Am I odd

Ok, here goes, I wanted to write this post because I am beginning to wonder if I am normal or am I in denial. Here goes…

Three years ago in 2008 my mum was diagnosed with breast cancer, I was absolutely distraught and found it very hard to speak to mum without breaking down as I was petrafied she would die. Two months into her diagnosis, I found a lump. I went to my gp and was told to go away and I was being paranoid due to mums diagnosis. I rang up the BCC helpline and told them I knew there was a lump and what should I do. They told me I must go back and ask to be referred. I went back and this time she waved her hands in the air and told me to go away and stop being so dramatic. I was very worried by this time, so went to a walk in GP centre, and low and behold the lump was found straight away by the doctor. I was beside myself because the shock of actually being told I had a lump after being dismissed was really awful. The doctor in question faxed my GP insisting I was referred urgently. My doctor did refer me but gave me a choose and book appointment, and I had to wait nearly four weeks for an appointment as she still didnt see me as urgent. I wont bore you all with the details, but between being seen, having core biopsy and FNA going back for the results, and then being told I would need surgery as the results were inconclusive, and then waiting for the histology after the lump was removed it was 10 weeks! In all that time I was petrafied it was BC even though 9 out of ten lumps are benign, and even though the doctor at the hospital said althought it was inconclusive, and he felt it should come out to be on the safe side, he said he felt it would turn out to be benign. Luckily it was. But due to other facts on mums side it was decided I should have a family history mammogram yearly.

The last two years I have had the mammograms and everything has been fine. I had one this year on the 15th Feb and on the 26th of feb I got the dreaded letter asking me to come back for more tests. I felt sick to my stomach, and was asked to go back on the 1st of March. Unlike last time, the doctors would not give me any reassurances, but said it looked very much like DCIS a very large area of it. I had a prone biopsy and was diagnosed with DCIS on 10th March, the day before the Japanese Earthquake. Now this is the thing. In between the diagnosis, we had a family christening which I went along too. And I was fine, not really worried, even though deep down I knew I had Cancer. I was given my diagnosis, but also told they had seen another suspicious area, and I needed to have another mammogram, I felt sick with worry. I went back into see the doctor and was told not its a crease in the skin. I said wonderful, I am so happy etc etc. The nurse said, do you understand you still have cancer. I said yes I do but its ok, its DCIS etc. She said you seem to be taking it very well. I was told to go back to the clinic on the following Monday to discuss treatment plan etc. I was calm all over the weekend, felt a bit worried, but not terror or anything like that. I went back on the Monday and was given a surgery date on the 25th March for a lumpectomy. I was told that due to the fact that the DCIS covered a large area and was high grade there was a strong possibility there would be invasive cancer too. I left there thinking its cool, I can deal with it. I had friends coming over, ringing up, sending cards, flowers, chocolates, you name it, and you know what I actually felt a fraud, like I should not be getting all this treatment from them all.

I had the surgery and ended up quite poorly with a kidney infection which crossed the breast and the gasterenteritis. My breast “exploded” where the infection was and I was rushed to hospital in an ambulance as it was literally pumping out fluid and I could not stop being sick. I spent 24 hours in A & E in good spirits, feeling yukky but mentally ok. Anyway on the 13th April I went back for my results to be told I had invasive cancer and that I would now need to have the sentinel biopsy to see if the cancer had spread. I went home got on with stuff and generally wasn’t worried. I had the odd moment when I though what if, but on the whole I was fine. I again had friends and family giving me the most amazing support and saying how amazed they were at how I was coping, but I didn’t feel amazing, because I genuinely was not worried and felt certain I would be ok. I was told that they did not have clear Margins and because the DCIS was so extensive that a mastectomy was really the best option. I had my Sentinel Node Biopsy waited 10 days and the result was clear thank god and yes I jumped for joy and yes I was happy. But deep down I knew it would all be Ok. I have had the odd few moments of being scared but on the whole I have not been that worried at all. I had MRI scan and will get the results on th 31st May, again I feel confident it will all be ok. I know that a mastectomy is very very likely to be the outcome, and I am even strongly considering a bilateral so as not to risk this damn disease coming back.

