Cancer Support Thread 85 - Hoping for a positive 2023

[AGreatUsername]

Starting a new thread as the old one is almost full.

Welcome one and all, this is a thread for those with cancer and those who are awaiting tests for cancer. We offer support, a place to rant/vent/cry and ask questions without judgement. As always maybe we can do a quick who’s who at the start of this thread for newbies.

Heres hoping for a positive 2023 for us all.

echo what @Mycatispretty says; the treatment plan made a huge difference for me. What a rubbish time for a diagnosis though. Hope your day went as well as it could. I’m already snuggled up with 3 yr old for the night.

Shit shit shit! My temperature has gone up to 38.3C so I am negotiating with the chemo unit on Paxlovid versus blood tests. I really don’t want to visit A and E tonight. My DH is ready to kill our “friend” who visited us with a cough on Sunday and tested C19 positive on Tuesday. I feel okay apart from shivering and aching. How much more adversity do I have to put up with? Sodding Covid! Excuse my language I am fed up. But not too unwell luckily.
Don’t worry folks the rest of you will be fine. It’s just me in the Low Odds Bin.

Top x

Hope it improves soon Top. I had Covid in September after chemo ending in July and had anti virals and they made me nauseous but better by end and mild symptoms on. First time had Covid was very I’ll so that was much better. Worth trying anti virals, got to be better than A&E. Got mine via chemo line then couriered within few hours.

Hope you are doing OK @Mowly77 not heard from you in a while.

Hi all, thanks to those who supported me on the last thread when I first found out and hoping for a better 2023 for us all.

Thought I had mastitis end of August this year, turned out to be grade 2 stage 2 breast cancer. ER/PR + and HER2 negative. Had a lumpectomy and sentinel node biopsy, cancer found in 2 nodes so had the rest removed and nothing was found in any of the others. Currently panicking about a lung nodule that they keep telling me is most likely nothing. Final EC chemo is Jan 4, then it’s 4 x paclitaxel, radiotherapy and tamoxifen for the foreseeable. I’m 37, married with an 8 month old DD. Having a very hard day today, feeling disfigured and ugly and quite a bit of my hair came out today for the first time which took me by surprise and then I feel guilty for even letting it upset me. Some days I find I can just get on with it but today I just want to dig a hole and bury myself in it.

@TopOfTheCliff hope you can get the antivirals quickly without a and e. So shit. Hope you’re feeling better soon.
sending good wishes to all.

@TopOfTheCliff i got anti virals at home and so di my ex husband who is clinically vulnerable. I was given tablets and he had IV treatment administered at home. Thinking of you

@lostintranslation78 you’re very welcome. Well I met the lovely couple who adopted me for Christmas meal in Tenerife. I had a lovely time but now I’m really tired and have retired to bed. I raise a glass to all of you on this thread and thank you all for the support you give.
@TopOfTheCliff let us know how you get on. I’m thinking of you. The anti virals worked a treat for me. Hoping you feel a bit better soon

Hi there I hope you had a nice enough day today. I’m also watching hand made chocolates in my mothers spare bed. I’m not tired at all but I can’t watch watch telly with them all night it only makes me want to pop out for a cigarette and she would kill me if she found out I was smoking. I’m 55. I have a lump in my groin. Heading towards my vulva now. Initially told it was secondary and I have gone through every test known to mankind to find this bloody primary. It’s been about 7 weeks but feels longer. It’s squamous cell cancer p16 from the biopsy. In theory this should be easy to treat that’s what’s so upsetting about it all. They can’t decide on a plan. Now one of the team has decided perhaps it should just be taken out. They are sending me to plastics to have my skin checked over and I’m back on the 4th January. I keep reading about COUP and it terrifies me literally I can’t see a good out come for me if this is what I have. Where the hell can it have come from? I’m not sleeping the Zopiclone isn’t touching the sides. If I was in London in my place I’d be having a wee tipple but I can’t here I have a very judgemental mother 😂

Just diagnosed last week with a grade 3 her2 positive large breast tumour. In living hell this Christmas as I wait for a scan to find out if it’s spread. My anxiety is through the roof and feel like a dead woman walking as I’ve just not slept and I feel like I can feel it spreading across my chest. It’s been really difficult with two young children but husband is being amazing. The waiting game is awful. Can’t wait for everything to reopen on Weds. I just want to start treatment.
I’ve been reading about cold caps…are they standard or difficult ti get and vary from trust to trust?
@TopOfTheCliff I hope you are managing and feeling slightly better.

