@OriginalFloorboards Hand-hold for you too. The waiting is awful, but we are here with you.

@AGreatUsername @TwoBigNoisyBoys surgery done - that's excellent. Good wishes for continued recovery.

I spoke to my oncologist this morning and now I feel like I'm having a panic attack. I feel like this more or less all the time but so much worse now. It was a routine checking in appointment: how I'm feeling & if she was going to increase dose of chemo. She's decided not to as I'm having bad nausea and gastric issues and was in bed two days this week. I'm on a week off now from chemo so I'll try and get it under control pre-emptively next cycle. I have chemo on a Friday and I start to feel dreadful by Monday and Tuesday. Wednesday the nausea lifted this week. I've tried every drug they've got, none of them work effectively, I'll be trying them pre-emptively, and CBD & THC. But she also told me my CA15-3 is massively elevated but it's sort of meaningless in her view, because yes I have metastatic breast cancer so it just means cancer in the body, it's not a marker of a specific cancer. But my entire lower abdomen and area below my chest basically hurts, and has done on and off, & I'm terrified it means cancer has spread to liver or bowel or stomach. They've checked womb, looked normal, but have to have cervical samples re-done by GP as I guess they weren't clear last time - no info. I don't have a hospital scan until July 3 & she told me results take 2 weeks.I already have scan-xiety. Again, I have a gut feeling its not going to be good news. Just huge panic the cancer is spreading; the low- dose chemo is not working & I'm going to die soon & leave my not-yet-4 year old without a mother.

I'm on a low-dose sertraline for anxiety can't bear to think about upping the dose as I already have so many drugs in my body and my sleep is awful which doesn't help. I don't want to start necking benzos either. They don't work very well as I'm quite tolerant & I need them to work for the occasional times I take them. Basically no drug is going to get you over this fear is it? I'm trying to breathe and concentrate on something else.

Aww sending love and hugs Mowly The anxiety is awful and mine is through the roof esp on steroid days on chemo. The only bit of hope is if you are on ondansetron I got pains like that from them (indigestion, chest, bowel and bleeding) and when I reduced them to 2 a week it went rather than the 6. Though if you are feeling sick its difficult but I found experimenting with meds helped and generally less meds less side effects even though they keep giving you more. Its difficult though as you need to be on more than me. I am not on anti-depressants as they just give me side effects, I have not got any great solutions for anxiety - I am having a pimms or archers and lemonade each day until the end of gcses but that's not great solution but knocks me out a bit. Anti-histamines make me sleepy. Exercise 20 mins a day helps with some positive effect though given up on chemo. Thinking about it 1 day at a time, its still rubbish though esp stage 4. Trash TV, days out when you can, music, Maine Coon kitten is amazing, recommend one of those, silly boy that he is. I felt like jumping off a cliff yesterday with chemo, school calling police as they keep losing DS and gcse combo and no help for SN and fearing will die and DS will end up NEET and today they are excluding him from gcse trip, lovely boy, gentle just mute and frightened so he runs away if with different people and they won't give him 1 person and no-one gives him a hug. Anyway MC cheered me up and got me out of that with his footballing and clawing DSs shirt down and sleeping on it. I hope you can find something.

Hope recoveries from surgery go well and hope its not bad news Original though if it is there is support on here. Would also recommend charity SomethingToLookForwardTo for little and bigger things to cheer you up.

Love to all.

Thanks so much @Silkierabbit I would love 10,000 Main Coons for my anxiety but my two very normal cats might be a bit peed off. They are lovely though and hang out on my bed all day when I am in bed and stroking them is nice & relaxing, although the old one licks me to death and he stinks so not soooo soothing. You are right about the exercise, that definitely helps, and I will aim to do some gentle yoga this afternoon. Not being able to use right arm with picc line in is a ballache I can tell ya but I can work around it. I hope it's the anti-sickness meds, good call. I cycle through ondansetron; cyclizine and last time they gave me aprepitant but only two, because it seems to be the most hardcore of the most hardcore. I took that Monday and Tuesday night. I took nothing yesterday and I still hurt but fuck knows it could be anything I'm also on blood thinners twice a day, those won't be without side-effects.

