Roll up, roll up and join the lacies for CANCER SUPPORT THREAD 59 - anyone with cancer is welcome (and those awaiting test results)

[WhatWouldLeslieKnopeDo]

Hello everyone,

This is the cancer support thread, which has been running for many years under different names. Most posters have breast cancer, but various other cancers are represented too! Whatever cancer you have, feel free to join us. We also welcome those who are awaiting test results to find out whether or not they have cancer. We know how difficult the waiting can be and we are happy to hold your hand. Hopefully you won't need to join us permanently

Feel free to ask any questions. There will usually be someone who knows the answer or will know where you can find it.

Whatever you do, stay away from Google!

You can post anything you like here. We don't mind swearing or complaining or angry ranting. We aren't brave or inspirational and you don't need to be either. Nobody signed up for this, but we support each other as best we can

The previous thread is here

Thank you so much Leslie and I’m I will definitely heed your advice about keeping one step ahead. It makes a great deal of sense. Hope you’re feeling much perkier tomorrow. 💐

Freddie thank you too. They are far more resilient than we tend to given them credit for so your words really help, it’s all so rubbish though, isn’t it.

I’ve just spoken with my friend who’s coming with me and she’s bringing her dictaphone and ready to take shorthand too, so we can debrief afterwards.

wombat thank you for good wishes for tomorrow. I’m now back to strangely calm, so hopefully I’ll get a half decent sleep in prep for tomorrow morning’s appointment.

Leslie have just read your comment to DH and DD overheard and said "Well that's dumb, how can you call if you are unconscious?!" :)

Another one here who wants to thank you for keeping on top of all this on the thread. Don't know how you do it xx

Biscitti this is a good basic book for the younger children. DD was just 10 when she read it and she took it into school to share with her teacher.
OK for some reason I can't post web links... Search for the Secret C in AMazon books..

I have birthday fairy duties to do tonight to put presents and decorations out... Really not feeling it though :)

Thinking of everyone else.

Fluffy thank you. Will have a look now.

fluffy she sounds fab. Good luck with the birthday fairy duties. Personally I find occasions always feel a bit flat now. Partly because I really want to make them special and there’s all those whirling what ifs. But hopefully you’ll feel it when you see her face in the morning :) happy birthday fluffyDD

Biscetti I hope you manage to sleep tonight. Very best of luck

OOH GP asked me what antibiotics to prescribe and how many days thankfully my dad found a late night pharmacy so I’ve started them. I’m feeling lots better after a very dozy day!

Goodnight everyone

Glad to hear antibiotics are helping Leslie. UTIs are so miserable. I had a friend round this afternoon and we were discussing, in a very non-morbid way, the relationship between pain and wanting to die. She talked about an occasion where she managed to contract a UTI while at the same time having a very painful haemorrhoid situation. She said as she gingerly lowered herself down onto the kitchen chair she thought to herself "if I died right now I wouldn't mind"

I'm newly prone to UTIs as my vaginal tumour is pressing against my bladder making it difficult to fully empty. I managed to get my GP to give me a "just in case" prescription which I have cashed in, so I now have ABs to hand if something starts up on a Friday night, as these things do. Small comforts.

It's interesting to read the perspective of people who have cancer while feeling very well. In my case, my symptoms are what prompted the investigations and eventual diagnosis, so for me cancer is associated with huge pain, discomfort and fatigue - so bad that (like my friend above) I would be very happy to just die right now. DH and I are currently struggling with that issue. Although on morphine, I get frequent pain break through, and obviously it distresses him to see me marching up and down the bedroom crying in pain and expressing my strong desire to drop dead. In every other way, I am very fit and healthy - good BP, heart rate, bloods, oxygen levels, cholesterol, etc, etc, and there's every possibility that my body will put up a very strong fight against the cancer, but because of the pain my mind has started to give up ...

^ Sorry, that's possibly not the best Last Post for a Sunday evening.

Not sure if the humour is coming across.

[Need to stop late-night philosophical cancer musings!!!!!]

Hi all,

I posted a few days ago to say hi. I've got my breast clinic appointment tomorrow and although I'm not overly worried my brain won't switch off about what's going to happen - the clinic sent out loads of information and I'm completely overwhelmed by it all.

I'm still getting leaking and some blood from one side and the solid area is still there so I guess something is amiss but Google (yeah I shouldn't have gone there!) Tells me that in my age group it's nothing to be concerned about. Let's hope Dr Google is right

I wish you all well, I'm in awe of what you are all dealing with and, with the greatest of respect, I hope my time here is brief. But for now I've just to get through tomorrow.

Good luck PlayonWurtz tomorrow, hopefully it is nothing to worry about.