Now, I am the biggest worrier ever, I worry about silly things, and I would have bet a million pounds beforehand that if I was told I would get Cancer, I would be distraught and not be able to deal with it, but I am not. I am coping, I worry a bit but on the whole I am calm and think I will be ok.

My main worry has been that my children would be affected and that there exams would suffer. My daughter is at Uni and son doing his alevels.

Am I in denial, am I going to crash and burn and it will hit me one day.

Sorry about the long post, but after reading on here the normal way that people seem to be dealing with it, and the way I would have bet a million pounds I would be dealing with it, I wonder what the hell is wrong with me. I wonder if it denial and one day it will hit me like a train.

Thanks for reading this.

SGL

hello sgl
all I can say is that there are no rules about how we deal with it, either at the time or later on. I hope you continue to feel OK
xxx

Thanks, I am really questioning, my sanity here!

If you knew what a worrier I am, god I worry about everything generally.

xx

I’m still waiting for it to ‘hit me’. I was dx back in October, had mx in Nov, chemo started Dec, and now I just have two rads sessions and five years of tamoxifen… but I’m sure it will hit me soon…lmao… somehow don’t think it’s going to sink in any further!

What you’re feeling is perfectly normal - and takes me back to October when I posted something pretty similar…am I normal cos I’m not in floods/panicking etc etc. I was reassured by others then, and I hope I can do the same for you now.

It’s rubbish that it’s happening, but it is, and we just have to get on with it - sounds like your brain has decided that this is just not the right thing to panic about… because you need to be able to cope. Now, go panic about where you left the car keys instead…

Big hugs

Sophie xx

Thank you so much triphazard you have no idea how much I appreciate your post, I have really really been questioning my sanity the last few days after reading everyone elses posts.

Up until now I decided that being on here would probably worry me beyond all doubt like last time when I literally lived on here!! lol So its only coming on and using it regularly now since I got the all clear on my SNB that I have been seeing and reading what most others are feeling, hence my very very long post as I wanted to get it all down in writing and even reading it back now does show me I do accept I have BC, but as you say maybe being like this is my way of coping.

I don’t think I will get better I KNOW I am going to get better. I have seen my mum doing so well, shes three years down the line and also I made tons and tons of friends on here last time around and we are all on facebook and we all support each other and cyberly hold each others hands before appointments, test resuts etc. and it really really does help. I feel like I have cyber breast cancer sisters, probably sounds odd, but there support has been amazing. I must add that most of these ladies are doing extremely well, sadly we have a lost a few which has been heartbreaking as we all feel like one big family

I am so glad that you are coping well, and really hope you continue to do so and thank so much for your post, its put a great big smile on my face.

Big hugs back

SGL x

You’re not odd at all!

My Mum died from Bowel Cancer 3 years ago, I’m 34, I’ve been through some horrendous things, including before diagnosis, going through a miscarriage after 4 years of trying to concieve and then a year of fertility treatments/trails on the NHS, then to get a BC diagnosis.

If anyone would have told me I’d have been diagnosed with cancer and coped with it I’d have to them to eff off because despite being a “coper” but also a MAJOR worrier/control freak, I thought I’d have been *devastated* by this horrible blow after everything else I’ve been through in my life.

However, I’ve “got on with it” quite well. I won’t say I’m not worried about a return of it though, because I feel I have the strength to cope with it once… I really don’t want to have to deal with it again - ever.

I thought I was in denial as everyone around me was weeping/wailing and I only had 1 breadkdown about it all when I was waiting for results to see if it’d spread and it took them nearly 3 weeks and it was torture not knowing.

I’m due for my 3rd session of chemo on the 1st and just looking ahead to this all being over with and getting on with life, finding a job etc.