You've got so much on your plate, don't blame you for having a lovely drink. I was drinking a bit, hmm, fairly regularly too, when my parents were visiting ... they are hard-core. But they've gone now & my lovely sister is back & drinks much less, so I am trying not to drink as it just makes me more anxious at the moment. Especially as no chemo until next Friday woo hoo. Basically I do whatever I feel like even against advice because I'm like stage 4, fuck it. I had a very small amount of sushi yesterday. Ha it would be ironic if everything hurt because of that! Or my previous boozing! I find a little drink, a bit of THC and diazepam gets me over the post-steroid post-chemo day, totally not conventional drs advice but I am not anxious on that day I can tell you. But obviously can't do that all the time or when DD is around. I told my oncologist I was going to turn to cannabis for nausea as i had exhausted all the drugs and she said she couldn't condone it but off the record she said it can work well. I guess the good thing about the appointment is my bloods are good, she kept saying how great they were. Obviously I'm just focusing on the awful tumour marker results, what good is my good blood if I'm dead?! 😬ah well. Got loads of school stuff for DD to sort out, she starts this September, that will be a good distraction too.

@mowly77 Aprepitant was what I was given as my main antisickness and most people manage with a large dose an hour before chemo and two smaller doses over the next 2 days. I often didn’t even need the smaller doses but I got lucky in the nausea stakes. I did however get the most awful bone pains on Docetaxol that not even morphine could shift so cancer giveth and it taketh away.
I too did whatever I wanted because some of the nurse advice was batshit and way out of date. One told me I couldn’t have a soft boiled egg because I’d get salmonella, I asked her how when lion stamped eggs are from hens vaccinated against salmonella. She didn’t know the answer to that, she also told me not to eat soft cheese because I’d get listeria, when I asked about bagged salads as they are the leading source of listeria in this country, she said they were fine! I told her not to bother telling me anything else because I was just going to ignore her anyway. DH got food poisoning once from a cheese and onion pasty, that wasn’t on her banned food list.

I am enjoying my day off this week in the sun, factor 50 on of course. I have some fizzy water and a bowl of crisps - living the dream.

Oh yeah, I got food poisoning from bagged salad back in January. I only had a few leaves on a wrap but yep, was barfing by evening.

Hospital called today (while I was having Boots refill my letrozole because I was NOT going to take the Cipla generic, and no, sir, I dont care if it takes you five minutes to refill it, its the only damn drug I can control the side effects of, so refill it with those blue boxes on the shelf I can see over your shoulder! - I was nice about it tho) because they are rearranging appointments due to the train and tube strikes next week. Thank god! I had my breast radiotherapy 3 month check up scheduled for Tuesday and was wondering if I was going to have to walk all the way there. For once to not have an appointment on a strike day will be fantastic!

@mowly77 have any of your CT scans mentioned gallstones? My latest one noted I had a lot of stones in there, which explained the agonizing pain in April and how long it took for my digestive system to recover from that.

Gonna be hot down here in London tomorrow and the cats are flopped in the garden in the cool dirt the last few days. Which means we then dirt tracked all over the house and our boycat looks like PigPen with dirt all over his little face and paws. sigh

The other thing Mowly is I found the steroids sent my anxiety through the roof not that it was good before but it went to like a nuclear bomb was about to drop on my house level. Reducing the steroids helped with the oncologist. Let the chemo line know esp if its worse on chemo days or up to 72 hours. I just have my chemo steroid. But generally I think they give more meds than you need and more meds more side effects and I found less meds was better. Though obviously check but now I have Mon pax and 1 onda, 1 steroid and piriton given there then 1 more onda later that week and that is it unless feel sick and take another onda. I got awful chest pain, indigestion, constipation, bleeding from the 6 onda a week they had me on originally and their solution was laxatives but seemed daft to me and just reduced the onda and was better. Though I dont get much sickness, have a sickness phobia but i am always the person on the stormy boat not being sick.

Just had an Archers and lemonade, really should not but passed caring at this point and hopefully last chemo 27th June with 1 on 20th as well.

Trying to sort things for Cornwall though cat hotel is full so need to find a friend to take Mr Floof for a week. Rabbit and silkies in fine and all activities booked. I also eat what I like as I live life on the edge like that, lol. Sweltering under a fleece duvet here as Floofs choice of bedding though chemo makes me cold which helps. At least no gcses until Monday and just that week to go now.