Farside :( about your pain.
I'm knackered from this lt of chemo and have all the lovely meds side effects and stoma to deal with but fortunately not in pain, although I do have a few moments but nothing that lasts long or needs medication.

Leslie DD is generally lovely :) She had a dance exam today and I really felt for her as she said she messed up and went the wrong way twice! She worked so hard and knew it all before she went in. Hopefully the other dances she did made up for it.

It's actually Ds birthday. Pokemon decorations are up and presents ready on the table for the morning.
He's 7 tomorrow. I'm trying to make the most of special occasions but it is a bit bitter sweet not knowing how many more we will get together :(

DDs is November and last year was utterly shit as I was in hospital recovering from my bowel operation. It was the first time I cried about anything (in front of people) since they gave me the diagnosis. Although the physio who I cried to was amazing and got us out of the ward and used her own money to get a cake and drinks and snacks from the M&S in the hospital so we did get a mini birthday party but I hated not being at home with her.

I have a scan next Thursday instead of chemo yay, so everything crossed for good results and a long break.

Hope the ABs work Leslie and Farside

LittleGreycat are you starting treatment tomorrow? Hope it goes well and everyone over their colds at home. DD has a bad cough at the moment, worse at night bless her.

Hope the birthday, radiotherapy and antibiotics all go according to plan for you all and that everyone manages a pain-free, worry-free sleep tonight. Biscetti my twins had just had their 10th birthday when I was diagnosed. We waited until we had all the information about my diagnosis, prognosis and treatment plan and then told them on a day where they wouldn't have to go to school so we could spend some time with them talking through their thoughts. We informed school and some of their close friends' parents, so they would be prepped to support/answer questions. We followed Macmillan guidelines about telling them as much of the truth as we felt they could handle. The Secret C book was helpful for them to read. We asked them to ask us questions rather than search the internet because every case is different. We all had a cry and promised to try to keep talking, even if our feelings were a bit ugly. I promised I wouldn't lie to them, so they never had to wonder if they were being misled. It's the shittest conversation ever, but it was the right approach for us I think. Wishing you all the best for your meeting and afterwards xx

Good morning everyone

Thinking of you today Biscetti I hope it’s the least bad it can be. And we are here for swearing/virtual cake/anything you need.

Good luck today LittleGreyCat I hope your first radiotherapy goes well

And fingers very firmly crossed for your appointment PlayonWurtz :)

fluffy sorry for the mix up happy birthday to your little boy. I hope he enjoys his day. Pokemon decorations sound fun! for the bitter sweetness. The physio sounds so lovely :) when will DD find out about her exam?

TheFarSide huge sympathies with the pain. It must be very miserable. I hope they can get that better under control I get pain from adhesions, but I’m getting much better at recognising the warning signs and treating it immediately. Personally I don’t think you’re “giving up” at all. You’re in pain. Our instinct is to avoid pain. It seems healthier to recognise those feelings rather than pretending you don’t have them. I think until you’ve experienced all consuming pain it is hard to understand the effects on your mind. I’m rambling away. It’s meant kindly

nicky that must have been very difficult, but it sounds like you handled it really well

I hope everyone’s week has got off to a good start - anyone likely to be hit by the storm?

And how are you feeling today Leslie? I hope your meds have kicked in.

Seems like everyone is having a tough time right now so I'm sending , positive vibes, understanding and big hugs to everyone who is having a horrible week.

I’m much better thanks Twitter :) I will have a lazy day today I think. How are you? I hope the injection side effects aren’t too nasty

Thanks for the support lacies. 1st session is at 2pm. I wish they'd time things better for those of us who have little ones not yet eligible for childcare! Ho hum. I shouldn't complain, just feel like the next 6w are going to be really hard work with a 2.5yo, 11m old and no driving licence!!! Still, just being grateful they can offer the treatment. That's what i should be focused on, I know.

Good luck to everyone with appointments today. I hope you can all come away with some positives, whatever the news.

Here's hoping for a good week for all!

You can complain about the downsides (you’re having radiotherapy to your brain!) whilst still being grateful the treatment is available :) no need to always be chirpy here if you want to vent. What a palaver with childcare. Do you have people who can help out?

I’ll be thinking of you at 2pm.

Hello,

Well on the whole I don’t think today went too badly. Lovely consultant was lovely again. Explained the PET Scan to me which showed that there are three spots of cancer in my left lung, with mets in my lymph nodes. All contained within my mediastinum, which is ace. Doesn’t like to do stages as they’re are terribly misleading in cases like mine. Mets doesn’t always mean Stage IV. But if he had to label he’d stage at III.

