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Cancer Support Thread 94 - Sweetness and light - the two noblest of things.

958 replies

LemonDrizzle10 · 20/04/2024 23:44

@tilllly and Daisy.

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18
Enigma52 · 30/05/2024 10:19

Drop in centre sounds like a good shout. You cant continue in pain and with such swelling. Do you have
a " hotline" to call or is it a&E if things aren't right?

catmomof3 · 30/05/2024 13:37

Saw on my oncologist yesterday and we all had a good laugh about how I still had hair, well karma has struck today because it's starting to flake off (had a buzz cut after 1st infusion) and my whole head feels itchy and tingly lol. Only 3 more chemo's of taxol/carbo till they put me on cisplatin so it should start to slowly grow back.

Also got some sleeping tablets prescribed and last night I slept from 9pm all the way till 7am without waking up once which was amazing.

EachandEveryone · 30/05/2024 13:59

I have two hour wait in the walk in centre. I saw the cancer nurses at my dressing change and they’ve told me to come here

Enigma52 · 30/05/2024 14:06

Fingers crossed you get seen soon
@EachandEveryone

KentishMama · 30/05/2024 14:54

Any news, @EachandEveryone? Sending you the best possible waiting room vibes.

EachandEveryone · 30/05/2024 16:22

I’m in a and e I’ve never been in such an intimidating place

catmomof3 · 30/05/2024 18:12

Hope you're ok @EachandEveryone

Penguinsa · 30/05/2024 18:30

Hope you get seen quickly Each Let them know you are doing chemo if you haven't already, I think ours had a priority system though never went to A&E. Could also try the chemo line if your hospital has a cancer chemo emergency section and see if could go there instead, its generally a lot quicker and nicer.

EachandEveryone · 30/05/2024 18:35

I’m in a side room and bloods have been take. They said at least another two hours. The charging bank isn’t working which is annoying.

Enigma52 · 30/05/2024 22:31

How's it going @EachandEveryone ?

EachandEveryone · 30/05/2024 22:40

Still on potassium drip they can’t decide whether to keep me in and get me a Doppler tomorrow or to send me home and get me one as an outpatient.

i despair really on what planet isn’t a Doppler available in a busy a and e overnight

EachandEveryone · 31/05/2024 01:01

Home at last

Penguinsa · 31/05/2024 10:40

Glad you are home Each Hope the drip helped and they can find a solution and quickly.

Nomorebear · 31/05/2024 11:11

I hope @EachandEveryone you are doing ok this morning.
I’m also going to gatecrash this discussion again as I’m absolutely reeling about my results yesterday. I’d been dealing with everything quite well up until now.
Turns out my lobular tumour was just over 7cm and the cancer was in 2 out of the 4 lymph nodes they took during surgery. So now I need 6 courses of chemo (3 weekly cycles) plus radiotherapy for 3 weeks after the chemo. Then chemo drugs for 2 years plus hormone blockers for 5. Need to wait now to see the oncologist but I’m properly freaking out. Worried about chemo, worried about it having spread, worried about it coming back.

Whatevershallidowithmylife · 31/05/2024 11:44

@EachandEveryone I think we’re in the same boat. My stocking helped but it’s worse at night. I’ve found the inflatable cushion helps a little but not massively ☹️. So you have a hospice near you? Sometimes they have a dedicated lymphoedema clinic?

Cancer Support Thread 94 - Sweetness and light - the two noblest of things.
Whatevershallidowithmylife · 31/05/2024 11:45

Happy Wedding Day to me!!! 💒👰‍♂️💍

Penguinsa · 31/05/2024 11:45

So sorry Nomorebear I also had lobular, 5cm plus 1.7cms plus a third LCIS and in 1 lymph node which had not been picked up on any scan. It is quite common for lobular to be larger in surgery and larger on MRI than other scans. Mine was similar on MRI to real thing but they did warn me it would be likely to be larger again.

