Cancer Support Thread 97: support for those diagnosed and going through treatment

[LiliJilliBobs]

Cancer support thread 97: support for those newly diagnosed and /or undergoing treatment…..
Thread 96 is pretty full - here’s a new one

Morning all ,

sorry I’ve been off grid but my hands are bad and typing is difficult.

I have read your updates and am sending huge (but gentle) hugs to you all.

I’m honestly not just existing on cake 😊

I would be getting that emergency appointment tomorrow morning @FcukBreastCancerYour GPs response is rubbish.

what a nightmare chemo session @cantbelieveIamhere, I’m glad you were well looked after and the curry was good. Happy belated birthday to your son!

thank you @dancingwhilstfacingthemusicfor explaining all of that, I appreciate you taking the time. I was thinking that they might try and tie it to my regular oncology clinic appointment which is three weekly. Also I will still go to chemo ward four weekly for my Zoledronic acid infusion.

I have done too much in the last few days and have crashed. After chemo on Friday (and my first Zoledronic acid infusions) we went to the theatre (tickets booked months ago). Saturday we put up Christmas decorations, and did usual domestic chores. although I mainly directed proceedings I still did too much. I was in bed by 8.30pm!

@ForestFlowerFairyI’m thinking of you. You did everything you possibly could. Your dog simply needs more specialist support than you and your family can give her at the moment 💐

I hope you have some decent pain relief now @Sbmppand are enjoying your family’s visit.

How are you feeling today @cannaecookrisotto? The fatigue is really crippling isn’t it? Get lots of rest. Your DH can cope with all the household stuff, just take it easy please.

@Nonamelassi hadn’t thought of extra strong mints, but I will get some. Good tip, thanks.

welcome @Inthebasement. I’m sorry you are here but please don’t hide at the back or feel lonely as we are here for you 🤗 The waiting is shitty isn’t it? I hope your consultant can give you positive news next week.

Firstly I'd like to thank you all for you're lovely comments about our dog. I cannot get over how much I love the little pink nosed terrorist.
So, after writing my last message I had a light bulb moment, we know she gets scared by new things and it's anxiety/panic that perhaps there's anxiety meds we could try. So, I drove her to the vets (very stressful, she was terrified) and long story short vet believed anxiety meds were not right for her and that we were making the right choice returning her. She was fully restrained the whole time due to her trying to bite everyone. He did however give her some sedatives for the journey Saturday.

My drive Friday was interesting, despite not taking any oxycodeine I was aware of me not being...safe. Best left at that!
My husband I'm pleased to say DID step up, I think her being sedated and my explaining my driving wasn't the best he agreed to go, and I'm so pleased he did because the staff at dogs trust were spectacular.
I cannot express enough how lovely they were, her original fosterer is taking the lead with her, she's already booked in with the vets to determine if her neurological issues that affect her mobility are also affecting her behaviour.
They will give us updates and also asked IF she can be rehabilitated would we take her back, which we said was a maybe, based on my getting the all clear, we absolutely couldn't give her more disruption to come back only for me to get sick again, but realistically her being rehomed or coming back to us is months away. The fosterer was so supportive of all we'd done with her in the home and her progress and we felt so much better having spoken to her. Cried most the time, and now home keep finding toys or things that remind us, house feels empty without her beds, crate etc

But long story short, really impressed with dogs trust but I feel like crap. None of us were this upset when I got my diagnosis.

I'm going to take some time to properly read the thread, hello to all the new people, I'd love to tell you cancer is my biggest issue but I seem to roll from one disaster to the next. Hoping you're all as well as can be considering being here

That last message was a ramble and didn't make much sense.
To clarify, I drove Friday to take the dog to the vets, that's when I realised my driving wasn't safe.
Saturday returning her to dogs trust my husband drove.

Oh bless you @ForestFlowerFairy . I'm glad for you that the handover is completed, but that sounds very emotional.

We got ourselves involved with a feral cat a few years ago and it broke our hearts like we didn't know would be possible.

