4 years and coping with instability and reoccurance

[RosieH]

Hi ladies

still struggling after a scare this week and trying to get on top of this anxiety. 

I think it was Winston Churchill that described his depression like a black dog hanging on the back of him all the time, following him everywhere getting in the way of things and I’m thinking this worry has become my black dog.

Just want to shake the bloody thing off.

Poppy loosing your brother like that must be bloody hard and I’m so sorry.

People say to me oh god you look so well and I want to shout look at the photos of me on holiday a month before diagnosis!!! I looked bloody well then and wasn’t.

There must be a way forward to rationalise this and move on!?

[Poppy3]

Hello Ladies, I am also 5 years since my diagnosis next month. I thought I would be singing from the roof tops but I'm not. I am trying so hard not to think about it coming back, but there always seems like there is something to worry about. I am currently waiting for the results of a bone scan which seem to be taking ages. All the hospital is telling me is, it's with the investigate team, what does that mean?? I also have my annual check up in July where I can decide if I want to continue another 5 years on tamoxifen. My decision, so no idea what to do. It scares me to stay on it and scares me to come off it! On top of that I lost my brother aged 49 last year to Cancer and a friend in March. My head just feels like it's going to explode with everything swimming around in it! Before my brother passed I think I was coping relatively well. But these last 6 months it's all I can think about the 'what if's' I try to give myself a good talking to telling myself 'worry when there is something to worry about' but you can't help it.The only thing that helps is this forum where you see others feeling the same and at least you know you're not going totally mad! I also agree that no-one else knows what its like and get fed up of people telling me to 'keep my chin up' usually from someone who cant cope with a cold! Thank you for reading. Lots of love to all you lovely ladies, ..xxx

[mairead]

Hello

Im eleven years on (almost to day) from my initial diagnosis. I too made friends along the way who had reoccurrence and each time it happens you feel like your just waiting your turn. 

I still get panicky now, this year I’ve had three very big scares and all have turned out to be nothing. It does ease with time, I was extremely paranoid for the first few years but it’s got so much better- but for me at least it’ll never go away and unless someone has had cancer themselves they will never understand -  that’s what I say to people who Like to tell me that I could get hit by a bus tomorrow 🤬.

Lots of love x

[oldspice60]

Hi Rosie, I am 5 years from dx and still get the heebie-jeebies from time to time so I know where you are coming from. I have had a few scary times about things which I feared was a recurrence and I have lymphodema on my chest near the op site which is a bit unsightly. However it is the Tamoxifen side effects which have really broken me. I have gained weight, have hot flushes and stiff joints, thinning hair, no eyebrows (I have them microbladed) and nasty brown patches and spots all over my face! I can't say if any of these things have improved and sometimes I wish it had never happened to me as I really struggle with the 'new normal'. I have my annual mammogram tomorrow and whilst I am not looking forward to having my boobs squeezed between 2 plates it is the agonising wait for the results which I find hard to cope with. The anxiety every year is such an intrusion and I spend 2 weeks putting my life on hold with all the what ifs... 😕😩

[RosieH]

Hi ladies...haven’t used the forum since the end of treatment last year but have been struggling so much lately I needed to log on for a virtual hug and maybe a bit of a kick up the bum. Just got back from a lovely Caribbean holiday and lucky for me my second since the end of treatment. However unlike the first this time as soon as I started to wind down from life and relax I started to go through all those hideous anxieties again. Was I breathless? Was it a lump under my arm (I had a double mx so no boobs to obsess over) Is the pain in my shoulder bone mets? Oh no dodgy holiday tummy it must have gone to my bowels...literally thought after thought just like the very early days post tx. Also no mamo as no real boobs so how will I know if it’s crept back somewhere. Last night I had a nightmare that I had Lymphedema that had spread to my eyes!!....you probably get my drift. I hate that this illness came into my life and took my boobs, my nipples, my ability to sleep with my husband without lube (sorry for that bit but argh) made my hair a curly nightmare that I can’t dry because half way through I’m dripping with sweat....I’m hoping as the years pass these melt downs get less????

[oldspice60]

Hi again. I am actually from Barry but work in Cardiff. I have tried to stay the same as I was before DX as much as possible because I don't want BC to define me. I haven't had a big epiphany and turned vegan and teetotal nor joined expensive gyms or anything, besides which I can't afford to! I just get annoyed and p*ssed off that I have been forced into a new normal with the legacy of something that never goes away and interferes in my life so much. I am not looking forward to my mammo and the agonising wait for results but I am trying to cope best as I can xx

[Rockstarchic]

I’m I’m Michelle as well rockstarchic came about  before diagnosis quiet as a mouse since bit of a party animal a night out I’m there . I have tbh though this year I have been a scaredy cat it’s 5 years since diagnosis since April I’ve been so worried about it coming back . What area of Cardiff are you from by the way xx

[oldspice60]

Hi Rockstar chic (great name by the way) Yes this is certainly how I am thinking which is 'it is just a date' and that is that. It also gives me some time to indulge in some Ursula Le Guin and Rosemary Sutcliffe! Sending you hugs Michele x

[Rockstarchic]

I know how you feel my first mammogram was same day as diagnosis . Although I am lucky the BCN at RCT have always been accommodating and second one was going to Florida at Easter and they did mammogram same day results . It’s going to be fine just tell yourself it’s just a date good luck xx

[oldspice60]

Hi. I have only had 3 mammograms as the first follow up was late due to a botch up by the hospital, so instead of going in June 2015 I went in December 2015. I had my next one's in Dec 16 and 17  but I was told at that one I would now get my screenings every 18 months as this is the policy of Cardiff and Vale Health Authority. So here I am back in June  where I started. I am bricking it mainly because of the milestone  but also as I do things in my life such as drink alcohol which I fear may cause a recurrence. I have found that the anxiety has actually gotten worse the further I have gone from DX not better 😢

[Rockstarchic]

Hi I’m the same as you diagnosed April 2014 and live in Wales I’ve had my last yearly mammogram in January how come you have only had three . I understand your fear of mammogram I live in fear to every ache pain in my head it’s back . 