So you’ve surprised yourself. Perhaps like me, it was the not knowing, once you know where you’re at somehow survival kicks in.

Don’t worry you’re mad or odd or whatever.

We humans have amazing sometimes untapped abilities to deal against some shocking odds.

xxxx

Hi Stargazerlily,

I was a bit shocked when first diagnosed - and again after WLE and SNB when told would need FecT chemo as although stage one and no nodes affected it was grade 3 and there was vascular invasion.
I’ve just finished rads after chemo and having gap in the middle to have my appendix out. Basically I’ve accepted that much as I would prefer otherwise, that is how it is and I just have to get on with the treatment and make the best of good days - plenty of those now - not so many during chemo.
I’ve put off starting my Arimidex (actually the generic version) though. I’ve had the tablets since Thursday and am going to take the first one tomorrow hoping for minimal SEs.

So basically I’m saying we all cope differently and it’s OK to feel whatever you feel. I had the odd wobble - usually when I didn’t know what was going on and chemo got messed around after the appendix problems.
You still share all the problems of SEs etc and people saying things like “only 3 more chemos” when you feel c**p and can’t face the thought of one more.

Good luck. Stella xx

SGL, you’re no odder than almost all of us. I had “this doesn’t feel real” for ages and ages, and apart from climbing the walls waiting for results, I haven’t fallen to pieces, and don’t think I’m likely to either, not at this stage.

You’re just doing what has to be done, which is to get through all of this, and you will. Falling to bits is not inevitable. We are women, we are strong. Well, most of the time…

Hugs from another “sister”.

CM
x

Thank you ladies for your supportive replies, its nice to know I am not going bonkers lol

El Katrano, I am sorry to hear you have had such a terrible time, but I do think maybe once you have had lots of other things, in the end a coping system jumps into place. I really hope someone up there gives you a break.

Since my mum was diagnosed in 2008, my husband the following year collapsed on a motorway with a ruptured ulcer that perforated his bowell, he was rushed to hospital and had life saving surgery, but it was touch and go. The following year, my mum ended up in hospital having a hip operation and ended up getting a terrible infection, spent a whole month in hospital and ended up having to have a six pints during a blood transfusion. My daughter and son, both have ended up having OCD and have both been under the mental health service, but both are doing well. While this has been going on, I have had six operations since last February, one for my knee which actually needs to be replaced and I am only just 47! I then went into hospital for bowel surgery which went wrong as I ended up with a blockage and had to be kept in until they manage to sort that out. I also have a pelvic floor that has collapsed and my bladder and bowel are both prolapsed. I then started bleeding from my bowel and they could not find the reason, and I had to have two colonoscopies (the first one they did not take biopsies) The bleeding was like a period, but they could not find a reason for it. (I am under St Thomas in London as I have a bleeding disorder, but so far they cant find out what it is). The bowel surgery and blockage has given me problems with my bowel in that I have to rush to the loo and that in itself is very distressing. I am certain the hospital damaged my bowel as it was fine before the surgery. I am under St Marks the bowel specialist unit in North london. I then went on to have a hysterectomy in November due to the fact I had huge fibroids, which they think have caused the prolapses! During surgery, I had yet another bleed and have to have more blood! My knee has deteriated recently so literally days before my cancer diagnosis, I was given another MRI and I am now due for major surgery to break the knee, pin and reset it! If I was older I would get a new knew knee, but he wants to try this first as new knes have a life span of ten years. Then I get cancer!! Two operations so far for this. It sounds totally unbelievable, but there you go. One of my friends kindly told me that I had had all these other problems, to get me ready to cope for BC!!! lol

So yes maybe I am all worried hospitaled out who knows lol

dancing girl and choccie big hugs and thank you so much for your nice replies.