@MrsPnut The nurse advice IS batshit! I was told all that crap about soft boiled eggs and soft cheese too & just quietly decided to ignore it. I do keep accidentally hard-boiling my eggs though so maybe my subconscious is also batshit.

I do only seem to get (delayed) nausea two days a week so I'll take the smaller doses of aprepitant next cycle on those days and see. If it doesn't work I give up.

@Silkierabbit I never got on with steroids either. Last time they had an awful effect on me too, so also just take the chemo steroid. The piriton they give you with it is an uncomfortable mix of whacked out and anxious but the whacked out wins mainly. But I've been diligently saving the boxes of steroids they give me because they are my final recourse re: nausea and possibly energy on those two bad days. I might experiment & take one next cycle on a nausea day & if my anxiety goes sky high I'll know never to do it again. Yes agree — the less medicine the better. All the bloody side effects do not help anxiety around cancer.

@HerbalRefreshment I haven't had a CT scan yet that would take in the gallstones ... only one chest CT at diagnosis in March. So the full first CT is not until July. Good call though, if gallstone-like symptoms persist I shall get it investigated sooner. & interesting about the different brands of letrozole too. I've heard that loads.

I had a chat with my sister about my anxiety, a lovely play with DD in the bath, and a small vodka & tonic & diazepam cocktail & feel a bit better. Hopefully tomorrow I won't feel quite so crazed. Too hot to be anxious really. & @silkie I wish I was your neighbour I would love to look after Mr Floof! It's great the end of your chemo is in sight & your holiday in Cornwall is coming up.

Love to all.

S@mowly77 sorry to hear you’re having a panicky week, your scan results sound so far away from this side of things! Nothing wrong with a little drink to take the edge off.

@OriginalFloorboards fingers crossed for your appointment on Monday.

I had my worst day yesterday, 48 hours post op and I was feeling awful all day. Could barely move. But, I want to go home today so had all the painkillers removed except cocodamol. I think the main pain is my back, this hospital bed has crippled me, my whole back in just agony. I’ve woken up feeling less tearful this morning and packed my case in the hopes I can be released this side of sun down. Results appointment pencilled in for 6th July. Not sure if I said that already in my last post, lots of drugs. Not sure what I’ve said at all really!

@mowly77 scanxiety is the worst 😕 I’m so sorry to hear you’re having such a rubbish time. Second all the comments about the chemo drugs and steroids causing pain and anxiety…the anti sickness drugs I was on made me feel awful, and the aches and pains were horrendous. Sending you lots of love xxx

@AGreatUsername hope you get to go home today, the hospital beds aren’t comfy are they! Good luck for today xxx

I keep trying to post and the bloody pages refresh halfway through and I keep losing it, STILL! Trying to reply to everyone’s posts. Not very successfully 😩but sending you all love, as usual xxx

Hello all. After a long period where I've only checked in briefly once or twice, I'm trying to catch up again.
I'm now 68, dg with ovarian cancer - carcinosarcoma which isn't a good kind of tumour - in May 2019. Usual debulking surgery and chemo. Lung metastasis 2020, resected, more chemo. Started PARP inhibitor (niraparib) end May 21, bloods went haywire, paused, dosage halved to 100 mg.
Thought all going fine, feeling pretty optimistic for a few more years, then about 4 weeks ago bloods dodgy again. Niraparib paused, more bloods, testing for this and that, haematology team thought all due to low B12 so put on booster course - have had 5 of six jabs but was told on Wednesday bloods no better. Now have appt in haematology clinic next Wednesday, 22nd. I'm strongly suspicious now that I have a blood cancer - well, that would be the worst, it could possibly be some less serious blood disorder.
It's crap not knowing, and what I am really angry about is that our holiday plans for the next few months might get buggered up - as they did in 2019, 2020 and 2021.
I live with my (woman) partner, we have quite a lot of lovely family between us and a great friendship network, so plenty of positives.

Sorry that's so long. I am updating my spreadsheet (!) and hoping to check in with some of you soon. Only got to p1 of this thread and see there are several of us with OC. Good wishes and love to all.

Thank you everyone who replied.

