Hi everyone. This is just a long, selfish rant so feel free to not read on. I just need to get it out of my system as my lovely husband can’t take anymore of my ‘what if’ conversations.
This is me…
Diagnosed with grade 2, er+, hep2-, 27mm IDC in December last year. Lymph nodes looked normal.
Surgery was lumpectomy and slnb in January.
Results in march said my slnb was positive for cancer and they didn’t get clear margins. But tumour was smaller but there was lots of dcis too.
2nd surgery on march 19th for axillary clearance and cavity shave.
Results are due on 29th April which is 6 weeks after op.
Basically I just can’t cope with all these long waits. I’m going crazy with anxiety. My nurses are sick of me phoning. I know the upcoming results will be important for deciding whether I need chemo. If I have radio or chemo next, no doubt that’ll be a long wait too. I am sure the cancer is just rampantly running wild in my body. I just want some one to say yes I need chemo or no it’s radio next.
I feel like everyone else gets results faster and has been offered scans to check spread. People also seem to have had genomic tests done but I’ve been told I can’t as I’m lymph node positive.
I feel like I’m drowning in a dark lake. I can see my husband and kids on the shore but they can’t hear me calling.
I’m sure lots of us understand exactly how you feel , family and friends do get to the point where they really don’t want to discuss cancer anymore and often really don’t grasp what a terrifying place it is to be - the cancer twilight zone !!!
It would be wonderful if results came quickly to put us out of our misery but they rarely do . Keep ranting here - we all understand the need to get it out there rather than it festering away in your poor anxiety ridden mind .
Bluesatsuma … I’ve seen your name many times on this forum as your situation is similar to mine… but you’re ahead. I’m due a mastectomy and node clearance on the 18th and similar to you, all low level until it popped up in the lymph node. Cue, nitemare really begins.
My surgeon said there’s no point of discussing treatment until we see what they have after they analyse the breast and nodes. Best case, is they find no more and it’s possibly radiation or worse, chemo etc… my first thoughts are ‘please don’t let me have to have chemo’ but then a split second later I’m thinking I want chemo to give this fkg cancer the biggest kick I can!!! All these thoughts and feelings are sooo much.
Like you, I feel that my husband is at his end after 6 weeks of this … he’s been great but when they said the lymph node biopsy was positive he sort of deflated right in front of my eyes and he can’t seem to get back to that ‘everything is going to be ok’ mode again.
I have my black hole vs your black lake … so I get it. I feel so alone and trying to hold it together in front of my boys (still haven’t told them - another horror I need to think about) is exhausting… I long for schools to return next week.
So… I can’t help but I’m with you on this. Let’s just say that whatever the results, there are treatment and cure options. Yes, they’ll probably be grim … but they’ll give us more years than if we didn’t have them.
Hi @donna_51. Thank you for your reply. Its so hard isn’t it. But you ladies on here are so helpful and its great to know that I’m not alone. Its really hard for the partners as noone asks how they are. My husband has been amazing but I feel its getting harder for him every time my treatment changes. I am sorry for my little rant on here but only you ladies understand. I hope your results are good news Donna. Keep us posted x
Hi @Jill1998. Hope you’re doing well. Thanks for your reply. It does make me feel better to know I’m not alone. It’s so hard waiting because my mind just constantly asks what’s next. Hopefully it’ll be a fast 3 weeks and good results this time. Good luck to everyone waiting x
Firstly well done to you both for getting this far, wishing you both health and happiness going forward, please take one day at a time, keep ranting when you feel you need too, it really helps.
Also a. Cup of tea with that special friend, I find always help
Totally understand how you feel. My surgery has been delayed as other things have cropped up along the way and now coming up to two months since diagnosis. I feel the initial shock of diagnosis has worn off not only for me but also for those around me. I almost see my husband glaze over when I talk about it now and, understandably, it’s the main thing I want to talk about at the moment. People talk to me about things in the future and I don’t have the head space for that yet and think I’m probably seen as being negative (after all I am apparently “lucky” as I have the “good cancer” which has been caught early…). I’ve started writing in a journal to keep expressing myself freely which I have found helpful. The waiting, waiting and endless waiting is horrific and changes to plans so upsetting. No great words of wisdom, but just wanted you to know you are not alone. x
Oh lovely i am sorry you are feeling like this.
Dont ever think its a rant, its good to get it out.
We all feel like it at one time or another and i do think though, family and friends need to shut themselves out for their coping mechanism.
