Please help. Overwhelming anxiety since diagnosis

[redglobox]

Hello kind ladies of Mumsnet

I am desperate for advice. I was diagnosed with breast cancer a few days ago and since then have been really struggling with feelings of anxiety, panic and fear. I feel sick, my mouth is dry, I'm losing my voice, I am shaking. I can't focus or even give any thought to anything apart from this. It is worst as the night sets in and I am finding it very hard to get to sleep. I have told my extended family (not my young children) and my husband is being brilliant but there's only so much he can say to talk me down. My mind is just racing all the time. It was already bad but has escalated since I googled something the breast care nurse said yesterday and found something that suggested I have a poorer outlook. I feel in a real crisis about it. I'm not due back at work until the 6th but can't even function in any way right now.

What can I do to control how I am feeling so that I can still function and not be in this constant state of terror? I am worried about how much worse this could get as my prognosis becomes clearer. I'm still waiting for some of the pathology results, don't have a stage yet, haven't started treatment.

My GP surgery is closed until Monday. I am trying to find counseling or therapy but there are so many coming up and I don't know how to find one that can help me with this particular issue. I couldn't get through to the breast care nurses yesterday and have emailed but I don't know if they will respond over the weekend.

Also, just be aware that people that post on forums have backstories you don't know about, different levels of resilience and are often going to paint the worst picture. I know I read all about the hormone stuff on forums and different tablets. I damn near didn't take them with all the horror stories and it was fine. Bit of a side affect but nothing life altering or difficult. So just live in your moment and surrender to the thing you have rather than raising anxiety levels by fighting.

Just wanting to wish you good luck and recommend Breast Cancer Now.
I had a lumpectomy and radiotherapy in 2021 and all well at the moment. I will look out the books I found useful and send the titles.
I had a friend who had had breast cancer and it was useful to chat to her too.
Xx

I also watched Sarah Beeny v Cancer which I found useful.

I’m so sorry this is happening to you. I was diagnosed in May and never would have believed I would be handling it the way I am now. The support of so many wonderful people on these threads as well as family/ friends has got me through. I’m actively in treatment, taking it a day at a time and leaning on those who are supporting me when I need to.

Some wonderful advice above. As the others say, this is absolutely the worst time and it will be more dealable with.

unmn hugs.

So sorry you are going throught this over Christmas when your feelings are heightened and there is so much free time for dwelling on things plus many medics are on vacay so info is delayed.

So hang in there. Call the Macmillan hotlines and talk to their knowledgable people. Let them talk you down. Remember that you don't have all the info yet. Remember that for most patients, treatment is effective.

For a lot of us, cancer is such a trigger word but the reality can be pretty bearable. Remember that you don't have all the info yet. Remember that for most patients, treatment is highly effective and even amounts to a cure.

The first weeks when my DH was diagnosed were really scary - more scary than anything else ever was. I knew nothing about cancer. I thought it was like on TV where the patient is feeling grim, is diagnosed, has horrible treatments and dies in 3 episodes. The doctors posited some of the worst possible scenarios.

But in the end, it was pretty run-of-the-mill. Over the years, I have found that doctors = drama.

Waiting is horrific. I found a lump just into lockdown one. Didn't tell the kids (8&10) until we had a treatment plan. We were given age appropriate books to share with the kids when we told them. Age 46, invasive ductal and lobular. Mastectomy, chemo, radiotherapy, chemical implants, infusions, tablets, BUT 3.5 years after diagnosis I earned (and boy did I earn) my martial arts black belt. You CAN get through this, and will find lots of support from mn. You don't get wet until it rains, and your oncology team will offer the shelter x

www.maggies.org/

My top tip is to ask your GP for sleeping pills - seriously, it will make such a difference to your mood. The period between diagnosis and knowing the plan was absolutely the worst time of my life, as I just cannot cope with no sleep, but I only needed the pills for a few weeks. I am now 6 months from diagnosis, active treatment is finished and I am feeling very thankful. Sorry you’ve had a rubbish Christmas but next year will be better xxx

Thank you so much for all your messages. I am so touched by your kindness.

ranoutofquinoa - Thanks so much for suggesting Liz O'Riordan. I watched some of her videos yesterday and found them so useful. By good luck it gave me one of the things that I think helped me sleep better last night which is seeing someone - Liz herself - alive some time down the line having had a tumor that is both ductal and lobular which I think mine might be. I can hardly write that I am so scared of it.

lemon - I think I need to do the same. I'm just so terrified I can't be strong for them at the moment and I don't want to upset them unless / until I have to.

anita - Thank you I have looked all of those up (and will be contacting the GP tomorrow for sleeping tablets).

lil - I know the timing is pretty awful isn't it! I was told they were trying to see as many women as possible before Christmas but with hindsight, although the biopsy limbo was awful, I would have preferred to find out afterwards. Thanks too for your book recommendation and distraction tips. I usually listen to self improvement and health books which at this point all seems particularly pointless. I was half-way through Peter Attia's Outlive...

