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

Thank you @cannaecookrisotto
i am not alone, this week, but next week I will be.
I have seen the GP, and they’ve given me some more pills for nerve pain and the panic.
I know everything could be so very much worse, and a good friend has just had some terrible news about their surgery, so should be feeling lucky relatively that mine was caught so early. But until my next appointment I can’t relax, or sleep. And I’ve had to go back to work, albeit online only, as I have no choice since I am self employed.

Oh bless you @OhNoItsAdeno . Id call out of hours for some diazapam as suggested. It could be a help.

@OhNoItsAdeno if you’re alone next week and want to chat just DM me or tag me here. I find it hard to vent to family and friends because I feel like I’m hurting them. I know for BC there’s a buddy support service (“Someone Like Me”) where they match you up with a volunteer of similar circumstances who has come out of the other side. They offer an impartial ear and practical advice and support. It might be worth checking if there’s a similar service for yours?

You don’t need to feel lucky, or grateful. A cancer diagnosis is a cancer diagnosis and it’s hard no matter what the stage. It’s a shit sandwich whichever way we look at it but like you say, concentrate on that you’ve been caught early, it’s localised and they’re going to look after you. You’ve got this!!

I feel grateful to have caught at stage 3 and not stage 4. Fucker has crept to the lymph nodes but I thank my lucky stars every day that the good old lymph’s did their job and netted it. Now they’re treating me accordingly.

It’s just shit. It really is. My mum called me today at 8:30am in pieces, still in her work uniform from last night, a bottle of rum later and just not in a good place. She’s doing so much for me, can’t do any more than she is doing but she can’t accept she has no control. I told her to get her ass in the shower and get to bed. Pour the bloody rum down the sink and sort her shit out. I could have done with her here today to help with the kids, the Filgrastim injections are giving me bloody bone aches but if they’re producing bone marrow as instructed then they can ache on!!!

Sorry to hear things are so rough @OhNoItsAdeno I get it, it doesn't matter how much others may have it worse this is happening to you and it's shit.
I second everything @cannaecookrisotto said, if you need a talk we're here, you can say whatever you need without judgement

I'm sitting watching strictly with some wine. Bloody deserve it. I had the dentist yesterday following a panic attack in july at the hygienist. Anyway, got a massive dose of diazepam for it. Dentist was very lovely and I got a long nap after. I've been poked and prodded for cancer, but getting the dentist done was a biggie.

Latest from me is that Her2 still with genetics. CT should be back for MDT next Thursday. And biopsy of other boob due then also. Consultant still telling fibs to be honest.

@FcukBreastCancer I’m a freak who enjoyed the dentist but that was back before this shit show and never so much as had a filling or cough. Will be different next time I think, I’ve had enough of being faffed with already and only at the start!!

Diazepam do help, they gave me 2mg and one was enough to just help level me out more or less. Reminds me, I need some more. I dare the GP to refuse. I’ll ask the GP who sent me home in May with this twatting lump and told me to hot compress. She rang me after they must have received notes from the hospital and said she “nearly fell off her chair when she heard”. You and me both love.

Got everything crossed for CT news quickly next week for you. Nowt worse than this waiting bollocks.

My update:
chemo 1 Weds 15th. Felt fine Thurs and Friday, think the steroids had a lot to do with it. Filgrastim given me some bone aches but Loratadine has helped a lot (some ladies on a TNBC group recommended and Onc said try it, won’t do any harm, could be placebo but it’s helping 😂).

Today I have mild fatigue and twat lump is hurting. I’m paranoid it’s now attaching to my chest wall or something. Oncologist said it’s still operable at this point and any sign chemo isn’t shrinking they will revert to plan B of surgery first. With TNBC over a certain size they always do chemo first to get the immunotherapy in.

I just keep worrying that I’m going to lose that option. I just hope hope hope that it responds to chemo 🤞

@OhNoItsAdeno how are you doing this evening?

@cannaecookrisotto pain in the twat lump could be a good thing! My oncologist asked me after cycle 2 of chemo if I was feeling anything in the offending boob. I had thought i was imagining the pain and tingling but she assured me this was a good sign that the treatment is actually doing what it was supposed to do. Makes sense that you might be feeling something if the cells are being killed off by the chemo, no?