@Silkierabbit @MrsPnut @mowly77 @TwoBigNoisyBoys

There are so many of you on this thread with so many things happening to each of you. In real life I can usually offer great advice and comfort people, make them feel better or put an arm round friends when needed. I feel at a loss on what to say to you all for the first time in my life. I don’t understand the drugs or their side effects and I all I want to make things right for you all or give you words of comfort yet I can’t. I’m sorry. I’m just sat on the sidelines feeling pretty useless. I am reading every single post. I am here with a virtual hug for those of you that need one. I am very grateful to hang out and be here. Thank you.

I have had my digital letter to follow up the phone call from my consultant’s secretary. It says I can bring a relative or friend. None of my other tests said that. Maybe it’s standard. Maybe a 3:30 appointment at the end of the day is still good news. Maybe I’m overthinking. I think this part is awful. Would they leave me from Weds to Monday to tell me bad news?

I’m suffering on and off pelvic pain, different to my usual endometriosis. Yesterday was a good day and I was able to ride my young horse with my daughter on her pony. We had such a lovely time nattering together around the village. All my horses are at home. I am so grateful for that. They ease my anxiety, as do my cats and dogs…although not my Bengal as he keeps trying to bring rabbits into the house. I keep trying to save them. I’ve told him to stick to rats.

I am rambling. I’m frightened. I want Monday to hurry and yet I don’t want Monday to come. Such a mix of emotions. I keep thinking how will I look after my family and my horses (they are very physically demanding mucking out, doing hay nets etc) and how will I tell my daughter? All of this is overthinking. Maybe my consultant wants to give good news face to face.

Can I ask you how to keep myself from falling down a dark hole pre diagnosis and also if it is ovarian and womb cancer what questions shall I ask in the appointment? I thought I’d try and write things down ready.

@AGreatUsername I’m sorry those beds are uncomfortable. You know they like to hang around to discharge at the end of the day so hopefully you’re in your own bed by tonight. Thinking of you.

Thank you everyone. Just for listening when you all have so much on. You really have no idea just how much you are helping me.

Sorry I can’t help you all much more.

xx

Sorry for everyone suffering at the moment. Ive been away for a short break and I hardly thought about my cancer at all, as soon as I got back though and really relaxed Im back in the real world! Bit hurt that dog ignored me totally when I went to collect her from the kennels, think she is slowly forgiving me.
I hope you all manage to cope with the heat.

@OriginalFloorboards I completely understand the feeling of not wanting to know and and the same time wanting, I still have this now over two years later. You're in the worst part now which is the waiting, worrying about all the 'what ifs' and how you'll manage everything. I wish I could offer something to ease your anxiety, I am medicated with beta blockers which I've taken every day since my troubles started, they just 'take the edge off' for me, but of course don't remove the actual thoughts I have.

My diagnosis was something they had said was 'highly likely' at my first gynae referral and I had 3 months to 'adjust' to this before it was finally confirmed due to a huge amount of faffing around with my biopsy, second opinions and of course, the excuse of Covid. I was in a very dark place during this time so wish I could offer some advice to prevent this.

With regard to your appointment I would start to jot down some things as they come into your head, you have so much going on, it's so easy to forget something which suddenly comes to you. Whilst you're in the appointment, write brief notes as you go, it's so much to take in at the time. They will have a plan in place for your treatment, if indeed it is that which you need, which will include a rough timeline. You will have an idea of the thing which is 'next' and I would pin them down to the time when this is likely to happen and when this appointment letter or phone call will come. If there is one thing I wish I could change in my management of my condition early on was my lack of assertiveness, but this is so difficult when you're in physical pain and so consumed with anxiety. I was made to feel 'grateful' for being treated for stage 3c OC because 'there is a pandemic going on, don't you know'. Once they started dragging their heels over starting my chemo, which inconveniently went over Christmas, I found my voice and it began a few days later, would you believe 🙄. I think the advice I would give you from the start is to speak up for yourself and be 'that person' even if, like in my case, I avoid any sort of confrontation if at all possible.

@Bloodybridget so nice to see you (I was FizzyOrange) and I'm so sorry to read of your update. I'm really hoping it's not what you fear Xx.

@AGreatUsername day 3 was the worst day for me, which I attributed to their insistence I had suppositories (I hadn't eaten anything but soup) and had the most dreadful burning abdominal pain. Day 4 was the day I felt better but yes, I had the lower back pain too, I kept sliding down the bed and must have used my back as well as my arms to pull myself back up. Really hoping you can get home to your family later today.