It always feels like things ars going slowly and takes forever and its very frustrating as these feelings you are feeling are real.
I know its hard but i try to take one day at a time.
Just concentrate on this day. If you are feeling well, try and take a walk if you want restful day get comfy on your lounge and watch movies. Sometimes its hard to concentrate. Write a journel, i find this very therapeutic especially with my swear words😁 let it flow how you are feeling.
Nurses aren’t sick of you, they are there to help. We all feel that too, am i being nuisance no you not.
Your reasons for calling are valued. The waiting is hard 6 weeks seems ages away, but it will go quickly. If anything comes up, they will contact you.
I live in Australia, but from the uk originally. I was diagnosed with stage 4 de nova at 49 in 2022. I am already on my 5th line of treatment. I was diagnosed DCIS er+,pr+ her 2 neg. I have done two clinical trials as i have the pik3ca and TP53 mutations. Unfortunately, after i pushed for a second biopsy in my hip bone, my cancer has changed to triple negative. I am now trying Sacituzumab govitecan as the doxorubicin pegylated liposomal didn’t work, and it’s spread to both lungs and more in my liver and bones.
I have been told to get my affairs in order. I have now got my palliative care team behind me and my two teenage children. It’s just a relief for me to be organised.
In a way i am so blessed i can. But one thing is, i am not giving up. I am talking with oncologists in Sydney at a research centre on more clinical trials phase one, different from my other trials as now, if i fit the criteria i will be like a human guinea pig.
Talking with my kids, it will be hard as it’s an 8 hour round trip once aweek for the first 6 weeks. But it in my mind i know i tried everything.
Its so amazing now the amount of treatments available. I am learning heaps. My doctor said i will know more about clinical trials than her .
One nurse said to me, you can only control whats happening to you with lifestyle, family.
Concentrate on that and leave all the medical side, scans treatments to your medical team. They are in charge of that. They are working behind the scenes. Discussing, results what the next stage is it chemo, radiotherapy or targeted therapies. I have radiotherapy as a palliative measure if i am in pain. I call it spot maintenance for me
Have you thought of asking your GP or oncologist a referral for a councillor. I found an amazing therapist, i see her once a month and just unload how i feel. I walk out so much lighter. Also you can get help with antidepressants even a small dose to help with the anxiety. Cancer doesnt just effect the body or physical side, i think the mental health side is so important to keep a happy balance.
Anyway i have waffled on a bit. Just one day at a time.
You have every right to feel how you do.
As for worrying your cancer could spread in the meantime, your medical team will on top of this.
Its trusting them, they will have you on treatment in no time. Any cancer isnt right, but finding it early you will get through it lovely. Let us know how you are going. You are in thoughts and prayers sister. Keep strong 🩷
I would definitely second @southwest123 ‘s suggestion of having a journal, I still have and use mine which I started when I was diagnosed in 2021.
I’d love to tell you it has lots of regular deep and meaningful entries: in truth it’s filled with sporadic rants and more than often a stream of profanities
I find that simply the act of putting pen to paper forces me to slow my thinking down and order my thoughts: it’s a very useful tool for helping me just stop and take a minute and stay in the moment
Well done on getting this far, please continue to talk to us on the forums and maybe look into chatting as part of an in person support group: it makes such a difference to talk those that “just know”
Oh Bluesatsuma, I completely relate to how you are feeling. My surgeries were in 2020 (also had unexpected positive sentinel nodes from first op) but during my hospital stay and the wait for results of my node clearance I felt desperate and like I was teetering at the edge of a cliff. I had a meltdown whilst in hospital and a very kind physio took pity on me and got the ball rolling for me for counselling. Which was a great help. Even though it took time to get the first session it was a comfort knowing I’d have someone to talk to. I hope that whatever the results you get your plan in place soon.
Gosh @Cherry38 you have been on quite the journey. I find it amazing when i read stories like yours that you are so much stronger and optimistic than i feel with my far less complicated situation so far. Sending you lots of courage to Australia. My husband’s cousin is over there too currently fighting hard with optimism and strength. Good luck and thanks for your kind words. X
@Pollyann@adoptedmanc@southwest123@Tili Thank you all for your encouragement. I feel a lot better knowing I’m not just being melodramatic. Everyone is feeling similar to me and although i wouldnt wish this on anyone, it is good to feel less isolated. Thank you all and good luck with this journey xxx
Wow @Cherry38 I just wanted to say you’re an amazing woman. Frankly, I would dilute my admiration of you by trying to put it in to words, so I will just wish you more strength and peace as your journey continues.