[oldspice60]

Hi everyone. I had my letter yesterday inviting me for my mammo on 5th June. It is only my 3rd one even though I am almost 5 years out from treatment  (it works differently in Wales to other UK regions). It is ironically on the date I was actually diagnosed back in 2014 which feels a bit fatalistic TBH. I think it is normal to feel wobbly and have 'scanxiety' and right now I have it in spades but I am trying to adopt a technique which I picked up from mindfulness when I get these panic attacks which is to say to myself that 'it is just a thought' and it seems to work. I also find keeping busy and occupying the mind helps a lot. I work full time so don't have much time to stop and worry anyway but in my spare time I get lost in a good book or go for long walks. Sending you hugs Michele x

[lilkim]

I m so glad i m not the only one feeling like this.... i m so worried about not taking my tamoxifen. I too am on my 4th yr and totally understand the way yo feel when you see the adverts on tv or hear of a friend being diagnosed. I thought i was a bit of a wimp having all these emotions as i should just be grateful i m still here today. At least i know now my feelings are normal thank you xxx and i m glad your brother has such amazing support too xxc

[Suziex]

I totally understand where you are all coming from. I have just posted on Ask the Nurses. I am 9 years down the line and at the moment I feel I am going through a bad time. I can't get it out of my head is it time now that it will come back. Think I'm going to call the help line and have a chat with the Nurses. I hope I will feel better after having a chat x

[airyfairy]

I sympathise - I am mostly ok, but have my 2nd mammogram coming up. I hate it most to smile and say "I am fine", but I do to avoid any silly remarks that I know I would have if I said I was not - some people might be genuinely worried for you, though and cover it up a bit clumsily.

[rosietd]

With you 100% on this. I have my first annual mammograms next week and I am petrified. Saw the oncologist this week, who told me not to worry about it, but that’s pretty impossible from where I’m standing!

xxx

[Poppy3]

Hi. I can also relate to how you are feeling. I have just passed 4 years on 19 May. I have my annual check up next week and I am dreading her saying that I only have 1 year of tamoxifen left. I find this funny, that I spent the first two years wanting to stop taking it and not I'm panicking I won't be able to!! I think it does get easier...I can usually tell how I'm feeling by the amount of times I have posted on here! I also agree that you can be having a good day, then the tv shows an ad or a storyline in one of the soaps and it brings it all back. I am currently trying to support by brother who also has cancer. It is incredibly difficult to be brave all of the time.Everything he says I can relate to and takes me right back to the room where I was told. My motto now is have No Regrets. Everything you would like to do/try make the effort to do. I know that's easier said than done sometimes with side effects of medication. For me I don't won't to look back and wish I done things that I never got round to doing. It's always good to know you're not alone when you visit this site. Lots of love to all you lovely ladies..xxx

[Rockstarchic]

I can sympathize with you I am 4 years on diagnosed April 14 age 51 I feel bit cheated as my mammogram call didn’t come through at age 50 I received 2 months after being diagnosed . If I had had mammogram my breast cancer would not have as been invasive as it was . I can’t change that now . My life has been so fulfilled I have met most amazing group of friends who have had breast cancer we have all had our little scares along the way we fundraise we are arranging our second Ball I still do have wobbles but I make sure I make life count embrace it . I am hopefully on last journey of operations I’m having my good boob uplifted and then 3D tattoo on recon boob this I hope helps put in to perspective . Xx

[Jobey68]

I think most of us can relate at sometime or another, I'm pretty ok most of the time but I'm coming up to my 3rd year mammo and am beginning to feel a little fed up with it all now, Its my 50th next month and I'm delighted to be here to celebrate it but could do without waiting on results in the lead up to be honest! 

I also know people having reacurrances and secondaries which doesn't help but we have to try and appreciate that we are doing ok and there will always be these things happening around us Xx Jo 

[Moijan]

Yes, I can certainly relate to it...especially to ‘buses’ scenario. Bc seems to shatter our confidence in life itself...I’m so sorry you are feeling that way....

why not not pop into the ‘need a hug, or kick up the backside ‘ thread? Lots of lovely ladies feeling pretty much like you,

xxxhugs, Moijanxx

actually you said ‘car’ but I keep being told ‘anyone of us could go under a bus’ which is a similar theme....many people just don’t know what to say, or, when to keep their mouths shut!

[taveyoreo78]

recently two of my friends have been re-diagnosed with cancer again. I feel this has caused me great instability and fear for myself. I am tired of people thinking its 4 years now you must be OK,

I don't feel like that, I feel more afraid this year because of that. Its also my 40 birthday and I feel concerned as to whether I will reach that stage of my life. It's hard because people just don't understand that fear and uncertainity and it doesn't help with insensitve responses like 'well you could get hit by a car' which I don't find very helpful with managing that fear.

Please can anyone else relate to this?