Just been diagnosed with stage two grade one lining of the womb cancer. Have CT scan on 6th January to see of it's spread. I feel like that's it life is over. Cancer always comes back nobody is ever totally free from it when it's this stage. I had a full abdominal hysterectomy almost three weeks ago and cancer was found afterwards. I begged that surgeon cunt for a hysterectomy four years ago as I'd been bleeding everyday with numerous hospital admissions. It's his fault and I'm angry at him.

The Cancer is caused by too much estrogen and I have took it upon myself to stop the estrogen HRT which means il go straight into the menopause, fucking Great

The oncologist Gynaecologist said I didn't need to necessarily stop the HRT. DOH
IM DEAD I'VE BEEN MURDERED

@Whattodotomorrow mine was grade 2, upped to grade 3 after the mastectomy biopsy. It hadnt spread to my lymph nodes though. The lymph nodes are doing their job by catching it if it has spread to yours. They didn’t offer me chemo prior surgery but I’m getting it Jan as also triple +++. I believe they offer you a cold cap but it needs to be fitted properly, I’m going to try the gloves and socks too. @Vaccine001 that’s awful. No wonder you are upset and angry. What was the gynae’s reasoning for saying you didn’t have to come off HRT ?

I asked her if I should come off HRT estrogen only patch and she said not necessarily so and you'll go straight into menopause. I made the decision myself.

I have five weeks of radiotherapy and radiotherapy inside the vagina. I'm going to complain about my treatment.

@lostintranslation78 welcome. It’s perfectly normal to swing between zen and panic, it’s such a traumatic time, be kind to yourself and if you need a little cry have one. Then pick yourself up and tell yourself you’re doing all you can here and so are your medical team.

@TopOfTheCliff oh noooo! How are you this morning? Your selfish bloody friend 😡

@EachandEveryone They do seem to be dilly dallying about with your case! On the positive side it being easy to treat is great, hopefully they’ll decide a plan after Christmas and get moving for you!

Hello everyone - hope you're having the best Christmas for you.
Mammogram recall in August and diagnosed with BC - small tumour (less than a cm.), hormone positive and HER negative.

Lumpectomy on our 37th Wedding Anniversary (cheap date!) in September, and completed 5 days of radiotherapy three weeks ago. Letrazole for 5 years - so far completely manageable.

However....I developed a large hematoma after surgery, which seems to have partially liquidified after the radiotherapy and began seeping through the scar. Wound has opened up and left quite a large 'hole' which is having to be cleaned and re-dressed daily. Thank God for DH and DD - although I am really squeamish about them taking on this responsibility. We're supposed to be going to a Wedding in South America in January - looking unlikely as time goes by.

Hopefully next Christmas will be a better one for us all!

Has anyone changed their diet since diagnosis? Does it help to exclude as much sugar as possible for example? Any tips from anyone please? I want to do all I can

ajandjjmum did radiotherapy give you any side effects? Did you change your diet? I'm glad you seem positive x

Morning all. I had a shocking night with a high temperature but the lovely ward sister on the chemo unit said I could wait at home for paxlovid which is as I write in a taxi speeding towards me! I’m feeling better this morning. Selfish friend spent Christmas with family who are now en route to Bali for a holiday with two coughing kids. I hope they get stuck in a covid prison for a week!

@Vaccine001 don't get sucked in by all the Sugar Causes Cancer crap. Just eat healthily and exercise when you can. It’s not based on science or your oncologist would recommend it. Sorry you have had such a difficult time. Even teetotal vegans get cancer. It’s just random cell mutations. You can drive yourself bonkers trying to find a reason for it. Trust me I know! I’ve had two different breast cancers in two years with no genetic cause.

@EachandEveryone it can’t be much longer and they will come up with a plan for you. I feel for you being non-standard it is scary.

@ajandjjmum sending healing thoughts to you too.

