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

[LemonDrizzle10]

@tilllly and Daisy.

@somewhereonthe517 My chemo started 5 weeks after lumpectomy and node clearance. 4-6 weeks was the time scale my oncologist was aiming for. My treatment was private, so the scheduling was easier than on the NHS - no delays to factor in.

I just wanted to wave hello to the group and report back on my medication change. After over 3 years of Zoladex and Exemestane and pretty hellish joint pains, my (new) oncologist agreed to give me a break, so I shifted to Zoladex and Tamoxifen. It's been 5 weeks and OMG I feel so well! No pain. I can walk. I can work in the garden. I don't wake up with carpal tunnel every morning. It's amazing. I know my oncologist is hoping that I'll try another Aromatase Inhibitor after a short break, but I honestly don't think I can. I feel 20 years younger (I'm only 43 anyway).

I've also started to take Metformin for insulin resistance. Not diabetes or pre-diabetes, just insulin resistance, according to blood tests. The endocrinologist suggested a link between my breast cancer treatments and this new diagnosis, but said it's an area that needs a lot more research.

I've always watched this thread in awe of all of you strong posters, thinking and hoping I would never have to jump in.
But I think I might have to become a member.

I had my first appointment on Friday and I got the dreaded news that I suspected was coming.

I had a mammogram then within ten minutes I was called back in for another.

Then I had the dreaded biopsies.

Within an hour of being at the breast clinic I was told it was likely cancer in my breast and my lymph nodes showed 'irregularities'.

So I'm now waiting til the 20th to find what cancer I have and what the treatment plan (or not) might be.

I'm a complete emotional mess at the moment. I've lots of people giving me platitudes and telling me that I'll get through this.

But honestly, I don't think I will.
I'm not built or designed to be 'strong'. My emotions are always on show.

Already I feel like I'm failing.

I just can't help myself from crying

@drivinmecrazy

You've had a massive shock. Be kind to yourself. Not unreasonable to cry.

@drivinmecrazy so sorry to hear this. It is a huge shock and totally normally to cry. Once you have your plan things will be more manageable, I hope.

@drivinmecrazy I think I posted on your other thread and "invited" you over here.

This is waiting before your team spring into action and yell you the plan definitely the worst bit, it's incredibly easy to fast forward through all the potentially awful things which probably won't happen and you need to be kind to yourself.

When I was first diagnosed with breast cancer, after I got over the initial shock, I found what really helped me was rather than thinking "why me?" to think "why not me?" Then I didn't take it personally I didn't feel any anger, or guilt and I absolved myself from all the "you've got to fight this" crap and was able to put my trust in my team and just take each step as it came along without feeling overwhelmed.

But right now, just cry and be kind to yourself.

Glad Tamoxifen is better KentishMama

So sorry you have cancer drivinmecrazy. It's normal to be overwhelmed with emotion when receiving a cancer diagnosis as you've just had a huge shock. I found the best way for me to get through the initial stages was distraction which isn't easy but things like watch TV, I did Below Deck, listen to music, garden, swim, anything you enjoy. Tell people as and when and only if you feel ready, and you will also acquire new cancer friends along the way who understand best. You don't need to be unemotional or get through the whole thing now, just get through each day and each day you will be a day closer.

I have my DIEP tomorrow unless an emergency comes in so won't be around for a while but there are lots of lovely people on here who will offer support if you need it. I felt a bit better when treatment started like cancer was being tackled. It was a difficult year but now 2 years out all clear and life is very good again.

@drivinmecrazy sorry you have to join us- please listen to the wise words here especially @Penguinsa.
not unreasonable to cry. if you need to talk to someone, breast cancer now have a helpline, or Macmillan. Stay away from Google.

Hopefully they will be telling and not yelling the plan!

Day five post chemo it’s always the worst. I didn’t sleep a wink last night bloody weather

I've just got home after completing my final treatment. Feels like a whole weight has left my body (for the next 12 weeks anyway while I wait and hope for a positive scan).

Brachy had a bit of an issue, one of the rods slipped and within 10 mins of my ct scan I was back in theatre having it inserted again. So feeling a bit more sore and woozy as I was sedated twice and have antibiotics as a precaution. But I am so glad it's all over. Now to start living my life again.

Also had to laugh with the shit timing of my gp surgery sending me a text saying to contact them tomorrow about starting HRT 🤣

Get to surgery after a 2.5 year waiting list and they cancel it indefinitely due to a blood test in 2022 which they only just noticed. They had me in a gown with DVT socks on and told be in there in 15 mins and whole theatre to myself and wham cancelled. Then they tried to blame me for 1 appointment in June I rescheduled but they all knew and there's been about 50 appointments they could have noticed at.

Cat was very happy and DD has been telling me not to do it and keeps pointing out helpfully 101 ways you can die in surgery. I have a new job abroad coming up so may now not be able to do it though I do wonder about it sometimes I want my pre cancer body back and I can't get that and it would be this 11 hour op then another op in a year and 3 years of scars, possibly weakened stomach muscles. I just hate having one breast cut off though now lost all the weight gained with cancer treatment and normal BMI like pre cancer and the thinner I get it really helps and hair is nice again now. I don't want anything that affects swimming and my new job is somewhere healthcare is more basic. Has anyone had an implant though think that's same issue - what is recovery time like on that? And op length and appearance if you don't mind sharing.