I'm glad your dh stepped up with driving.
I'm not sure I have any informed advice, other than allow yourself to grieve for ddog and rest. Un-mumsnetty hugs to you

@ForestFlowerFairy ir wasn’t a ramble !! . she’s back with her foster carer and the dogs trust aren’t giving up on her , that sounds like a pretty good outcome when all’s said and done.

Sending you a handhold, when we lost our dog we were so devastated, I would never have thought it would hurt that much.At least you know she’s being well looked after though. Take care.

@ForestFlowerFairy you did more than many would do, well over and above for the pup, and in difficult personal circumstances. I hope that they can find some way in to her behaviour.

We are really missing our dear old retriever but it was his time. We’ve finally moved the new giant fridge into place in the new kitchen, revealing the place where we used to have his bed just weeks ago. We all stood there very emotional and very quickly moved the furniture round. These dear hounds
(love that pink nosed terrorist) are so very special to us.

@ventress I hope they manage to get things lined up more efficiently for you than they are currently doing for me - although god bless science! I’m there tomorrow for blood and a ribocyclib review, back next Monday for Zol, then back again Fri/Mon for the next bloods and ribocyclib start. It’s an hour round trip each time plus waiting, plus consult. It does put a real squeeze on work and family things but I’m appreciative of the extra help to keep the unwanted visitor well evicted from my body.

I hope your MRI was okay today @cannaecookrisottoPlease have a relaxing evening and try not to stress 🍰

i am sorry about your gorgeous retriever @dancingwhilstfacingthemusicthese beautiful boys and girls attach themselves straight to our hearts. I hope your appointment today went well. Three times in a week! Actually I’ll be there three times this week and next week, I refer to the hospital as “my second home” only partially joking. I’m very lucky that my company, and DH’s are so accommodating.

I do hope all of appointments are helping you to kick that bastard cancer out once and for all.

I’m pleased that your DH drove you out to Dogs Trust @ForestFlowerFairyI know I wouldn’t be safe to drive so far either, plus the emotion would have made you even more wobbly and unsafe. I am sorry about your dog and I’m glad that her original carer can take her in and help support her and give you updates. I hope you are as okay as you can be today.

Evening everyone. May I join you?
Diagnosed with colon cancer last week at my colonoscopy; CT scan set for this Thursday and then the MDT meeting on Monday where they'll discuss what to do with me.
Still in shock and adjusting to the new label of 'cancer patient'. You always think it'll happen to other people, don't you?

Very, very scared, but on the out am my usual capable, upbeat self. Anyone got any tips on how to survive the long lonely nights when you wake up at 3am and can almost FEEL the fucker eating you alive as you lie there???

I’m very sorry @watchadewinbut you are more than welcome to join our club that nobody wants to be part of. I hope your ct scan goes well on Thursday. Do you know when your oncology appointment will be yet?

For me, I deal with 3am by reading until I fall asleep again. I’ve started using a kindle for this reason - just easier than a book and book light and trying to find my reading glasses all while not waking DH up.

Were you referred following a positive FIT test? Hopefully it will have been found really early and you can start on your treatment and recovery quickly 💐

Hi @Ventress, thanks for getting back to me.

Yeah, it was via the screening programme, but I'd gone to the GP back in September with abdo pain and been diagnosed with shingles (as the rash had come out that morning, coincidentally). The pain had continued and I'd been putting it down to the shingles. Then my poo test came through the post and, of course, that showed blood which triggered the whole process.

I do read when I wake up in the night, but I still struggle to go back to sleep. I'm sure it'll be better once we have a firm treatment plan in place. Like others have said, this meant to be the worst bit, isn't it???

@watchadewinhello, and welcome to this crappy journey - I've had a lot of 3am wakes. I always get out of bed if after half an hour if I can't get back to sleep.
I started journalling which helped.
I also used chatGPT to go through all the fears. Though as you're in a sensitive place and had horrific news I do want to follow that with saying, yes it helped with midnight worries but I'd always follow up with talking to the radiotherapy nurses or Macmillan nurse. It helps at 3am, but it isn't always correct or 'qualified' to offer emotional therapy but for light support it's helped me. If you use it, try testing when you aren't feeling too vulnerable.