Every single one of us imagines the cancer running riot in our bodies @bluesatsuma but that’s not how it works, particularly for the 70% of us who have Er+ HER2- tumours. It’s hard for us to hear but the medical profession do not consider breast cancer to be a medical emergency. We do but they don’t. What they do want to do is use their resources wisely so data collection and compiling a full picture of the treatment needed is essential. To go off half-cocked could mean further treatment down the line and could have the effect of your loss of trust in their expertise. It is incredibly hard and unsettling when the goalposts keep changing and the cocktail of fear and frustration makes day-to-day living difficult. We get it when no-one else in your life does so keep posting here. I wish I could give you a big hug and tell you you’re going to be alright - because you will be. This will be disappearing in the rear view mirror very soon.
@Tigress thank you. You are totally right and I must trust them more. I guess I just feel that I’m one of thousands on their list and that I’m the lowest priority. I am in the 70% with the easier type but since it was found in my lymph nodes I’ve started feeling like this could all spiral. But I need to take a deep breath and let them gather their info and trust them to get me sorted. Thank you for helping me regain some perspective. I am super impatient. Going to go back to work next week to reset my sick pay in preparation for chemo months and to help pass the last 2 weeks of the wait.
Thanks and I hope all is good with you x
I totally get the impatience @bluesatsuma I’m like that too. Actually this whole experience has taught me the patience I have never had - whadya know, you CAN teach an old dog new tricks.
Just on the point about feeling at the bottom of the priorities, I had three conversations with the oncologist before being discharged back to my GP, the third of which I requested as I had a list of questions I needed answering before I could make peace with my situation. My take away from that call was that I am in their care for good, no matter what may happen or when it happens, I would be immediately back in the system and cared for. That would include a situation such as my refusal to take endocrine treatment - I didn’t refuse but I don’t think I’ll see out the full five years so wanted to know I wouldn’t be penalized for going against their advice. She was almost offended by the suggestion and stated firmly that the NHS doesn’t work like that - good to know. BUT, it is important to accept that there are women, particularly those at Stage 4, who understandably have more time and attention devoted to them, rightly so. So the resources that oncology have in the NHS has to be finely balanced to cater for all competing interests. So rather than imagining a linear list from 1 to 1,000 with you at number 999, try to imagine different levels - say level 1 = patients 1-100, level 2 = patients 101 - 500, Level 3 - patients 501-1,000. So you may be in level 2 with 398 other people at the moment and once active treatment is ongoing you’ll probably drop down to level 3 with 498 other people. It’s not an emergency, they know what they’re doing, you’ll be fine. Hope going back to work helps pass the dratted time! Big hugs.
Yes I agree @Tigress. I obviously know that others are more ill than me and therefore higher priority. Family life is hard to focus on while I don’t know what is happening. Need to accept that there’s nothing I can do and concentrate on the kids x
Hi @bluesatsuma
How are you doing this week? Have you found any peace/calm at all? I’m still on the nauseating carousel of thoughts and feelings… dreading my op next week, terrified of more bad news after but then swing round to ‘tf they found it’ and give me any treatment I need to kick it up the arse.
I’m eating rubbish, not sleeping so none of that helps either.
Anyway… just wondering how you’re doing with the black lake! x
Hi @donna_51. I’ve actually come up for air from the black lake a few times. It’s been crazy at home with a leak in the wall and kids activities so I haven’t really had much wallowing time. It’s just over 2 weeks till results day but I’ve left a message with breast care nurses asking if the MDT have discussed me yet. How long have you got to wait still? It is the hardest part of all this for me. X
So glad you’ve had some light relief … even if it was a leak!!! My boys arguing actually makes me feel a tiny bit better!!
I have my op on Thursday and then I guess the standard 2 weeks agonising wait. I’ve been told to just focus on the hurdle in front for now, I.e, the Op but I’m bracing myself for more bad news in the future. It’s another thing I hate about all this - my natural optimism in life has completely disappeared
At my pre op appointment they asked ‘do you have any heart problems’ standard question obviously but I burst into tears as I would have no idea would I? I didn’t know there was bc hiding away, why wouldn’t there be heart disease too. Sorry… sometimes I start typing with a positive vibe then end up ranting!!!
Keep on sucking in that air to help you when you go slip under again xx
.
🩷
