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Original poster

Cancer Support thread 88 - virtual rage room currently empty, virtual collective afternoon tea - all welcome!

991 replies

LemonDrizzle10 · 27/06/2023 19:44

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orangeleavesinautumn · 14/07/2023 11:10

Scandimandy · 14/07/2023 11:03

Morning all! 👋 got my post surgery results yesterday - bloody thing was 7cm!! Not 2 like they said after the ultrasound! Lymph nodes were clear but because of the size of it I now have to have a. Ct scan to check my entire body - which is quite reassuring actually - then 2 weeks after that I will have an appt with oncology to discuss chemo 😟 they will probs do a genome test to see if chemo would be beneficial depending on ct results and then at the very end of everything I’ll still have to have radiotherapy 😟 not what I was expecting but onwards we go

sending you lots of love xx

orangeleavesinautumn · 14/07/2023 11:12

and to continue my general moan about life- I have no boobs, no hair and am wearing baggy mens cloths and shoes over my chemo tissue damage and scars, and people seem to think I am trying to be a transman

craggyrat · 14/07/2023 11:39

Great news @LemonDrizzle10

TopOfTheCliff · 14/07/2023 12:48

@LemonDrizzle10 that’s fabulous news! Celebrate every gain x

@Scandimandy what a shock! It’s going to take a few weeks to get your genome results so don’t expect anything to happen quickly. I agree about the CT scan it is scary but good to know what’s going on. Knowledge is Power!

@orangeleavesinautumn hello! I share the trans man thing. I am tall and quite strong and with short hair and tomboy dress sense I am often called Sir in shops. That’s why I grow my hair a bit longer although it’s very bog brush style currently.
Be kind to yourself and accept the recovery takes a long time. I was so desperate after chemo finished last time I think I pushed myself too hard and suffered a lot of pain. I’m going to go more gently this time round. If it takes a year to lose the weight and regain fitness so be it.

After my jolly trip to London my feet are blistered and sore from Cape. I am resting up today and have missed a funeral of a very old friend of DH. He has gone though so I’m not too guilty. I’m going to hobble down and get some brunch now. It was worth the pain to get out and about and see DS and his GF.
Sending strength
Top

orangeleavesinautumn · 14/07/2023 12:53

TopOfTheCliff · 14/07/2023 12:48

@LemonDrizzle10 that’s fabulous news! Celebrate every gain x

@Scandimandy what a shock! It’s going to take a few weeks to get your genome results so don’t expect anything to happen quickly. I agree about the CT scan it is scary but good to know what’s going on. Knowledge is Power!

@orangeleavesinautumn hello! I share the trans man thing. I am tall and quite strong and with short hair and tomboy dress sense I am often called Sir in shops. That’s why I grow my hair a bit longer although it’s very bog brush style currently.
Be kind to yourself and accept the recovery takes a long time. I was so desperate after chemo finished last time I think I pushed myself too hard and suffered a lot of pain. I’m going to go more gently this time round. If it takes a year to lose the weight and regain fitness so be it.

After my jolly trip to London my feet are blistered and sore from Cape. I am resting up today and have missed a funeral of a very old friend of DH. He has gone though so I’m not too guilty. I’m going to hobble down and get some brunch now. It was worth the pain to get out and about and see DS and his GF.
Sending strength
Top

Thank you that is really encouraging - I hope your feet get better quickly - I think they need to be put up in front of netflix next to a box of chocolates ....😀

nappybrained · 14/07/2023 12:58

I probably have breast cancer, seen at weekend at one stop 2 week wait clinic. I was told it was a week for histology but no idea how I would be contacted. I've left a message on secretaries answer phone. I think waiting isn't fab, I don't like it!!
I think it's a large tumour and know it will be more whole body scanning then treatment which I think is likely chemo first as it's a big angry effer.
Any soothing words gratefully accepted. Should have asked at time but felt suitably flummoxed.Trying to get my ducks in a row, but maybe that's something I cannot do and just gave to sit tight and trust the hopefully well oiled process.