My final thing is podcasts, I feel terrible saying it but my friend started a podcast and I haven't managed to get through a whole one yet. I've no idea if it's boring of if it just works to send me off!!

I’d forgotten about podcasts as a 3am go-to @ForestFlowerFairy. They can work. Reading works sometimes although only last night I started reading at 3.30am and was still reading at 6.30am!
I love that your friend’s podcast puts you to sleep!

I haven’t tried journaling but it does sound very cathartic.

Shingles is horrible @watchadewinare you over that yet? Before my current cancerous state shingles is the most awful I’ve ever felt.

Waiting for appointments and treatment plans is the absolute worst. Once it’s all started, however rubbish it is, you feel part of a process that is working toward the aim of ridding you of the cancer. You will be on this path soon .

Thanks @Ventress our floofy hounds go straight to the heart.

I have had my two-week Ribocyclib review - bloods, ecg, bp, heart rate, temperature ans a thorough exploration of my wellness and bowel habits. Just another day at the cancer centre. Staff were wonderful as ever.

If any of you were the lady cold capping opposite, with a positive attitude, I’m waving. I do wonder how many of us have crossed paths in our various stages of treatment.

I just wrote a whole post and then lost it!!! Gahhh!!

Sorry that there’s newbies joining @watchadewin@Inthebasementbut I’m really glad you found us, the lovelies on this thread have been a lifeline for me since diagnosis on the 1st Sept this year.

Everyone is right in saying the initial period of waiting for the full picture and treatment plan really is the absolute pits, but I promise once you get a treatment plan your feet will start to touch the floor again.

My coping mechanism was diazepam . I’m pleased to report that I haven’t needed it since starting chemo! Journalling can help too, just getting those scary thoughts out of your head and somewhere else can be very cathartic. I found that my family couldn’t hear what I wanted to vent about and tbh I couldn’t really say what I really felt as I didn’t want to upset them.

Also talking here on this thread, everyone here understands how you’re feeling whereas others who haven’t had a diagnosis really don’t. It’s a lovely place and I don’t think I’d have managed without this lot.

My MRI went ok today, managed to have a nosebleed mid-scan which I didn’t notice (I was facedown and it must have just been a trickle) but when I stood up, the staff told me “you seem to have had a nosebleed”. I went to the loo, looked in the mirror and looked like Freddy Kruger!!! It was in my EYEBROWS. How?!

Hope everyone is doing as well as can be and side effects are being kind.

@ForestFlowerFairy , how are you feeling? I’m glad the Dogs Trust were so helpful and I’m also glad your DH drove you. How is the eating going?

@Ventress
How are the fingers today? Is it just your hands or are you having any issues with your toes too?
I’ve had lots of cake this evening to relieve the trauma of the nosebleed. Any excuse eh?

They’ve told me about a week for results so I’ll take that as a win.

@Nonamelass
When do you get your biopsy results? I’ve got everything crossed that your new strategy works and this isn’t your third go round the wheel of fuckery. TTR made me chuckle! They should put this on our official medical notes from now on. I’m defo adopting this.

@FcukBreastCancer
Did you get your DDs results yet? I hope all is well and she’s feeling better. When do you start radio? Are you all healed yet?

@cantbelieveIamhere
How are you doing? How are your side effects? What day is chemo for you again? (Sorry my brain fog is real!).

Waving to everyone and anyone I have missed, I’m sweating on the couch with some kind of virus. This weekend has been shit with it, DH is having to lift baby fatfat for me because I’ve not got the strength. Not great going into week 1 of EC. I’m hoping my bloods come back ok and chemo isn’t deferred.

I got some Manuka honey and holy crap did it make me heave . I don’t like honey at the best of times but that was like the honiest of honey :D

p.s @ForestFlowerFairy you should let us all have the name of your friends podcast so it can put us all to sleep

Thank you for your lovely welcomes! It's nice-and-not-nice to be here!