drivin - I really appreciate your words and loved hearing about taking your clothes off unnecessarily! I have thought about that quite a few times since. I had never been less bothered about stripping off when the consultant examined me after giving me the news.

stilltrying - I think you're absolutely right about the good habits thing. I keep thinking that in the best case scenario where I am early stage and get through the treatment okay I will need to live the rest of my life with the possibility that this will come back. If I am lucky enough to be in that position I will need to find a good way of dealing with that. I've completely lost the ability to enjoy anything or be happy in any real way. I know I need to enjoy whatever time I have I am just so terrified of what that might be.

pippa - that sounds like really good advice. I'm in a difficult spot as I want to understand everything at the moment and I've always found forums - especially Mumsnet! - the best place to find a particular type of information - I guess it's the human, real-life angle on things. I always felt that I would rather know everything, that knowledge is power... there are a couple of doors I can't open at the moment.

extraenergy - thank you, I will watch Sarah Beeny v Cancer. I am just starting to realise I should read some books on this too. I was thinking to get the Liz O'Riordan one. It's difficult as I can see there will be little time before I need to make decisions about my treatment. I'm finding it hard at the moment to do the research I would like to do (a) while enjoying the time off I have with my family and (b) not terrifying myself with what may be ahead.

dancing - Thank you and good luck with your own treatment. I hope I can find some strength soon.

tarheel - Thanks so much. I think I will print a copy of your message and read it to talk myself down when panicking! I find it hard to look at the long term survival stats and understand that I am more likely to be in with the majority who are still alive at 5, 10, 15 years.

Ican'tfind - Thank you. I was thinking that some books would be really helpful when we do tell the children. I think I have ductal and lobular too, although the consultant only mentioned lobular which has left me feeling confused. Congratulations on your black belt!

SomethingElse - It has been horrific. I've been distraught in the middle of the night, desperate to be able to sleep. I am going to contact the GP as soon as they open on Monday. And thank you.

knittedfairies, militant, unexpectedly and everyone - Just thank you so much for your support. I can't find the words to adequately say how grateful I am for the comfort you've given me at the worst point in my life.

It's my daughter's 7th birthday today so I'm going to be trying harder than ever to forget about this for a while and enjoy the day with her. She loves Matilda and after a couple of birthdays of wanting to get her tickets but not being able to stomach the cost, I bit the bullet and got them this year - we're going today and it's a complete surprise for her. I feel so sick and shaky I am worried about how I'll manage but I know that - especially in the circumstances - I shouldn't miss seeing her face when she finds out 🙂

I know people have already put Macmillan on here but they also do free counselling if you qualify (I don't know what the criteria is!). I took this up as was struggling with my mental health during my second round of chemotherapy and it really helped. Hope you manage to enjoy your day x
www.macmillan.org.uk/cancer-information-and-support/get-help/emotional-help/bupa-counselling-and-emotional-well-being-support

I don't have cancer, but my Dad does, although currently in remission. I do have severe anxiety (medicated).

Where you are is where our family was last Christmas. Found out just before and then had to wait ages for more detailed information. It gives you the time to imagine all of the worst possible things. In his case, he is stage 4, but with treatment, it's now undetectable. He has to have regular injections and medication and lots of blood tests. Something his cancer nurse said was that the treatment would keep him going for a few years, but that new treatment is coming out all the time and that a diagnosis isn't necessarily what it used to be. It will be different for everyone, of course, but you're currently stuck in limbo and that is the worst bit, because you don't have a plan. That's why you googled. The thing is, cancer is so complex and you're not going to find the information you need on Google. Unfortunately we found that after Christmas, due to the backlog it was slow to get answers. They should give you a time frame - if that lapses then chase daily. It's the only way.

I'm someone who needs to know everything and researches everything as it helps me to feel armed and prepared. Can you turn your focus to finding things you can do to help your anxiety?

I have recently done a course with a local charity to help my anxiety. Some of the key takeaways were do things you love doing and make sure you do something nice for yourself each day. For me, I listen to music a lot more now. I also try to get out I nature more, whether it's a walk in the woods, or wrapping up warm and having a cuppa in the garden before the day starts. I also do a lot of deep breathing/meditation/grounding work. The best one for me is looking at the TV and take an inward breath on the short side and then an outward breath on the long side and imagine I'm walking round it. My DH and I went through a crisis a few years back and I was constantly in tears in the kitchen and deep breathing is the thing that got me through. My 13 year old self would be rolling her eyes!

Everything is outside of your control at the moment and you're imagining the worst. Try to focus on what you can do. There are lots of good charities out there - for cancer and for anxiety. Definitely speak to your GP and keep reaching out to people. There are lots of face to face support groups around; have a look and see what you have locally.