DD is now making brownies and will give me some. Last night she was if they cut an artery you will die are you sure you want to do this? 😂And they asked me who would help and I said DH he's brilliant, we are the right way round as he's a great nurse and they said would DD help as well. I asked her and she said if at risk of death.

Hi I have a LGPS civil service / public service pension and my current employer is very keen to take early ill health retirement (am 58). However, I only have 7 years service in a part time role and a low grade so it probably won't amount to £1K a year and might not even live that long! I think I will stick with the Death in Service and dependent pension for my partner (now husband!)

It might be worth getting estimates and exact terms and conditions Paula if you don't have them. I was in civil service part time for one job and the pension estimate I got was very good, much better than private equivalent. But it was final salary when I was there. Though my friend worked in local government and their terms and conditions were poor compared to ours for things like redundancy, they got like a quarter of what we got. I remember ours were so good when they offered voluntary redundancy apparently 90% of people applied for it and think most of other 10% had started in past 6 months.

@penguinsa so sorry about your op. I am behind you in this process so can't offer any advice.. just shocked sometimes at how un organised things are. Hoping that if you rattle their cage they won't put you back on a waiting list. Sending moral indignational support.

Plastics seem to be trying to find a solution but endo are not and it needs endo to solve. I can't even establish what tests need to be done and it seems person required may not be available until 3rd September and they are basically saying tough. Though I do think Chief Execs office maybe onto it now so hopefully things will happen.

What a nightmare, penguins. Particularly with such a late cancellation. The waits are awful.

Yes thanks Dancing Its rubbish and endo will not tell me what tests and sticking at no-one can speak to me until 3 Sept. And in meantime I have to stay off Tamoxifen to stop stage 4. And tests are for stress level (also A level results tomorrow). I can't apparently even pay privately to get round this shambles. And endo never answer their phone. I do think Chief Execs office are on to it from 7.50am phone call so hopefully someone will be able to get endo to see it matters, it apparently means any op including life threatening would be stopped at the moment from what surgeon said. I hope that's not right. Ironic thing is I am 99.9% certain I don't have the condition, its just one 2022 rogue blood test for stress levels at night when I wasn't sleeping and was very stressed. But also meant a whole surgical team and a theatre was empty all day. And they all had 2 years to realise this.

Hi have come here from another thread.
Am in a total panic after an ultrasound makes it v probable that i have breast cancer. A 3cm mass plus another tiny thing.
And I was feeling all hopeful as the ultrasound suggested that my lymph nodes are clear, but now I've just read that actually you can't tell from an ultrasound!!
I'm so so so so frightened and panicky.

Hello @breastcancerpanic glad you found us! Please ask anything

Hello everyone, I've been on mumsnet for a number of years, but only just found this thread. I was diagnosed with Olfactory neuroblastoma in 2022, had treatment and am still around to tell the tale. I would be interested in chatting to anyone else who has also had this fairly rare cancer, so not sure if there are any other mumsnetters that have suffered with it.

Best wishes to everyone going through cancer of whatever form.

Hello @Scentsless I hope you’re doing ok now. Good to hear from people who have had their treatment.

@breastcancerpanic sorry to read your news. I am in the same boat although a few weeks down the line. It is such a shock. The scan does give a good indication of clearness but they will want a sentinel node biopsy to confirm it. I was glad to hear my nodes were clear and am currently waiting on tests to decide on onward treatment after lumpectomy. have they said what the next steps for you are?

*dancingwhilstfacingthemusic thank you for your reply. And apologies to everyone for being so self-absorbed right now. I need to start giving as well as taking from this thread, but just can't at this moment when it is so raw. *

I feel a bit better now... I'm having such a learning experience from this. At one point I seemed to go to the bottom of the well and just think about the fact that it could be stage 4 and mean I'm going to die soon - and somehow just thinking about that possibility and crying about it has helped me. I think I was panicking because I was scared to face it.
Now any news better than that feels like it would be good news, and I've learnt that 3cm is not that big and could be stage 2? That's what I am hoping for...
I don't know next steps - they really want me to wait for Wednesday when we have the information from the biopsy. But things they talked about were surgery to remove the lump (I don't think they talked about removing the whole breast but I can't be sure). They mentioned radiation, chemotherapy, hormone therapy. but said we would have to wait to know what to do.
They did say that they didn't think I would die of this, so actually (given my bottom of the well experience) I am finding that reassuring.

An utterly lovely friend came to see me today. I've been saying that I'm basically okay, but she just came round, and took me to hers for a cup of tea. We talked about the cancer issue, and then also about other things. She thinks that wallowing is unhelpful, and told me to just ring her if I needed help. I feel like I've really learnt something from it (you know - about wallowing not being helpful, like she said - didn't take a genius!).

*dancingwhilstfacingthemusic sorry just a bit more reply. I'm so glad to hear that your lymph nodes are clear. Have you already had your lumpectomy and a sentinel node biopsy at the same time? What are the tests that you are waiting on? *

@breastcancerpanic
sorry this is happening to you too. I am mid treatment for breast cancer too. Have had surgery- lumpectomy - and now waiting for radiotherapy. In my experience I found the uncertainty the worst part. Also found it an emotional rollercoaster. Good days and less good. You will get support here and also from your breast care nurse . Hugs to you xx

bewildered hedgehog I love your username! Thank you v much for this.
I feel a lot calmer now. am going to try to enjoy today.