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Feeling so low

Whitfield
Member

Re: Feeling so low

We are not to be blamed as none of us brought this ticket to our knowledge.  We are all struggling through and doing what we can to remain sane.  We will have up days and down days and life will never be the same but we have to hope for our love ones who want us to stay here and strong.

 

personally, I had few people to talk this throug with as sister and mum out heads in sand and said do treatment and you will be fine.  Husband tried his best but as he lost his dad to cancer he found it hard what with working and trying to keep me going with 8 chemos, two hospitalisation, surgery and the. 20 rads sessions.  No o new knows what the future hold so we have to go with the professionals and hope we can make it.  I had some counselling which helped.  My heart breaks when I read other lovely ladies are having to go through this but we have no choice.  This time it WAS ME 😢 But I will try to get a life back now.

 

sending love and hugs.

 

Pam x

Ali-B
Member

Re: Feeling so low

Oh Blossom - it wasn't you! I just feel so scared, like I'll be looking over my shoulder for the rest of my life. I feel for you too - the uncertainty, desperate to move forward and to have this evil thing removed from your body. I totally get that. FWIW when I mentioned a DMX to my consultant (on the NHS) they also said I would have to go for some kind of 'psycho-evalutation' and as for the scan - I think it's double checking and perhaps is a good thing. I have moments myself when I am totally positive but then I get scared and become the most pessimistic. I just don't want to be here and still, somewhere in my crazy mind, think that I somehow brought this on myself - how daft is that, I don't smoke, drink and I exercise regularly (although since diagnosis it's dropped off) - but still, somehow I blame myself. *Grrrrr* indeed.

 

Ali xxx

Blossom Hill
Member

Re: Feeling so low

Hi Ali, Im So So sorry, I didn't mean to frighten you with my earlier message to Suzie, I can't apologise enough. I've also got two neighbours who had their lumps removed radiotherapy, and 5 and 3 years on they are still taking the pills have their yearly screening and they are fine. I want a DMX because I'have to have an operation on my uneffected breast to bring it in line with the effected one, so to my mind get rid, but this isn't for everyone, I'm unlucky enough to have my opinion tainted by BRACA 2 gene, which although I don't have, my ex husbands family have it throughout, they were one of the first family groups to pioneer the BRACA  gene testing 20 years ago. BUT as I wait to have a CT scan or even a sodding appointment for one, having been seven weeks diagnosed and apart from the bloody wonder drug Leterzole (Yawn) I have yet to have mine dealt with and I now wait for CT scan to confirm that the bloody thing hasn't taken up residence somewhere else, I have to believe that what I've been told is right, and that its to check before I insist on such radical surgery and also its standard practise for DIEP reconstruction, but deep down I no they are checking its nowhere else, as if it is the DMX would pointless, however thev'e said the mass is small and my lymph nodes look normal (ha whats normal in life anymore???) so I'm holding on to that thought, and hoping that theve decided on the CT scan as a precaution as I'm arguing for such drastic and in the consultants opionion not needed surgery. But I'm the one left to live my life, whilst it may be wrong for someone else its the right decision for me. I've just gotta convince the sodding ( blimey I swear a lot these days!!!) consultant that we are individuals and one soloution does not fit all, I think they tailor the treatment to the severity and stage of the cancer not to the patient, somewhwere there has to be some middle ground to satisfy both. If one more person tells me to stay positive, Well, I'm gonna go for them, and I'm a very patient avoid confrontation at all costs person, my hairdresser (a lovely lady) told me today, you look so well!!!!!!!!!!!!!!!!!!!!! GRRRRRRRRRRRRRRRRRR, well seing as I've had no treatment and still got no symptoms, what do they expect??? And we get up shower put on the makeup and go about our normal daily routines and lives and everythings the same, except everythings different and trying to marry up the two drives us all insane with the second voice in our brains that NEVER leaves us. So lovely lady HOLD ON IN THERE, one hour at a time if a day is too much. Me? I'm still working, people say I can't believe your still going to work, I'd be on the floor, I just tell them none of us knows how we would deal with it until we sadly get told, guess what? ITS YOU. I work for a bank, I get moaned at every day about queing, I think, "You want sommat to moan about?????" Well I wish all I had to moan about was queing!!!! But I smile and ask them if I can help avoid their wait by seing them at a desk, all the time my eye on my muted phone in case the hospital ring me or the care home where my mum with dementia is, its bonkers, and one day I'm going to ask a grumpy miserable upstart customer if they wanna swop places, except of course they can't.. Wine, wine gets me through, no I don't get drunk, but at the moment its my safety valve, I have no siblings, no family other than my mum with Dementia, I have my own four children, but they are terrified too, I'm the solve all the problems, not create them!!! My poor husband of 5 years, he has been amazing, we all try to make light of it whilst hoping for the best and fearing its worse, but then the ups and downs are part of the remit, I told my husband I felt like I was getting on a roller coaster and did't know what the ride was, ha how true what I said. So tomorrows another day, and somebody else will be newly diagnosed and just as terrified as us, and just starting out their journey like we were, and we will have to tell them its O.K., So you just hang on in there lovely, one small step at a time, and if you want to feel negative, well you've bloody earned it just like the rest of these amazing lovely people on this site, were allowed to be frightened, scared and yes even negative. But eventually we pick ourselves up even if we dont want to, and positivity returns. I'm learning fast about all this, we all are. So you be crappy if you want, cos its allowed, and tomorrow your be there for someone else having a bad time. We all do our best, its all we can do. Sending good thoughts