Because I am very young (his words, I’m middle aged FFS!) and in otherwise excellent health, I will be having chemoradiotherapy at the Marsden starting straight after half term (my request, granted with no issue).

Seeing consultant radiologist next Monday to sign my veins away. If my (wished) proposal of dates is suitable, radiotherapy part of 6 weeks will start mid December. 4 cycles of vinorelbine and cisplatin chemotherapy (3 week course).

He refused to say a true prognosis as he simply can’t at the moment, but will review as treatment progresses. I’m certainly not going to take this lying down, even if I will be lying down through sheer exhaustion.

It’s still really shit, but good things happen all the time in medicine and I’ll take what they offer and run with it.

I’ll be after tips for managing chemo/radiotherapy side effects please, but appreciate everyone reacts differently.

Leslie I hope you’re feeling much better this afternoon.

fluffy happy birthday to DS 🎂

💐💐💐💐💐 to all of you for all the shitty shit you’re going through and huge thanks for your really helpful and comforting posts responding to my initial one. They honestly helped today go so much easier for me.

Biscetti that sounds like better news than you’d been preparing for, so that’s always good :) I’m glad you have a treatment plan and your consultant sounds really good.

Lots of chemo side effects are similar, but they each have their own particular ones so you might find it useful to read up on your regime on the Macmillan website, if you’re someone who likes to know everything.

For now though just be kind to yourself. Even though it wasn’t worse news, it’s not exactly a laugh is it, so give yourself a chance to come to terms with it all

Biscetti It's good to hear that you have a plan and know what is happening. You sound fairly positive about it

Playon and Littlegreycat I hope you got on ok today

FarSide That sounds really tough. I hope you find some relief.

Leslie I am pleased to hear you are feeling better.

for everyone

How are you doing Wombat?

Hi Leslie I'm impatient for my appointment on Thurs. I just want a diagnosis and a plan for how to deal with it. I am imagining all sorts of things really. Thanks for asking

The waiting really sucks. Once you have the facts you can rein in your imagination a bit. Do you have any distractions? I’m thinking of you lots, even if I don’t mention it. It’s hard sometimes to find a balance between being supportive and being pushy

You don't have to worry Leslie. You are very supportive. I am working through the day, so that is a distraction.

Wombat I'm thinking of you, too. (Thank you for the !)

On the basis if my scans, the CSN attached to the MDT of my local hospital rang me and was v gloomy. No surgery, just chemo. (I was up a ladder at the time, pruning the hedge.) I think there is a tick-box index for OC, and I must have scored quite high - age, bloods, scans. But it was all a bit of an unprofessional mess. I was transferred to a teaching hospital and had 2 weeks to wait, thinking the worst. I'm a head in the sand, don't tell me unless I need to know sort of person and the furthest I'd got on Google was 99% of ovarian cysts are harmless, so it was a bit of a shock. My poor daughter is the opposite. She scoured the internet and actually read about Borderlines - but discounted them because it said 'prognosis is exceptionally good'. As far as she was concerned, it was bound to be worst case scenario for her mother. We had these ridiculous fake chirpy conversations on the phone. I was planning a Chrissie Hynde wig.

I'm so sorry you're in this shitty situation, but if there's any silver lining, it will be good to get the whole thing done in one op. Easier on the nerves than hanging around in limbo-land waiting for results. Btw, my GP gave me valium and a low-dose anti-d, after 2 days of not being able to eat anything but a banana and a chocolate flake. They helped a lot.

Best wishes to everyone else. Back to lurking, now. I'll pop in if anyone has a Borderline query that I can help with.

Thyme what a palaver! Good job you didn’t fall off your ladder

Wombat I hope work is a good sort of distraction and not stressful

My job isn't stressful Leslie, thankfully.

Sorry to hear how much you were messed about Thyme

Hi ladies

I hope it isn't insensitive but I just want to shout out to the world that I've finished radiotherapy today. All the radiotherapists were really happy, cheerful, good luck, etc. The family, however, all a bit meh. Husband hasn't said a thing. I'm not sure what I expected but sometimes you do want a bit of recognition that this is IT. End of. Feels a bit weird tbh. I've been in the system for so long, although not having chemo but having four ops, that it's a bit like something you long for happens but makes you feel a bit wibbly because in your head you just are waiting for the next load of bad news.

I'm whiffling on. Spent huge amounts of money on sparkly new burgundy and silver shoes and black patent ankle boots. Oh, and a new dress. - also sparkly😳😳😳😳. Eeek.

Leslie, UTIs are the pits. Hope you feel better soon. Gentle hugs to everyone. Chewing - think of you often.

Watching bake off now. Off on a jolly tomorrow. Anyone in Chester on Thursday lunch, come to the Cathedral to listen to husband.