I was then given chemo - I said I was terrified and they gave me a choice of 6 cycles or 4 cycles and a choice of 4 different regimes. The oncologist said it was controversial but she thought 4 cycles would be a very similar success rate to 6 and bearing in mind the side effects she thought it OK and better for me. You don't normally get a choice of chemo but I had done a lot of research and was super anxious and also had 2 children, one SN and in crisis and one about to do GCSEs during chemo and they took pity on me. Its like choosing which poison you want but I went for weekly Pax as that has less risk to heart long term and also weekly Pax she said would be meh-meh-meh in how you feel whereas 3 week ones she said followed the really awful week 1, meh, OK week 3 pattern and I was worried about being admitted to hospital. It was during covid times and hospital was rammed. They also said though if did the 3 week one and you take your temp every day and alert them asap if it goes up or if you have certain symptoms even at 2am then its rare to get serious things. They said the people they generally admit are people who get symptoms and don't call the chemo line until they are at crisis point. If you are worried about sickness they have lots of different tablets, I had a sickness phobia but infact I ended up not taking all their ondasetron as I didn't have sickness much and all 6 a week gave me indigestion and pain. But you can adjust the extra meds to suit you though check with them first. If you are worried about hair loss you maybe able to cold cap. I wasn't allowed on weekly Pax, did my own version of frozen peas on my head under a chemo hat which actually worked but only saved 40% so in the longer run I've had to cut it off. But I never went bald.

The 2 year treatment is that abem... I was offered that but actually never took it. It was just too much for me, at that stage my son was in hospital and I needed to be well enough to visit him on a 3 hour trip. I did have radio which was actually super easy. I had to have a second op to remove all lymph nodes but maybe they are doing that via radio? There was no further cancer found.

I would say just try and take it one day at a time right now and one treatment at a time, chemo is the worst by a mile but think of it as 1 chemo not 6 and people vary how they find it from basically OK to horrific. I was in the horrific but even then it does end it was 4 months of my life then over. And every day in that isn't awful, its more like having flu for 4 months. Mentally its incredibly hard and the steroids had a terrible effect on me but a lot of people are fine on them and any problems with any treatment call the 24/7 line and things can be adjusted. Hormone tablets I find not that bad. And life will get back after to a new normal, like this weekend my diary is just do gardening then go to a gardens and have afternoon tea with DH, next week DD has 3 A level exams, I do have checks next week for stage 4 and a new cancer but these are annual. Rest of the time I don't think about it much. Holidays restart been to Maldives and Mauritius since, renovated house. You will come through this, its just going to be a tough rollercoaster to get there. I was the most scared person and I got through it and I am now much tougher for that and found a lot of lovely people on the way.

Penguinsa · 31/05/2024 11:46

Happy wedding day What How exciting.

MothralovesGojira · 31/05/2024 12:00

@Whatevershallidowithmylife
Congratulations Mrs Whatever & Mr Whatever!
I hope that you have a beautiful day
Big hugs all round 💐💘🎉FlowersWineWine🍰

thesandwich · 31/05/2024 12:22

Congratulations mr and mrs@Whatevershallidowithmylife hope you have a beautiful day.
@EachandEveryone hope today is better for you.
@Nomorebear sorry about your news- but hang on in there. @Penguinsa has given a great description I would recognise from my experience- it’s shit, but it is doable and honestly the waiting is the hardest.
Loads of wisdom and experience here- ask anything. Don’t google, Macmillan or breast cancer now only sites recommended by medics. Seek gp support if you are struggling mentally- and it wont be long before you’re offering advice here. Honest.

TwigTheWonderKid · 31/05/2024 12:44

@Whatevershallidowithmylife I hope you have a truly happy day! 💐

TopOfTheCliff · 31/05/2024 16:58

@Whatevershallidowithmylife Congratulations! Hope the day is wonderful xx

@Nomorebear you can do this! None of us wanted to do chemo, or have cancer at all, but we took it one day at a time and eventually it is behind you. (I had the fun of doing the whole Cancer Triathlon twice through for two different breast cancers).
Don’t look ahead, just focus on what you need to do today. It Will All Be Fine!

tothelefttotheleft · 31/05/2024 17:14

@Penguinsa

I'm doing pax and carbo and I am cold capping? Why weren't you allowed to cold cap? I feel like I've asked you this before sorry if I have. I'm in a fog.

tothelefttotheleft · 31/05/2024 17:15

Whatevershallidowithmylife · 31/05/2024 11:45

Happy Wedding Day to me!!! 💒👰‍♂️💍

Have a wonderful day!!

I'd love to see pictures x

Fantasea · 31/05/2024 17:17

@Whatevershallidowithmylife congratulations to you both, wishing you a beautiful day Xxx

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