When I had Covid in early August my only option was to haul my butt down to a hospital south of me (taking two trains and over an hour one way whilst actively ill - I dont drive) to get an infusion over three days because my current treatment meant I wasn't eligible for the pills due to drug interactions. I politely declined (by the time they called I was already on the mend anyway) but the doctors kept calling to get me to go down there. Like no, just because I live a quarter mile below the river I have to go to the hospital furthest away? That makes no sense, but lots of things never make sense in the NHS.

@Vaccine001 try not to worry about the diet aspect. I did at first as well (Stage IV BC here) but it seemed like extra undue stress and guilt heaped on an already crap situation. I did moderate my drinking to almost zero as I didn't feel like drinking anyway. My cancer was also highly estrogen driven but I was also diagnosed (eventually) with a genetic mutation. I do try to walk and do other light weights exercises daily, though - I think regular exercise is far far more helpful than moderating diet.

Thank you to all that have replied to me so far. I generally feel ok today and hopeful because of your replies and this thread. When I have fleeting negative thoughts I wil write them down on another thread I will start under this topic as it doesn't help to read my shit when we're all at different stages of our journey, it's selfish. @HerbalRefreshment thank you I really needed to hear that x the oncologist said my obesity doesn't help so from Friday I'm going on a healthy diet. Can't exercise yet as still week three of hysterectomy recovery.

I think you're all amazing Thank you for letting me join

I am moderating my diet quite extremely but in truth I ate too much sugar and the wrong fats before. Whilst it is doing me good and my skin is glowing and energy levels are high, I’m under no illusions that it can replace chemo or surgery. I’m also convinced my tumour was stress induced as I had a hellish 3 years prior to its discovery. My brother’s travel insurance expired shortly before he was discovered with locked in syndrome in Phnom Penh and we had to organise & pay for private hospital + flights home for him plus medical team. He died last year. My husband & I had the worst divorce process ever. I moved from one end of the country to the next, two children going through the trauma of separation, bought a house resembling a crack den and poured ££££ into it with a shite builder thrown in the mix. There’s always someone who’s had it worst but I think that was just too much stress for my body to process properly. Oh and like all of us a good old portion of plain old bad luck !!

Are you blaming yourself? @incognitodorrito

Whilst I do think I could have made some better choices, no I don’t blame myself at all. Like I said, a huge portion of it is down to plain old bad luck. I hope you aren’t blaming yourself @Vaccine001, nothing can be achieved by beating yourself up about it. Sending you and all of us here big hugs.

@Whattodotomorrow my first cancer was a grade 3 her2 positive BC with lymph node spread. You will be fine! My lovely oncologist daughter encouraged me to see our treatment as a hand of cards. We have all the scans to turn over more cards and give our team more information to help them play the best hand. It’s highly unlikely you will have distant spread but even if you do the chemotherapy and Trastuzamab and pertuzamab is extremely effective at getting rid of the cancer. It’s a tough course but it is manageable and you will be through it faster than you think. If you have EC or AC your hair will come out around day 14 to day 20. I didn’t bother with a cold cap as it was in the middle of Covid so they weren’t keen but I think it’s easier now. It means a longer stay on the chemo unit so you need to factor that in.
Can you keep busy and distract yourself with planning ahead? It is quite likely you will have chemotherapy before surgery. Get lots of easy meals frozen for when you don’t feel like cooking. Rally your friends to help with school or nursery runs? They will want to help but they won’t know how so bringing food or helping with childcare will make them feel useful. Somebody on here booked a cleaning company to come in and clean the house once a fortnight to keep on top of things as her DH didn’t do cleaning.
I weeded my whole allotment and made gooseberry jam and blackcurrant jelly during the wait for a plan. It seems endless but once things start it whizzes past. Ask if there is anything you want to know. I’ve been round the track twice now so I am sadly expert on chemotherapy.
Thinking of you
Top xx

@incognitodorrito I do find myself blaming myself a bit sometimes but it isn't my fault. It's the PCOS, Fibroids and Andenmyosis. Also being ignored but he Gynaecologist
Thanks for your kind reply
Of you have a cold can radiotherapy go ahead?

Did anyone have any not so nice side effects from radiotherapy?