Love BlossomHill XXX

Jobey68
Member

Re: Feeling so low

The fear does subside with time Ali, it's all part of this crappy process but things do get easier and Cancer will stop taking over your every thought, I'm almost a year on now and I won't deny there are still a few times I have what the hell happened to me moments but on the whole life is good and I get on and enjoy it! Xx 

Jill1998
Community Champion

Re: Feeling so low

Hi Ali,I think we all have times when the enormity of this hits you and you panic about "what ifs ".try and focus on the fact that the vast majority of us will survive this and there is progress being made all the time in the treatment and management of breast cancer,we have just got to do out best to not let it spoil our lives and try to our put the fear to the back of our minds as best we can .Jill
Patricia11
Member

Re: Feeling so low

Hi Please dont take any notice of what the breast surgeons and BC nurses say until you have had the lump removed and the pathology report is available to confirm the details of the cancer and whether any spread to the nodes.

 

When i had lumpectomy and re-exision i was told i was expected to be free of cancer and six weeks passed when i was called up and asked to come into see the breast surgeon that day.

 

I was not anticipating any bad news given what i had been told so i thought my life was over when i was told what was actually found was 2 tumours and 34/36 nodes positive for cancer.

 

I was very upset that i waited so long thinking i was cancer free and was now unexpectedly facing a mx and a uncertain future.

 

I am happy to say my scans were clear and i have just completed treatment and feel very well.   I have to have herceptin for another 7 months and i am taking bone strengthening tablets try to stop the cancer coming back.  

Ali-B
Member

Re: Feeling so low

Evening All,

 

Looks like it's my turn to lose my sh** about this BC stuff. Tonight it's about it coming back, I am terrified that it won't respond to treatment and I will be the 'bad' statistic. Why did this have to happen to me *sob*. How can I keep up the positivity? What if ........ 😞 This still feels like a bad dream.

Sorry for being all crappy.

 

Ali xx

Blossom Hill
Member

Re: Feeling so low

Hi Kim, thanks for vote of sanity, I replied to Suzy B, think you get the gist of how I'm feeling, if it has spread I'm always gonna think its becasue I've been made to wait by the doctors cos I've dared voice what I want and not what they think, Hope you continue to stay healthy