TopOfTheCliff · 14/07/2023 12:59

It’s the thread virtual Afternoon Tea today. I will be dusting down the best China after my splendid Cream Tea at Harrods yesterday. DH had paid for the simplest option which was tea and scones with cream and jam but they came and interviewed him at length about his prawn allergy and whether he could eat smoked salmon or caviar which got our hopes up for something splendid. Sadly that was just Health and Safety and we just had our scones. It was lovely though and there was a pianist! We rode up and down the Egyptian escalator just for fun too. Worth the sore feet!

orangeleavesinautumn · 14/07/2023 13:04

nappybrained · 14/07/2023 12:58

I probably have breast cancer, seen at weekend at one stop 2 week wait clinic. I was told it was a week for histology but no idea how I would be contacted. I've left a message on secretaries answer phone. I think waiting isn't fab, I don't like it!!
I think it's a large tumour and know it will be more whole body scanning then treatment which I think is likely chemo first as it's a big angry effer.
Any soothing words gratefully accepted. Should have asked at time but felt suitably flummoxed.Trying to get my ducks in a row, but maybe that's something I cannot do and just gave to sit tight and trust the hopefully well oiled process.

Im just coming out the other side, treatment is over ( touch wood) and cancer is gone. The worst part of the whole experience was the waiting to hear what was going on. Once you are over this hurdle, hopefully you will be told all is well, and we never hear from you again! If you do have cancer confirmed, you jump on the treatment treadmill and get on with it, and it isn't fun, but it is manageable, and in my experience nothing is ever quite as bad again as the wait.

So if you can just get through this but everything else is better xxx

what support do you have?

💐💪

FairyWren7 · 14/07/2023 13:42

Bit stressed out here as my surgeon is now saying that the radiotherapy may damage the implants and that it might be better to have the two step surgery with expanders.

I’d got to the point a couple of weeks ago that I was happy with a one step surgery with implants.

My surgery is on Wednesday and I’m finding it all very stressful.

That and there seems to be costa that aren’t covered by my insurance that I’ve only just been told about.

Any experience of this? Please help!

nappybrained · 14/07/2023 13:48

Thank you for reply and well done you!
Have family , DDS in 20s early but also youngers too. And a DH bless who isn't very useful. A handful of good friends who will be about too , so am very lucky really. I have a bit of a ND brain so as you at the waiting. I thought I'd enjoy some wine this week, as likely I'll become a temple over the next few weeks!

TopOfTheCliff · 14/07/2023 14:01

@nappybrained welcome to the thread nobody wants to be on. Waiting is the worst part honestly! Try to keep busy and stay off Google or you will be planning your funeral. Stick to Macmillan or Breast Care Now or ask us if you have questions. I used the Calm app to stay sane during the early bit waiting for biopsy and scan results. Enjoy the wine as chemo puts you right off it! I’ve just about started enjoying a nice gin and tonic again three years on from the first chemo dose.
Do you think being ND will help you cope or make it harder? I am a logic driven scientist and I think that helps as I don’t get very emotional. The BCNs keep wanting me to cry more and emote but I find the Rage Room much more helpful.

SierraSapphire · 14/07/2023 14:15

I am moving DD out of halls today and tomorrow, just on my way up to her. It wasn't planned, she was going to move herself out but she's had a long week on her placement so she's a bit overwhelmed. I was just reflecting I'd just started chemo when I moved her in. It's been an eventful year!

Lisdeflores · 14/07/2023 14:19

@CoachBeardsJane I was on infliximab (Crohns disease) for 7 years before cancer. At the beginning I remember feeling really drained but as time went on this went away and I tolerated it well. Although it does increase you infection risk I didn't have any serious infections in 7 years. I actually credit infliximab for saving my sanity because uncontrolled IBD is a miserable existence.
I do appreciate that making a decision to go on two types of immunotherapy must be incredibly tough. Obviously we all respond to medication differently but my experience was positive.
Then I got cancer and as my Gastro says cancer will always trump other illnesses but my Crohns has been settled since my diagnosis. It could be that all the other meds have controlled it or it could be that the 7 years of infliximab pushed it into remission.
I hope this helps and I hope you get a break soon x

Crimsonbow · 14/07/2023 14:58

@nappybrained hey, I'm new round here too. And I'm also in that in between land of waiting for tests/results. I've had blood tests and an ultrasound that showed a large tumour on an ovary. I have an mri on Thursday. Trying to live my life with my head in the sand at the moment 🙈 I find night time is the worst for feeling down/assuming I'm going to die

orangeleavesinautumn · 14/07/2023 15:41

nappybrained · 14/07/2023 13:48

Thank you for reply and well done you!
Have family , DDS in 20s early but also youngers too. And a DH bless who isn't very useful. A handful of good friends who will be about too , so am very lucky really. I have a bit of a ND brain so as you at the waiting. I thought I'd enjoy some wine this week, as likely I'll become a temple over the next few weeks!

wishing you all the best - let us know when you hear, won't you xx

orangeleavesinautumn · 14/07/2023 15:42

Breast cancer now is a helpful website if you have questions

Ikeameatballlunch · 14/07/2023 16:15

Welcome to the all newcomers.

