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New to forum...newly diagnosed

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Re: New to forum...newly diagnosed

Hi Fairy Dust

 

Youve certainly had a lot to contend with and I’m amazed you are still working. 

Everything seems on standby with me although I do potter. I could say the house is in fine fettle ( lovely to see that word ) but I would be lying .... it’s not too bad as I just started this journey recently. 

I’m more a walker so am starting to get back to that even if I don’t go too far at the moment. I think if I ran I might just keep on going ....

 

Feenix xhugsx

Member

Re: New to forum...newly diagnosed

Sorry got called away whilst writing last message but had a bit more to say!
Rabbit caught in the headlights is a perfect description, that was me exactly too! How is everyone sleeping? I keep waking and that is definitely the worst time, the thoughts just keep going round and round in my head. I even find myself planning my own funeral, although generally I’m quite an upbeat, strong person which a strong desire to get through this.
I’m thinking of starting a journal because I think the process of writing everything down helps and I’ve ordered a couple of books on Amazon, Victoria Derbyshire is one of them. I’m hoping they will inspire and motives me and bring me up when I’m down. Anyway that’s all from me for now, best wishes to you all xx
Member

Re: New to forum...newly diagnosed

Blimey Fairydust you really have had quite the ordeal. I’m at the stage of waiting for HER result and then will get a treatment plan. I still can’t quite believe I am saying this stuff and talking about me!

Feenix and Cass I was only diagnosed on Thursday so house hasn’t gone to rack and ruin yet, although every cloud has to have a silver lining so a bit let housework sounds good to me. I also run a fair bit Cass, I did a half marathon a couple of weeks ago, oh how life can change! I have a problem with my groin/hip when I run at the moment which I have obviously out down to cancer spreading. Do everyone get an MRI my Doc hasn’t suggested it but for piece of mind I think I need it.
Keep the humour x
Member

Re: New to forum...newly diagnosed

Hi feenix,

 

I’m the same, I run every morning and I'm incredibly active, I find just sitting around boring and like to be kept occupied. I felt so helpless and lacked motivation after I had my scan, but since I got my definitive results on Thursday, I gave myself a good talking to and I’m trying to go back to being as ‘normal’ as possible. I can be absolutely fine, then bang! The reality of it hits me all over again. I’m finding that writing all my thoughts and feelings down in this forum so helpful, and knowing that people know literally how I feel is somehow comforting. 

 

I have my CT scan Wednesday and results on Friday. I feel like there’s a washing machine in my stomach spinning with dread, but once the wait is over we deal with what we face next. 

 

Sending you you my thoughts and well wishes for your results xxxx

Member

Re: New to forum...newly diagnosed

Hi fairy dust,

 

I did write a long post but I think I must’ve pressed cancel rather than post 🤦‍♀️

 

Im so sorry to hear about the length of time you are having to wait between appointments and your travel time. It truly is mental torture. Red tape 🤬! Glad you finally have a timeline for your surgery though.

 

I found my initial lump five months ago but a gp at my practice couldn’t feel anything so wouldn’t refer me (I also was told she wrote down the wrong breast in my notes 😡). Fast forward five months and another lump appears under my arm. Thankfully I saw another gp and he referred me immediately. I was angry and frustrated that this could’ve been caught earlier but I can’t dwell on that. 

 

I think trying to find a sense sense of humour in this awful situation is hard but the small things can just make you giggle. When I received my results on Thursday, I told my husband I felt like jumping out of the consultation room window, he laughed and told me I’d not get far, we’re on the ground floor! 

 

All my thoughts, hopes and wishes are firmly concentrated on us all getting through this experience and living a full healthy, happy life xxx

Member

Re: New to forum...newly diagnosed

Hi fairy dust,

I completely agree, I thought I was healthy, doing everything right, eating well, running, and never envisaged cancer. I went 5 months ago to my gp with a lump and she couldn’t feel anything and wouldn’t refer me. It was only two weeks ago I felt another lump under my arm and another gp in the practice referred me straight away. I was so angry that this could have been caught earlier but there’s nothing I can do about that now.

 

I’m so sorry that your travel to consultations and delays are prolonging things, it must be mentally agonising, I know the waiting around and feeling helpless is torture. 

 

My my life is now in someone else’s control which is hard to accept, but I’m trying to trust in the process. But yes, keeping sense of humour is helping, when receiving my biopsy results on Thursday I said to my other half that I feel like just throwing myself out of the consulting room window, he looked shocked but then calmly told me I’d not go far, we’re on the ground floor! 

 

My thoughts, hopes and well wishes also are concentrated on a healthy, full life for all going through this xxx

Member

Re: New to forum...newly diagnosed

Oh and meant to say (as if I hadn't said enough). I've been like you, Feenix, with the housework. I've carried on working, though this is becoming harder as the time passes and my brain seems to be wearing out!

 

Now I have an ironing pile mountaineers would be eyeing up with enthusiasm and a house which needs a very good fettle. Well I do need something to keep me busy to the end of next month!!