BlossomHill XXXX

Blossom Hill
Member

Re: Feeling so low

Hi Suzy, thanks for reply, thats the point they don't think I need Chemo, well they didn't 6 weeks ago, they want the CT scan as I want a DMX, to see I suppose if its gone to my bones brain or lungs, at which point I suppose they wont do the DMX cos whats the point!!!! But what I don't understand is if they think that why are they telling me its small I'm safe blah blah blah!¬!!!! she wants me to see a nutty doctor!!!!!!!!!!! My family of 4 children, all grown up married bar 1, she has a boyfriend of 5 years, all think its highly amusing, maybe I should book myself a room in the care home next to my lovely mum who has dementia!!!. She wants to know if my heads in the right place to make just a drastic decision, um let me think about it, shall I give myself the best chance of this cancer not being able to return to my breasts (No guarentee) or syhall I risk an operation a boob reduction at the same time as I'm large breasted HH cup it gives me a better chance in Radiotherapy, 3 weeks of radiotherapy, chemo, well who knows???? and 6 months after its all done, I go back in and have the other breast made samed size, then I sit back and wait for years for the bloody thing to come back, if its in the radiated breast, arh well we have to remove that, but ghey I can have reconstructionm, if its in the other, well thats ok cos they can operate, arh except thats then not the same as the other, So cos I want them both gone and reconstructed at same time, like nearly everyone on here has had to have done, they would have had them both if they had been given a chance, I have to go see nutty doctor to see if I'm of sound mind!!!!! Its the bloody doctors that need the nut house,!!!!! And us poor people that ewnd up there cos its their agenga and not the patients wishes. I should add that I have a daughter with the BRAC2 gene, inheirited from her father, she is 21, I've sat through all her counselling, gine with her through her testing, spoken to her surgeons, she will have douyble MX in approx 10 yrs time, her choice, I've watched my 5 sisters in law go through breast cancer for the last 20 years, 2 or not BRAC2 positive, theve had the lumps then the treatment then its returned, 2 without the gene found lumps and had DMX anyway, my surgeon knows all this. I'm a sane, well I was 58 year old woman I work full time run my home, like the rest of us, walk my two dogs two miles a day and run around after my various grown up chlidren, my husband is in agreement, he well he is an armed police officer, so one assumes he must be sane. I will wait for my nutty doctor assessment, but if she want me to have any more sessions I'm OUTTA there. Beam me up Scotty. Cos she is sending me round the bend. I'm off to get a glass of wine, currently making shepards pie for tea monday and chicken enchiladas for tuesday, luckily my family havent had to hide the knives from me YET!!!

Gratefull thanks as always to you all

BlossonHill

SuzyEB
Member

Re: Feeling so low

Hi, I am just visiting from Sept 2015 chemo thread. I had a CT and a bone scan prior to my chemo. The CT only takes a few minutes to do but it csn take about 1.5 hours to prepare for it. Some places give you a drink of horrible stuff to drink. This is to coat your bowel so it shows up what is lymph nodes or bowel. You also have a cannula and an injection during the scan. This is an Iodine solution which shows up the blood vessels. The injection makes you feel hot and also you feel like you're wetting yourself. I promise you it is just a sensation. You will be asked to breathe in and hold your breath during the scan. It is only for approx 10-15 seconds. The Radiologist will report the scan in the days after it is done. After the scan is finished yoi get dressed and the cannula us removed. It is a good idea to drink plenty of water before and especially after the scan. Please don't worry about the scan. It doesn't take long. You have had a rough time so far snd I hope it improves soon. Will be thinking about you this week. Take care. Suz xx
Kim555pink
Member

Re: Feeling so low

I can totally undersatand that this is driving you mad, it would be me too as I know that my head was all over the place while I was waiting for test results etc,etc.  I would be like you, have a double masectomy and be done with it all.  Having just had a single masectomy knowing that has removed my tumour (s) completely from my breast and had some lymph nodes removed that were cancerous too, I'm happy (!) that I've had the best possible care and treatment (Chemo starts tomorrow after that radiotherapy and hormone tablets) But I'm not you, we cope with things differently and how you think and feel are important.

I wonder if they have decided to do this scan because they think that you think is is worse than they think it is? (I'm sure I could have put that better!) Don't be worried about seeing a counsellor or psychologist/psychiatrist, they are just covering all bases I guess to ensure your best possible care.

I hope this has helped? Sending you lots of love and I hope a decision is made quickly and you can get a start on it all. xxx