@Poledra that makes me feel less horrified at this throb it’s giving off. I’ll try and reframe it in my mind as the little chemo nuclear bombs doing their business.

Thanks for posting that, it’s bloody reassuring and I was too scared to google 👀!

I like the idea that the discomfort and tingling is the chemo doing something
My throat is pretty sore this weekend which I assume is from the radiotherapy however, I'm ignoring it all because I GOT THE CHAIR!!!!
Insurance company called to confirm that they were going to pay, so, now I'm not worrying about my salary I have the comfy chair and the very first thing I've done is make a cup of tea and message you all to inform you I am in the chair! All reckon all I need is a soft blanket and I'd pass right out

I hope you're being kind to yourselves this weekend and finding ways to distract you from this shitshow

@ForestFlowerFairy🛋️🪑❤️

@ForestFlowerFairyyayyy for the chair!!!!! Happy chair day 😁. Bet that was a magnificent cup of tea from the comfy chair and yes to that blanket and snooze!!!

@ForestFlowerFairy I'm glad you've got a new chair - now you can sit back with and watch Match of the Day in comfort!

Last week I had - Bloods taken - Ochlology conversation - Chemotherapy - pump fitted - pump removed. One good though - I didn't have to have any subsequent Filgrastim injections which cheered me up 😁

Starting to feel very tired now.

Hey @DanFmDorking!
Ive had those pesky Filgrastim buggers this week for 3 days after chemo. Do you get any bone pain with them? Some of the ladies in my support group things swears by Loratadine to manage the bone pain. I checked with Onc and she said try it, won’t do any harm and I shit you not, it was less painy on the days I’ve used Loratadine 🤷🏼‍♀️. Could be placebo but I’ll take it as a win!!!

Sounds like you’ve had a busy week, what’s on the cards for next week?

I’m now imagining @ForestFlowerFairy in her magnificent chair, cup of tea, fluffy blanket, snuggled in. I want comfy chair now!!! I’m in bed with the kids where I can ache in peace.

I can confirm the chair is magnificent, the cup of tea delightful and the blanket moment slightly disturbed by my Mum turning up, however as she's driving me every day to the hospital for the next week I won't be complaining!
The hospital is just over an hour's drive and no family live near by so I've been very spoilt and have a rota of family coming to stay a week at a time to help.
For now, there is a chonky cat curled up in a tight ball on my chair and I'm tucked up in bed...with a tiny cat who takes up the most room, why is it the smallest creatures take up the most room?!
Enjoy the cuddles in bed @cannaecookrisotto
May the following week deliver nothing more than tiredness

I have two cats too, one large one small and agree, it’s the smaller one that thinks it owns the bed. Some nights, there’s me and DH, the two kids and two cats.

Little cat will sleep either with me or with DD8 (her best mate). So when DD8 comes trailing in here with her pillow, the smaller fluff usually isn’t far behind.

Your family sound fab Forest, I’m lucky in that sense too. My mum can drive but hates driving places she doesn’t know so she comes along but I drive. It’s just nice having company.

I’m off for an US on my ovary in the morning. There’s a “vein or something” that showed up on CT. Oncologist looked me right in the eyeballs and said she wasn’t concerned, it’s just following everything through and that there’s usually something on CTs that pop up for a closer look. Bloomin easy for her to say, they told me my giant tumour was blocked milk for 4 months so “not concerned” brings me no comfort anymore!!

Scan of ovaries and pelvis was clear. By the grace of god it was the radio consultant actually doing it so he gave me the results as he did it, no waiting a week. Said it is indeed an enlarged vein and nothing to be concerned about. Mentioned a benign fibroid but told me to forget about it.

I was absolutely ok until the postman just dropped the biggest pile of scariest letters through the door. It’s absolutely floored me, it’s fucking terrifying reading. Seeing it in black and white written down talking about how it’s concerning for invasion, aggressive, 90mm, close to skin. Close monitoring etc for response to chemo.

It’s absolutely just wiped the floor with me. I can’t believe it’s me I was reading about. It’s took my breath away tbh. I can’t get a grip, I’m glad I’m home alone, I can’t stop crying.

Sorry you had such a stark letter. It's ok to cry. Sending you big MN hugs.

Have you got a Maggies near you? I dropped in to my local one last week and they always have an open ear. Although it your anything like me, you might prefer to not talk about it.