Member

Re: New to forum...newly diagnosed

Sorry for butting in, but I seem to be doing it a lot on other threads at the moment, as I'm in limbo waiting for my op on 29th April.  

 

Yes, Cass, I think the waiting is the cruellest and scariest part of all this and don't we get a lot of stages where we are waiting for the next bit. Luckily for most if us, I think, we feel healthy when we are diagnosed, so it's the mental marathon we run which takes it's toll. Mines been a long wait. My mammogram was at the end of last October, my diagnosis was 21st December. The area I'm in didn't do the reconstruction I wanted (DIEP flap following double MX), I had to find the surgeon who would do it myself but couldn't get the MX done at the same hospital, so that delayed things whilst my amazing lady plastic surgeon found me an equally amazing lady breast surgeon and now I travel 2 hours for consultations ect. The ops being done in a private hospital, but in an NHS slot because the surgeons come from different hospitals!!! Red tape and lack of information from my original area means it will be 6 months since they found the 4 areas on the mammogram when the cancer (that's progress, I usually call it It) finally comes out of me.

 

I've had a supermarket meltdown! Mind went into overload whilst reading the packaging to find out what was in something and I just had to get out and left a full trolley in the middle of the aislwe

 

I did have a really good laugh whilst on the phone with a friend though, as we discussed the weight loss benefits of a double mastectomy! I promptly  fetch my weighing scales out yo try to work out how much I would lose (about 5 or 6 pounds if you were wondering). I then googled it and there is actually a chart where you enter your measurements and it tells you how much they weigh! Someone on the site wondered if there was a chart for men's bits! My friend commented, "About 2ounces". I may be giving my age away with the imperial measurements!!

 

Sorry again for butting in. Love and hugs to you all and my hopes and wishes that we all come through this as healthily, whole, sane and still with our sense of humour intact as possible. xxx

 

 

Member

Re: New to forum...newly diagnosed

Hi Cassie. 

Youre doing better than me with routines esp housework...I must get hoover out sometime soon !!! Sometimes don’t feel like doing anything which is entirely opposite to the hyper me before my initial appointment for check/biopsies. I only hope I’ve lost the look of a rabbit caught in the headlights. I’m trying to switch off a bit and conserve energy for whatever is to come.... there’s no escape ... yikes. 

I’ll know soon enough about scan results... hope you do too but it’s not easy waiting.

 

feenix xx

Community Champion

Re: New to forum...newly diagnosed

No there's lots of us out there !!! it made me feel so much better when I first posted and got some replies from real people who understood - made me feel less alone and less " abnormal" .
Community Champion

Re: New to forum...newly diagnosed

Thank you Jill. Makes you realise that your not on your own.
Community Champion

Re: New to forum...newly diagnosed

Welcome to the forum Gill .It does get easier but the first few weeks are very hard .Lots of support and advice here .
Community Champion

Re: New to forum...newly diagnosed

Hi all. New to this kind of thing and to what to put even. I was diagnosed this week. So shocked. my emotions are all over the place. Can feel ok one minute and crying the next and as mentioned in other posts every ache or pain and yes you feel it’s moved somewhere else . I have surgery in 16 days and counting. This is so so scary and out of my control. Every bone in my body aches and keep telling myself this is tension. Oh boy it’s tough.
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Member

Re: New to forum...newly diagnosed

Hi feenix, the waiting is almost cruel, it’s invading my sleep and making me so paranoid. Trying to stay in routine, walking the dog, dragging Henry hoover out and blitzing the house and trying to pass the time in a way that’s as normal as possible. I’m so glad I’m not alone in my thinking, sometimes you feel you’re going crazy. I hope all goes well for you on Monday 🤞

 

cassie xx

Member

Re: New to forum...newly diagnosed

There’s a pdf in publications about talking to children Michelle21 which may be helpful.  feenix xx

Member

Re: New to forum...newly diagnosed

Sometimes finding humour in this awful situation brings me back from a dark place mentally, maybe I should stick to Sainsbury’s home delivery service in an effort to avoid the freezer aisle rampage!☺️ Xx

Member

Re: New to forum...newly diagnosed

Hi Cass 

I know how you’re feeling ... my usual aches and pains all seem suspect but I try a bit of meditation or anything to distract my thoughts.

Things are out of our control and it’s scary but I am told that things will improve when we have results and  a plan is made. I’m having MRI on Monday.

its the waiting and not knowing....