Blossom Hill
Member

Re: Feeling so low

Hi to all you lovely ladies. Thank you for your replies. I 've gotta have a CT scan, I'm sure its part of the process, somewhere. But since I've been seing my surgeon its always been the same, this tumor is small (well it was 7 weeks ago!!!) she said she is not expecting it to have spread to my lymph nodes and under ultrasound they look normal, although I no that until the results are in we don't no, she is not expecting me to need chemo, that I have time due to the drug she has put me on Leterzole and that my cancer is so small that I can have the luxury (ha my heads gone mad in 7 weeks) to make sure I choose the right surgery, I have thought till I've gone insane but I always come back to same decision, double MX and reconstruction. So having got a phone call Friday night from BC nurse to say that following their MDT meeting it had been decided a CT scan needed to be done, I'm thinking WHAT!!!!! I asked them yesterday WHY, why after seing her 3 times since 1st December had a CT scan never been mentioned?, she said that it had been decided that since I want such drastic surgery (a DMX), they had decided to check that there was nothing else going on elsewhwere else!!!!. So how can I go from 6mm cancer its not even gone to your Lymph nodes to er actually we have better check before we do this radical surgery that its nowhere else in my body, which I DO NO makes sense, and I don't even want to think about it if it has, so if I wasn't insisting on the radical surgery they wouldn't be checking it hadn't spread? I know I have to have a CT scan prior to DIEP reconstruction to check blood vessels and bone mapping etc, but whislt theve said they are going to do that as well, the primary reason for the CT scan is to check it hasn't spread, and she wants me to be assessed before the surgery to see if I'm in the right place to make such a radical decision!!!! They are doing there level best to make sure I'm not. I'm wondering if its me going mad. Anyway what can I do, waiting for the CT scan appointment for this week, got the plastic surgeon thurs (that might be a waste of time if the CT scan throws up another site) but hey ho, think positive, then the nutty doctor assessment after plastic surgeon, THEN seing her again on the 26th when I suppose I will get the CT scan results IF they are showing no further sites, (please keep everything crossed for me) then maybe I will have a date for surgery. by which time I would have had my diagnosis for two months, two months with living with the knowledge and sod all happening!!!! Think people are starting to wonder if I'm making it up!!!! Anyone had a CT scan????? What to expect????

Whitfield
Member

Re: Feeling so low

Try to stay positive and remember these doctors are trying to save us.  You can get a second opinion but I would press for the scans ASAP.  

 

Like me you I wanted a DX but my hospital said the percentage different re reoccurrence between that a lump removal was very, very low hence this is why they go for lump removal first if possible.  Just because the. Feast is removed that does not guarantee it will not return.  Well that is what they said to me and I'm a D cup ha I g tumour size 33mm, TNBC with node involvement.

 

hope this info helps you but do remember we are here and there are other doctors if your worried about your treatment,

 

good luck.

 

Pam x

Blossom Hill
Member

Re: Feeling so low

Hi Whitfield, thank you for reply. Double MX my choice, yes drastic hence the nutty doctor review.. I'm going bloody NUTTY. !!! No i have other options, lumpectectomy boob reduction, I have HH cup, so possible heart problems following  radotherapy cos i've got HUGE boobs , so Ive decided on double MS and reconstruction. I'm going bloody potty, ur SOOOOOO right, private is not alwaz best option, My carefully choosen surgeon is more interested in her remit than mine???? TO scared I'm gonna sue her. So now after 2 months with breast cancer I get a phone call, I need a CT scan, erm after 1 month 16

days of seing her. I'm losing the will not to fight the disease but the bloody doctors that give us the diagnosis and p**s off (is that allowed on this site???) to live their lives and we have to get on with ours based on their esteemed decisions. Its all Bo""*$cks. So if u get my drift . Erm havetostart againtomorrow.com. but thanks for vote.

BlossonHill xxx

Blossom Hill
Member

Re: Feeling so low

Hi Whitfield, thank you for reply. Double MX my choice, yes drastic hence the nutty doctor review.. I'm going bloody NUTTY. !!! No i have other options, lumpectectomy boob reduction, I have HH cup, so possible heart problems following  radotherapy cos i've got HUGE boobs , so Ive decided on double MS and reconstruction. I'm going bloody potty, ur SOOOOOO right, private is not alwaz best option, My carefully choosen surgeon is more interested in her remit than mine???? TO scared I'm gonna sue her. So now after 2 months with breast cancer I get a phone call, I need a CT scan, erm after 1 month 16

days of seing her. I'm losing the will not to fight the disease but the bloody doctors that give us the diagnosis and piss off (is that allowed on this site???) to live their lives and we have to get on with ours based on their esteemed decisions. Its all Bo""*$cks. So if u get my drift . Erm havetostart againtomorrow.com. but thanks for vote.

BlossonHill xxx

Whitfield
Member

Re: Feeling so low

Blossom - sorry you are here.  I had bone scan and ct scan week after diagnosis.  Private is not always best so do question everything.  What is your diagnoses?  Double mx seems extreme if lump us not too big or BRAC gene positive.  We are here for you.