Yes, podcasts work for the insomnia sometimes, but journalling sounds like a good idea. I'll try that.

@cannaecookrisottoi will share the link of my friends podcast, not because I want to send you all to sleep but because I'd love for his podcast to be a success, skip the first, go to the second they relaxed more into it: https://open.spotify.com/show/1TUQNdWP39G6A5vXLC6ode?si=3yUFOO0kR_mGNtid_hnKpw

My eating is going well, the salt taste has gone which is far quicker than anticipated, most information said 8-12 weeks so I'm delighted it's gone within a couple of weeks. Flavours are muted at the moment but j can tell the difference, weirdly I'm loving vegetables especially mushrooms and peppers.
We're doing a Christmas BBQ cooking course this Saturday and I think I'll be able to enjoy most of it. I can't eat much still as it hurts and my mouth is so dry I drink more than I eat so I am topping up with meal replacement shakes still. Sadly thr dry mouth is likely to be permanent as it's unlikely my salivare glands will recover from the radiotherapy nuking so I just have to get used to drinking lots when I eat.

Sorry to hear about the virus - seems there's some really nasty bugs all around, my daughter is back from uni with the most horrific cough, she's had 2 days of high temp and sweating and seems to be feeling a bit better now, though I enjoyed 'mumming' over her and making homemade chicken soup

I do hope everyone here manages to avoid the nasty bugs floating around

@cannaecookrisotto you are so good st keeping track of everyone. Do you use two screens? Maybe i shall try that.
I forgot to ring gp yesterday at 8am so by the time I remembered at 8.30 I would have zero chance. I'm hoping her consultant will tell me something today (appointment for her allergies).

I suddenly remembered my friday appointment in the night and thought, what if they didnt get a clear margin again. I didnt give it much thought the first time, just assumed they would! A third surgery would be very annoying.

A nosebleed during the
MRI? Oh dear @cannaecookrisottoyou have to go that one step further don’t you? 😂 I’m sorry to laugh but if we don’t we just collapse, right?! A week until results, I will keep my fingers crossed.

10,000 years of companionship and learning the fastest way to our inner squishiest selves @dancingwhilstfacingthemusic. It’s really quite amazing. I’m glad the first day at hospital is over with.

I didn’t like to ask for the name of your friends podcast @ForestFlowerFairybut I could do with help sleeping too. I woke at 2am yesterday and couldn’t get back to sleep. I have a big meeting today as well so I really could have done with some sleep. I think the letrozole is screwing with my inner temperature gauge and the Zoledronic acid is causing the aches and pains in my bones. Particularly bad in the long bones of my legs. My nails are starting to look lined too which I assume is calcium. I am taking calcium and vitamin D supplements so I hope that is helping.

How are you @FcukBreastCancerand how is your daughter?

How is the eating pain now @ForestFlowerFairy? It really sounds as though you have made tremendous progress compared to where you were when you had just finished radiotherapy.

I hope you managed to get some sleep @watchadewin. I also echo @ForestFlowerFairy that the chemo and McMillan nurses are fantastic to talk to.

i though Manuka honey was to be used on wounds? A few years back my dad tried to deglove his ankle and part of his wound recovery was manuka honey. Costs a small fortune but extremely good.

i hope chemo can go ahead today @cannaecookrisotto🤞

I can't keep up with this thread but I do keep an eye on it and am wishing you all well.

@Inthebasement It's true that the waiting for a diagnosis is agonising. It took almost five weeks for me and I was getting worse by the day, which was really scary.

There are apparently over 60 types of lymphoma; mine is diffuse large B cell lymphoma, one of the more common ones. Very aggressive but often curable. I was stage four when diagnosed but that's not as scary with lymphoma as for other cancers because the lymphatic system goes everywhere in the body so it spreads rapidly, but the chemo targets all of it.

My first chemo was at the end of August and my last one is this Friday. I'll find out in January how well it has worked and whether I will need radiotherapy.