Can confirm MacMillan are amazing.

I've had a bad day today, over doing it. Withdrawal from testosterone and some of the oestrogen and doing too much at work this week. Physical symptoms which affects my mental state.

Work is very physical and unpredictable. SEND school. A lot of quick thinking and physical handling. I'm not class based so whizzing all over. They're being fab but I'm in "not many people know" No man's land. I probably shouldn't have gone in on on of the days as anxious is so high but I needed to tie up loose ends.

Many things have had to be changed due to my absence at the start of next term. Actually some for the very much better. Things that have needed to happen for a long time are finally happening.

Ikeameatballlunch · 14/07/2023 16:17

I'm getting very anxious about tamoxifen.

There seems to be no certainty if periods are lessened or worsened. They really affect my joints as I'm hyper mobile.

Would nhs allow a hysterectomy if it is bad?! (And Keep ovaries!)

The worry about uterine cancer will also be big for me.

Ikeameatballlunch · 14/07/2023 16:17

If they stop, massive bonus!

nappybrained · 14/07/2023 17:32

TopOfTheCliff · 14/07/2023 14:01

@nappybrained welcome to the thread nobody wants to be on. Waiting is the worst part honestly! Try to keep busy and stay off Google or you will be planning your funeral. Stick to Macmillan or Breast Care Now or ask us if you have questions. I used the Calm app to stay sane during the early bit waiting for biopsy and scan results. Enjoy the wine as chemo puts you right off it! I’ve just about started enjoying a nice gin and tonic again three years on from the first chemo dose.
Do you think being ND will help you cope or make it harder? I am a logic driven scientist and I think that helps as I don’t get very emotional. The BCNs keep wanting me to cry more and emote but I find the Rage Room much more helpful.

Not sure yet re ND, I'm also science based so I suppose I will see. Better then get the g n t on board too 🤣🤣.
Thank you!

nappybrained · 14/07/2023 17:33

orangeleavesinautumn · 14/07/2023 15:41

wishing you all the best - let us know when you hear, won't you xx

Show quote history

Thank you

Silkierabbit · 14/07/2023 17:47

My periods stopped with chemo and didn't return with Tamoxifen though was 48 when did chemo so close to the age they stop.

I asked about ovaries removal and they said that was possible. I would ask them about anything you can concerned about. I have been on Tamoxifen 11 months now.

Ikeameatballlunch · 14/07/2023 18:20

Thank you. Yes I will.

I have diagnosed hypermobility syndrome. Which can spiral up or down. Periods are bad when the muscles around the joint aren't as good as they could be. Hrt helped but I'm coming off v soon.

Been eyeing a water rower on eBay but I think Dh would have a fit 😂 should really get rid of a load of stuff first.

I need to stop reading about side effects. They could be positive for I know, aside less chance of getting cancer

TwigTheWonderKid · 14/07/2023 19:37

@Ikeameatballlunch I had breast cancer last year and because I wasn't menopausal I was and am on monthly Zoladex injections to shut down my ovaries and make the Tamoxifen more effective. If you are not yet menopausal, has that been suggested for you?

FWIW I was told it would be like " menopause off a cliff edge" but I have had absolutely no symptoms or side effects in the year I've been on it.

Ikeameatballlunch · 14/07/2023 19:45

I'm glad you're feeling ok and I'm sorry about your Bc.

I have no idea if I'm meno or not. I was peri when I started hrt. I do think I'm still having a cycle though - I was about to get a mirena when all this kicked off.

I think it will be off a cliff edge as I've been on hrt, at the same time I can take a decent chunk of time off to rest and try to exercise etc. the added issue is hypothyroidism- testosterone had been extremely helpful for some reason there.