 

feenix

Member

Re: New to forum...newly diagnosed

Thanks Jo, I like your humour! Every time I read a comment I’m finding that the tears are coming. I’m looking forward to getting to the stage where I am amazing myself. 😀 I guess the whole thing is a process that needs to be gone through and can’t be rushed, it’s just a real bummer being at the beginning and not the end being able to look back at myself and say I got through it all. I tfound myself worrying that the cancer has spread throughout my body today so it is good to hear this is common and actually the chances are low. Sorry I know I am waffling on it’s just the whole thing is surreal. I’m sure everybody thinks that too, like you are watching it all happen to someone else. I’m sure once treatment starts it will become very real. I’m looking at a mastectomy although it’s yet to be confirmed. Strangely enough st the moment I don’t even care about that, I just want it all out. I have 2 lumps and what looks like one lymph node infected. No one said what stage this is so I don’t know.
Anyway I’ve waffled enough, thanks for listening x
Community Champion

Re: New to forum...newly diagnosed

Welcome ladies, certainly busy here today! you will become accustomed to the Supermarket meltdown in time, it's along the lines of going on a rampage around the aisles of Asda ( Other Supermarkets are available) shoving everyone head first in to the nearest freezer!! 😜

 

As you can see we try and keep things light hearted when possible but are also a fountain of knowledge between us so can support , listen and hopefully answer any questions you have 😊 It takes a while to let it all sink it but it does and you will amaze yourself with how you will cope! Xx Jo 

 

 

Member

Re: New to forum...newly diagnosed

Thanks Jill, good to know there are people here to help and advise. I think I’m still in shock from it all. How did your son cope?
Community Champion

Re: New to forum...newly diagnosed

Cass

 

Oh remember that feeling, just wanted to be the other end of it all and it seemed a long way off.  Am now 18 months post diagnosis and eagerly awaiting the start of the lawn bowls season, which was a major aim for me to get to this time last year.

 

Helena xxx

Member

Re: New to forum...newly diagnosed

Thanks Helena, it’s good to have a support network and express all these feelings and anxieties. If only I had a time machine x

Community Champion

Re: New to forum...newly diagnosed

Yes Cass, no matter how hard family and friends try only people who have been through this can truly understand how absolutely terrifying this is .This is a great place to express your fears without upsetting /worrying those around you .x
Community Champion

Re: New to forum...newly diagnosed

Welcome Michelle -lots of new members today.My son was doing his AS levels when I was diagnosed 3 years ago .
Member

Re: New to forum...newly diagnosed

Thanks Jill, it’s good to have a place to come where everyone is in the same boat and can truly understand what we are going through. As great as loved ones are, it’s different speaking to and sharing fears with those that truly understand. My GP has prescribed me with a short course of diazepam to ease anxiety which has really helped. Let’s hope those odds work out for me, cassie x

Community Champion

Re: New to forum...newly diagnosed

Cass

 

Welcome to the forum, not the place you would want to be in, but you will get loads of support on here from the wonderful ladies.

 

This is the worst time waiting for your treatment plan to be put in place, but once it is strangely enough it does get easier because you know exactly what is going to happen and when.  The feeling that every little ache or pain is it spreading is normal and oh we can all relate to that on here, that is your anxiety taking over. 

 

Come on here whenever you need to rant, rave whatever, and there will always be someone to help you because we know just what you are going through.

 

Helena xx

Member

Re: New to forum...newly diagnosed

Hi Feenix, I was diagnosed yesterday With IDC so still in a state of shock. I am waiting for some more results on Thursday and then I will know if I will have surgery first or chemo first. I have to say the whole thing is pretty scary. I’m most worried about telling my two daughters especially as one is oing her A levels in June and currently revising.
Mediation sounds like a good idea and true that no matter how much you worry it won’t change anything.
Community Champion

Re: New to forum...newly diagnosed

Hi Cass, welcome to the forum.The early stages when you don't know what you are dealing with are really hard and very scary .Once you have all the pieces of the jigsaw and you know what treatment you need you will feel calmer.Just about everyone becomes hyper aware of every ache and pain after being diagnosed ,things you wouldn't have thought twice about suddenly become sinister in your mind .It is actually pretty rare for breast cancer to have spread outside the Breast when first diagnosed - something like 5% of cases so the odds are in your favour 🤞🤞🤞Jill.
Member

Re: New to forum...newly diagnosed

Also new to the forum. I was diagnosed last week with stage 3 bc, spread to lymph nodes. Now awaiting a ct scan to see if it has spread further. It’s the most terrifying and agonising experience I’ve ever dealt with. The not knowing and feeling like your life has been taken out of your control is horrendous. I now think that every pain, twinge and feeling slightly off means the cancer is eating me alive, it’s so difficult to cope with. 

Community Champion

Re: New to forum...newly diagnosed

Give it time -😬
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Re: New to forum...newly diagnosed

Thanks Jill....not experienced anything supermarket related yet.

Feenix

Community Champion

Re: New to forum...newly diagnosed

Welcome to the forum Feenix - hope today is s better day for you .Yes , wobbly days are par for course ,also look out for the " supermarket meltdown " which seems pretty common too !!! The anxious waiting is torture but once you get going with your treatment it does feel a lot less overwhelming .And yes it is very surreal
- like it's not really happening to you .Good luck with your MRI .Jill.
Member

New to forum...newly diagnosed

Hi All

Diagnosed last week grade 2 IDC..having MRI next week to determine size, due for surgery within a few weeks. ER + 

Although trying to keep my head in gear I did have a major wobbly day yesterday but I reckon that’s par for the course. It’s a rubbish way to lose weight !!! I’m trying meditation and telling myself I can worry myself sick but it’s not going to change anything.... it is surreal though.

The waiting and wondering is the worst.

 

 

feenix