Oh and absolutely second getting mindfulness app on your phone. It was the first thing my counsellor told me to do. Great for sleeplessness

So sorry OP. I was going to suggest Macmillan phone line or possibly Marie Curie (my Aunty was a Marie Curie nurse). Not sure if they have a helpline but there would be lots of useful info on the website. Thinking of you & your family 💐

Hi OP so sorry to read this, I can only imagine what you are going through. My SIL recently finished her treatment for breast cancer and all is well now.

I don't know if it will help but I just had a quick google and if you type in support for children who's parents have cancer there are numerous support groups, resources and books out there x

I'm 43 and diagnosed this year. My BC nurse was fab for giving advice about how to tell my 5 and 7 year old.
Calm app is great for sleeping. I also found writing a journal just before bed really helpful.
As everyone here has said: you are in the scariest time. Once there is a treatment plan its a bit of a whirlwind through the active treatment but it feels more manageable. There are a lot of ups and downs as you find out more about the type of cancer, stages, gradings etc. My tumour was even sent to the USA for analysis!
I'm 6 months post diagnosis and have finished "active treatment". I'm back at work and feel like I'm slowly coming out of the shock. Lean on your BC nurse when you need to. At first I felt bad about calling her with what I thought were "silly" questions and concerns but she was utterly brilliant and wonderful each time and just making that call helped me enormously.
I hope your treatment goes well.

@redglobox I've just checked, I still have the books. I'm happy to post them to you if you want to pm me your details x

@redglobox I did a lot of research when I was diagnosed and all it did was make me more stressed so I’d try to avoid it if you can. It’s difficult but try to ‘deal with what’s in front of you’. I reassured myself that the hospital has been treating patients for over half a century and they’ve got a lot of data to work out the most effective treatment.
Can you tell I’m a mathematician!

Hello everyone,

I wanted to update you to say that I went to the GP today and she was amazing. I am now taking Propranolol. I feel so much less anxious. I have Zopiclone for the nights. For the first time since Christmas Eve I feel, well, normal. It feels surreal. I know I can't take these forever and will have to face this without it soon but it's a huge relief to even just have a break for a while.

Maverick - Thank you so much for your advice which I've really taken on board and will be putting into effect. All the best with your Dad.

Lion - Thank you, I really appreciate hearing about your experience and your suggestions.

Icantfind - That's so kind of you, thank you so much. I am having a wobble about sending my address but will try to overcome this and pm you!

LemonDrizzle - I am exactly the same at the moment. I am looking up everything I learn about this and keep stumbling into things that make me feel even more scared. I want to understand everything but I've never pored over something so potentially devastating for me & my own family. At least your profession must help you understand the stats! I stare at the Predict tool and focus exclusively on those who don't survive.

Gail, Rabbits, motherofdragons - Thank you for your suggestions and support, it's really appreciated.

I’m very pleased your GP was helpful and you now have some respite from the perfectly normal but dreadful panic and terror. I hope you are currently sleeping peacefully and your next appointment is reassuring. I think most of us felt better mentally once we knew exactly what we were dealing with and started treatment. Good luck and please update us if you can.

I'm really sorry you're going through this!

Breastcancer.org is a fantastic site run by a doctor who has herself had breast cancer. The forums are amazing.

About your anxiety, some people find that anti-anxiety meds helps during times like this. Also, you'll feel better when you have a treatment plan in place. You're in shock right now.

Cure rates are very high for breast cancer and there are some exciting new treatments. Don't look at stats on the internet - they're all five years out of date, because they don't reflect what's going on right now in time. Survival stats can only look backwards.

The Macmillan support is brilliant. I've used their phone line before when I was looking after my dad and they were great.

Hugs xxxx

@redglobox stop googling!
So pleased you’ve got some meds to help at the moment. Did you get a folder from the hospital with leaflets in? Think mine were from breast cancer now, nurse gave them to me in the breast unit.

@LemonDrizzle10 I might have to ask someone to change the WiFi password! I really am trying to stop but it's difficult. I did get some leaflets from the hospital but haven't looked through them yet, which seems silly given my compulsion to google everything!

Anita - Thanks so much for your kind words and support. I am seeing a new surgeon on Thursday and am hoping for a bit of a mental boost once I have treatment scheduled in.

KhakiMoose - Thank you for being so encouraging and positive, particularly about the stats - it has really helped me to read your comments and I know you are right.

I'm a few days late to this @redglobox but where you are right now is the absolute worst time. Once there's a plan, and you're following the plan (even with the bumps and hitches in that plan) it's much better. Hugs to you and come and join us on the cancer support thread someone linked up thread.

@redglobox I got given a binder thing with loads of info in it when I was diagnosed. I briefly looked at it and never touched it. It is somewhere in the house still in a plastic bag. Just do what you need to do. Propranalol is lovely! Once you have a treatments plan, you will feel better mentally. This bit is the worst. Weirdly, seven years on, I don't think about cancer much - it does dominate for a while!

This was me this time last year. I'm better now.
What type of BC do you have?
The first diagnosis is the worst. Once you have a treatment plan you'll feel a lot better.

Hi, I am going through the same diagnosis now and completely panicking. How are you now?