 

pam x

Blossom Hill
Member

Re: Feeling so low

Hi All to feeling so low. Ha my new name tonight is NAPOLEON!!!! Not BlossomHill, well I thought I was doing ok. feeling a bit guility cos everyone has got so much to deal with, and I thought the double MX would solve it for me. Small tumour not expecting it to have spread to your lymph nodes, not expecting you to have chemo BLAH BLAH usual BLAH, so I've gotta see a nutty doctor to see if I'M capable of making the decision based on the fact that I've got the cancer, to have a Double MX, bearing in mind I've had this diagnosis since the F***ing 25th November, so what do I get tonight, a phone call from the hospital saying theve have this MDF meeting (thought that was a artifical wood)!!! and following that I've got to have a CT scan to see if its spread to my lungs or bones!!!!!! So now not so small eah, whislt I appreciate all you lovely ladies out there have maybe had this and its NORMAL (nothing in my life is normal anymore), Ive been seing this P*XY surgeon, privately,cos my company pays for me to have private medical access, no I'm not posh or rich, I'm a small cog in a big wheel, a VERY small cog,I work full time and like the rest of us an empty ironing basket is one of lifes luxuries. Anyway I've been seing her since the 1st December, so now she decides following her wood meeting I've gotta have a CT scan,!!!! Why?, well to see if its spread to your lungs or bones, saz the nurse, I was having quite a good day prior to call, what they didn't think since 1st December they might need to check this????????? So now she wants me to have several sessions with the physologist to check that I'm ok to make the double MX decision. Who's nutty??? I've gone from small blah blah blah to it might have spread to your lungs or bones. Sorry to be so negative.com but I'm fed up with it all, like we all are from time to time. Thanks for being there

BlossomhIll XXX

Whitfield
Member

Re: Feeling so low

Hello Ali,  I'm feeling the same.  It's hard to think we can overcome when it's all we hear about with so many deaths.  Seems to me everyone is getting cancer.  That said we have to stay positive as being low and depressed is not the best way to fight this disease.  I'm thinking you have already changed me mentally, physically and I will try my best to not let you take more of me in terms of happiness.  If I only have so long left I must try to get the best out of it.  This is the mantra I'm trying to live by but I know it's very hard especially if you're mid way through treatment and fighting will all you have.

 

Sending love to all of us affected by this decease.

 

pam x

Ali-B
Member

Re: Feeling so low

Really getting depressed seeing all these news articles about people dying from cancer - I know cancer is a huge umbrella for many conditions - but it doesn't make for putting me in a positive mood.

 

I know these are all probably different cancers (well they are all men for starters!! 🙂 ) but still makes me feel uneasy.

 

Just saying!

 

BBFN 

 

Ali xxx

tat4tit
Member

Re: Feeling so low

Hi all.  I went to the pre-op appt on my own; it was only the questionnaire bit that my OH could have sat in on (for space reasons) at my hospital.  I also had the joy of visiting the medical photography department which was an unexpected bonus!  Even with that, I was in and out within half an hour.  You have to do what feels right for you, Ali.

 

Once we had the op date, OH and I went away for a long weekend (much better use of time off work!) in Devon.  Although it was November, we had some lovely weather and walked and walked along the coast and beaches and had a couple of meals out.  It was just the distraction I needed.  I think if I had been at home I would have felt very low, watching the clock and waiting for the axe to fall, so to speak.  If you can't get away, plan something nice to do 🙂  

 

The week of the op was about making preparations, packing my bag, getting up to date on housework (!) and a quick scream in the woods to let off steam when I walked the dog 😉  Keeping busy, even mindless things like cleaning, helps me deal with stress and allowing myself a few (I tried to keep it to just a few) minutes of panic, tears and anger as an outlet kept things in balance.  I hope you find a way to cope that works most of the time for you too.

 

Hugs to all, Tat xxx

Ali-B
Member

Re: Feeling so low

Hi Pam 🙂

I have had surgery before and the pre-op in the past is usually things like checking your height/weight./general health and taking swabs to check you for mrsa etc - so I was sort of thinking of doing that on my own ... but I'll take on board what you say xxx Ali
Whitfield
Member

Re: Feeling so low

Oh and take someone with yiur for the pre op assessment as you do need support as there is a lot to take in and as we know our minds are not fully focused during this time of major stress.

 

my next door neighbor has had an elected DX and she's fine.  Not even bothered with reconstruction so we are all different and our needs different.