I'm so pleased you got the results straight away, I can't imagine getting that letter AND waiting for results - it's so hard to see the positives when we get these side blows, but the scan was good
Grab the kids for a big hug, curl up and rest this evening x

Day 4 of radiotherapy done, 26 to go. Roof of my mouth feels a little like I've burnt it eating something hot but I'm hanging in there

Thanks ladies for the hugs. I spoke to the BCN at the Christie’s and they’ve said they will put a note on not to send me any more letters and if there’s anything important she will ring me. So I don’t have to assassinate the postman which is a plus! BCN said chuck the letter in the bin, it’s nothing we don’t already know and we’re aiming to blast it.

There’s a Maggies right next door to the Christie’s so I might pop in. But I’m a bit like you, I hate verbalising it, it makes it so real. Probs why I reacted the way I did to seeing it written down, I was forced to confront it. Maybe that’s what I need.

@ForestFlowerFairydo you have radio daily? Is there anything they can give you for the burnt mouth feeling?

I think stopping the letters is an excellent idea but feel free to yell at the postman too - whatever helps!

It's a pretty intensive 6 weeks course with radiotherapy Monday -Friday and chemo once a week on the Wednesday, so whilst it's harsh and intense I keep telling myself it's just 6 weeks.
Then for 3 weeks after they stop, they anticipate the symptoms get worse before I start turning the corner BUT it's a very short time in reality.
I'm lucky the tumor has already been removed so unlike many of you, for me, this is the final step of treatment.
The throat burning and closing is 100% anticipated - which is why I also have a feeding tube fitted. only 10% of people get through this and can still eat/drink so I will mention it's starting to hurt tomorrow and see if there's anything they can offer - right now I'm self medicating with ice lollies and Cadbury pots of joy!

@cannaecookrisotto Thank you - I'm sorry things are tough for you.
Filgrastim - any bone pain with them? Nope, - not too sure why - I had a couple of operations earlier in the year which resulted in parts of my right hip being numb - so I use that spot for the injections which is great because I don't feel anything ('cause I'm a wimp).

The great 'steam train of tiredness' is starting - I'll be struggling a bit - but not as much as you - I should be Ok for the Macmillan Coffee Morning on Friday 26th September and I want to go to Screwfix Live at Farnborough 'cause there's free stuff available

@ForestFlowerFairy a pretty intensive 6 weeks course with radiotherapy Monday -Friday and chemo once a week on the Wednesday
Wow - that's very hard for you - I hope things go smoothly.

(I do realise I'm luckier that you lot though)

@ForestFlowerFairy it does sound intensive indeed! How’s the mouth today?

@DanFmDorking how’s it aboard the steam train of tiredness?

Just want to post a tip for any ladies who are using the ice gloves and socks during chemo to help prevent neuropathy. I really struggled to tolerate it using normal socks and gloves with the fingers and toes cut out.

Sounds absolutely nuts but I bought some Neoprene scuba gloves and socks off Amazon (less than £20 for both) and cut the fingers and toes off, so can only feel the cold where it’s needed but it keeps the rest of my hands and foot dry and warm. Makes such a difference!

Second chemo today.
Taxol and Carbo.
All good, cold capped, did ice mitts and socks from hell, feel ok tonight. 8 year old came home complaining of an itchy head (we managed 4 years since the last nit episode so I can’t complain really) emergency de-lousing commenced.

I was cackling imagining the nits jumping on my head and getting a whiff of my hair follicles and thinking “fuck that” and keeling over 😂.

I’m very tentatively optimistic that I’ve had some shrinkage of twat lump. Not a lot, but I’ve got some new stretch marks on the boob and it feels more wobbly and less taut. Somethings happening anyway but I’m not sharing this with family and friends just yet in case I’m imagining it and don’t want to give them false hope. But feel safe sharing here.

@FcukBreastCancer I hope your treatment went well today, @ForestFlowerFairy I hope the new chair is everything you dreamed and more- and now doesn’t just belong to big cat :)

I know I keep prattling on in here but I want to keep the thread going for any newcomers that might find their way in. I’ve had a look back through some of the previous threads and can see how much support they’ve brought us. It’s quiet at the moment but if anybody needs us, we’re here.