If you do turn out to have lymphoma, feel free to ask me anything and I will help if I can. Different lymphomas have different treatments, so my experience may or may not be relevant.

Hi all, thanks for the welcome. Been working all weekend and catching up with friends whilst I had a couple of days of really good energy levels (I manage about two of those a week, its been like that for months, I can only imagine the tiredness if/when treatment starts, you all have my utmost admiration for functioning when going through it. It gives me hope)

Forestflowerfairy so sorry to hear about your dog. Its heartbreaking to have to rehome, esp when you really don’t want to, but you did what was best for the dog and that takes real love. He’s lucky hehad his time with someone who can do that.

Ventress, thanks for the kid words. I hope your energy levels are better this week. Do you find theres a pattern with that and treatment? Just wondering if people find it possible to ‘plan’ days you might have the wherewithall to get things done?

Sorry to hear about your dog too Dancing. They really are such a bit part of our lives and theres no denying the space they leave empty when they go.

Blimey Cannaecookrisotto I think an MRI must be freaky enough on its own, let alone having a nosebleed during one. Hope the virus is easing up for you.

Hi Ohjoyohbliss. Is it bad to say that its nice to have someone on here with the same cancer? Obviusly hate that you have it…but you know what I mean. Been trying NOT to google too much because there are so many and they vary so much in prognosis after 5 years. Just trying to enjoy my last few days of not officially being diagnosed, if that makes sense. I can’t control what I’ll be told on Friday…so I’m aiming not to let it ruin every day until then.
Can I ask how often you have Chemo, and also how symtomatic you were before you found out? My only real issues are extreme fatigue, a feeling like I’m constantly on the verge of getting a virus, and a few digestive issues. I honestly thought it was just perimenopause/being a woman with kids and a job and doing too much.
How long do you have to wait after your last Chemo to know how well its worked? I’ll have my fingers crossed for you!

Hi watchadwin, sorry you're here, but glad for you that you are as this thread has REALLY helped me already. Insomnia is the worst…I plan out all the things I’d want to have if there was a zombie apocolype. Literally, what it would need for me and my family to survive 6 months in a bunker. I realise that makes me sound like a nutcase, but it really works…I usually drop off around the ‘how many bags of pasta? Stage.

I did have a question, but Ive forgotten what it was. Sorry if I’ve missed anyone out. I’m bad at scrolling through. And…You lot are lovely.

Ive remembered my question! How did/do you find it if you are trying to carry on working and having chemo/radiation? My job is very physical. On my feet between 8 and 12 hours a day at least 3 days a week. I have a couple of hours in the office on other days which I think will be fine….but My DH and I run our own business and I’m dreading how this might impact my contribution to that.

Sorry for the multiple posts, but actually wanted to ask…was there anything you DIDN’T ask your consultant in your diagnosis/treatment plan meeting that you wish you had. They’ve told me it will be a 2 hour appt and I want to make sure ive covered all i’ll need to know.

Hi @Inthebasement thanks for kind words. I had 16 rounds of chemo, paclitaxel followed by EC. I was absolutely floored by them but mostly by the EC as it built up following my 12 paclitaxel. It seemed to be cumulative. I tried to get out and about every day but on my worst EC days, I could only go 50 yards with sticks. I must be one of the people it hits hard, as a friend of mine had the same regime and didn't have any side effects at all! I wasn't bedbound every day, just a certain couple of the days of the cycle and was back to myself the week later on a 2-week EC cycle (which included a trip to Paris for DS's 25th birthday, requiring lots of walking").

So, I think it might depend on you/ the treatment.

@cannaecookrisotto hope you soon recover - honestly i dont even know how you are coping with children to look after.
good that mri is done and not long to wait for results.

side effects are slightly less shit and i will vote for akeynseo as the 5 day anti sickness drug - definitely worrth having
but i feel like a mole i just get up and shuffle about a bit and take some meds, rest on sofa, fall asleep during programmes and back to bed. its not life at the moment so am hoping once these injections are finished i will start to improve and be able to enjoy my christmas dinner at least

hope you got your treatment