 

pam x

Whitfield
Member

Re: Feeling so low

Sorry to hear your are both so stressed about your operations and the future.  Thing is cancer loves stress so do try to talk your feeling out with someone.  I know exactly how you feel,asking for double mx.  My hospital refused saying they do not remove healthy tissue and even if they did this would mean percentage wise it not coming back.  Stats say a lumptecomy equal same as full breast removal almost.  I think the difference is below 5 percent.

 

That said, it a choice we need to make based on our own diagnosis and our feelings.  I think if you have the BRAC gene 1 or 2 its defo worth having all breast tissue removed but I'm not a doctor.

 

I wish you well and hope you both get good outcomes and are happy with surgery.

 

Sending love.

 

Px

Ali-B
Member

Re: Feeling so low

Hello All and thanks for replying to this thread (as we do) 🙂

 

Deffo feeling a bit low this morning - lots of paperwork came through yesterday with appointments leading up to my surgery date of 28/1 - the pre-op one, the radiology one (for the tracer to be injected and following scan) and then the actual surgery one itself. It just hit me - I think it's because over the last couple of weeks life has got back to some-kind-of-normal and now all the anxieties have got stirred up again. This is how back to normal it got, my husband was wondering if he needed to attend with me for some of the earlier appointments (like the pre-op one) as there would be a lot of waiting around and wondered if he could just drop me off! Whilst in a pragmnatic frame of mind I get it, but in the reverting-to-child-like frame of mind I felt like I was just inconveniancing him. Of course he got it straight away when I did mention it but it just goes to show how our mind-set shifts around and plays tricks on us.

 

*sigh* 

 

How do we *do* this? 

 

BBFN

 

Ali xxx

 

PS: Blossom - I totally get the double mx thing - I am also considering it - maybe getting the other one 'done' after the dust has settled from this one (don't want to delay current treatment run if you know what I mean).

 

Blossom Hill
Member

Re: Feeling so low

Hi Ali-B

I feel same as you, my surgery was cancelled today, mainly as right from the very begining of my diagnosis I thought " I want a double Mastectomy", but its drastic and theve tried to talk me out of it, I've watched breast cancer for the last 20 years as 3 of my 4 sister in laws have fought it, I thought if I ever get it I'm not messing about I'm having them off and reconstruction, so my planned removal by breast reduction due to be done today was postponed whilst I now have to see a physologist (head doctor !!!) to check that I no what I'm doing, its not the right decision for everyone but its the right one for ME, I want reconstruction at same time and also have app with plastic surgeon. For me as I said to the surgeon, "Why wouldn't I want to give myself the best chance of it never returning"????? I've spoken to many lovely ladies who having had to have a mastectomy in one breast would have had both if given the chance, I have to have an operation in my so far uneffected breast anyway to reduce it to the final size of the cancer removed and radiated one, so I thought whats the point of that, just get it done so if I am as they think lymph node negative thats it, No more treatment, but like you I imagine that its spreading itself through my lymph nodes as I wait to deemed sane enough through this assessment to make the decision, I'm hoping the op will now be 6th or 13th feb, the waiting is whats driving me bonkers, I'm definately with you on that.

Good luck with yours

BlossomHill XXXX

spoiledrottiemum
Member

Re: Feeling so low

HI,

 

  I had a biopsy done dec 21, 2015, and the results came back  positive for precancerous cells mid grade on the 23rd, yay for me, instead of a new motorcycle under the tree, the cancer fairy decided to visit, dirty B----h. I had my first 10 minutes of emotional upheaveal, after the phone call. SInce then all I can do is to be rebellious against it, Im even throwing a Bye Bye Boobies party. I am refusing to let this diagnosis monopolize my world. I will not be a negative statistic. Namaste

Whitfield
Member

Re: Feeling so low

Yes, does not grow.  Predictive text!

 

px

Ali-B
Member

Re: Feeling so low

Thanks Pam - I think you might've meant 'does not grow as fast as you think' 🙂 but thank you nonetheless - sometimes I just struggle keeping on top of things. Ali xx
Whitfield
Member

Re: Feeling so low

Ali,  try not to worry too much my oncologist said to me it does grow as fast as you think.  I had to have a postponement due to hospitalisation during chemo which meant treatment was stalled for 5 weeks or thereabouts.  You will get through this and if they thought it was spreading to nodes they would have put you on Chemo first I would have thought.

 

your doing well with caring on worki g.  Give yourself a pat on the back.