Hugs to all of you. xxxx

Hi SGL
I feel so much like you. I panicked at first, was on the way towards a double mastectomy because I’ve got bilateral lobular, but then when I got the clear nodes result from my SNB I thought, woooow, too drastic. So I am going against docs recommendation and have had bilateral WLE and am in the middle of 4 weeks of rads.
But then I keep having ‘small’ moments of panic when I think, am I in denial, what the hell, I am one of the biggest hypochondriacs, so how come I am still functioning. The word ‘oncology’ used to freak me out, and my biggest worry was getting dementia at 85 like most of my family.
I am on low-dose antianxiety to help me sleep, and am wondering if its these that are keeping the reality of it all at bay. Like you my family, who know my ways, are all wondering how the hell I’m holding it together. But there you go… I’ve read loads and am hoping that the newer research which says that what I’ve got doesn’t always need drastic surgery. I wonder though if I’m just sleepwalking into years of worry.
So sorry to hear about all the stuff you’ve gone through. But great to hear of someone else who worries about being in denial.
S

Hi shell

Lovely to hear from you, you sound very alike me. I think maybe we have just had so much to cope with in the past we are all worried out. After having the lovely replies on here and hearing that alot of people feel the same as me, I don’t feel odd anymore, which is nice, just lucky that I am coping so well and glad that I am going to get better, because 9 out of 10 people recover from cancer, and I am damn well going to be one of those nine!!

I hope you continue to keep sane and well.

I think you are being so brave going with what you want, rather than what you are advised, I am too much of a coward to do anything, but what I am told. Good luck hun.

Ps I see you are a dog lover too, he’s very cute!

xx

Hi Stargazerlily, No you are not odd. Very very normal. And it is great that you can write down all that has happened to you and share it with us.
Your story took me back to 1999.
In the January my Mother in law, collapsed and died very suddenly.
In the May my Father in law died in hospital. He had recovered well from a stroke and was waiting to go home. Unfortunately he contacted MRSA. We had to drive home from Italy to attend the funeral.
In the August his sister died. We went to the funeral near London. There were only 5 of us her funeral. She was 15 years older than my FIL.
In between all this I was having lots of tests which I thought was to do with my IBS. However all results were ok and it came back that my BC had spread to my bones. That for me was the year from Hell.
My husband suffers from Bi-polar Disorder and that year he became really unwell which led to early retirement for both of us.
Now all these years later life is good again. It hasn’t been a bed of roses but it has never been as bad as 1999 either. I would say I have become a little stronger as each thing was thrown at me.
Thank you so much for sharing the details of your “story” . I hope things improve for you and that you live a long and happy life. I certainly have. It is over 22 years since my first diagnosis. A huge hug from me to you. Val

OMG Val, I actually have tears in my eyes reading your story. You and your poor hubby have been through so much, my heart goes out to you. I pray that things now continue to go well for you and your poor hubby, why do some people have to put up with so much, its just so wrong.

Sending huge postive hugs in your direction.

XX

Hi Stargazerlily, I didn’t mean to make you cry! I didn’t want any sympathy really but thank you anyway. But just wanted to show that “sh*t” happens yet it is amazing what we can deal with and yet come through the other end in one piece.
There was another year that was equally bad but this story is meant to make you smile. I only have a small family. No brothers and sisters. Yet within our small family there were so many bad things going on to other members of the family… loss of jobs, illnesses, mental health, breakdowns, panic attacks,bridging loans etc etc. I took everyone’s problems on board but because there were just so many people to worry about I found that I could put ALL of it on the back burner, because I couldn’t worry about ALL of them. I remember saying to my husband “Gosh having BC is a doddle after listening to everyone else’s problems”.
Just take one day at a time. Enjoy the good days. Hide under the duvet on the bad ones. Much love, val

Awww, I know you didn’t mean to make me cry, but my heart just went out to your poor family as you have been through so damn much.

You did make me chuckle to at the end of this post, so thank you for that too.

Keep smiling and enjoy the sunshine (if you have any at the moment in Scotland lol)

SGL xxx