 

pam x

Ali-B
Member

Re: Feeling so low

Hello All,

 

Just feeling rather 'meh' today. My surgery is at the end of the month but it can't come soon enough. I am feeling fed up today and work isn't distracting me from myself unfortunately so decided to have a moan here LOL. Bad boob is feeling a bit tender today - bit like period pain which I how I discovered my tumour in the first place so that discomfort isn't anything new. Still feel like my bc is somehow ravenging my body and want the b****dy thing out of me. I keep feeling that every week which goes by it's somehow seeping into my lympthatic system and consuming me. Aarrrggghhhh!!! The imagination is a terrible thing at times. When did life get so bonkers?

 

BBFN

 

Alixx

Whitfield
Member

Re: Feeling so low

Ann,

 

thanks cor for message really shoulder.  Can't seem  to find ithe message now but wanted to report its much improved.  Still having physio but getting g there. You okay?

 

pam x

tat4tit
Member

Re: Feeling so low

Yes, Jan, sh*t is what it is. The missed opportunity for earlier diagnosis is a bit of a sleep robber, leaving far too much time for Internet research which almost never makes me feel better!  That's a fascinating link you've discovered and wonderful for NZ ladies that it has made it into diagnostic protocol.  How long it will take to filter through here, if ever, is beyond me.  I think the joined up thinking has to fight against ego.  Senior medics are most interested in their own specialism, obviously, and our hospital management system encourages this sense of fiefdom....

 

So, yes, let's paddle off for a while/for ever.  I'm a bit hampered by the lack of a pec muscle on my dominant side, but anger has a funny way of compensating for that 😉. Don't worry about your appearance in a wetsuit.  I look like an off centre torpedo with one DD and rather concave on the other side!  We can throw poisoned darts, rocks, empty bottles at our nemesises and swear like sailors. I feel a biit better already 😀

 

Hugs and sea shanties xxxxx

Kayak Jan
Member

Re: Feeling so low

Morning Tat.
Kayak at the ready, a beautiful 16 footer which has plenty of storage space for the booze. She handles well on the sea and given the current wind and high seas here locally I would appreciate a paddling mate.
I too will bring darts though my target is somehow a faceless dermatologist
I have had a skin condition (granuloma annulare) for 2.5 years. Visited said dermatology clinic had biopsy etc to confirm condition then nothing. Have since whilst researching my bc discovered there is a direct link to tumours. So much so that in new Zealand patients with this condition are referred to haematology first to find the cause as it can be diabetes . If not diabetic then automatically referred to oncology! So my tumour could have been discovered 2 years ago when it was much smaller and at a lower grade! Sh*t sh*t,**bleep**! Incidentally the condition really developed over the summer but now is fading fast. Why can't we just have joined up thinking. Why pockets of medics who don't communicate within their own field let alone with other medics. Sorry rant over 😠 through all this the idea that it should have been picked up earlier is the one thing that makes me mad. I could have been through all this crap a year ago!
So kayaks at the ready, front storage hold packed with supplies being kept cool (north sea rather cold at this time of year). I must warn you not looking my best in a wetsuit at the mo, little and large at the top and all the comfort eating (drinking) going in in the midsection.
So wish it could be our reality even for a few hours.
Sending big bear hugs, lots of them.
Jan xx


tat4tit
Member

Re: Feeling so low

Oh Jan, more waiting for you, utterly pants news 😞  I so want to not be me this weekend!  Shall we paddle away somewhere in your kayak and get rip roaringly drunk?  You can drink wine, we can both whine and I hope you will help me throw poisoned darts at the picture of 'that man'. I'll happily join in with whatever you need to do to vent re your latest news.  

 

Big hugs, Tat xx

Kayak Jan
Member

Re: Feeling so low

Tat
Been to benchland, understand your new bench. Will join you but I'll bring wine not into G&T.
Went to GP today to find out about ct results on a back problem and discovered the pulmonary nodule I have been told about at breast clinic is looking more like 6 nodules not just 1! Starting to understand why chemo is being pushed. Oncology next Wednesday so I'm hoping to get some straight answers.
So tired of all this crap so cheers alcohol recommendations be dammed 🍷 🍹.
Sending drunken hugs
Jan x
tat4tit
Member

Re: Feeling so low

Hi Jan, have posted news in Benchland, but summary is 33 rads!!  Can't quite believe it, I've never seen anyone say they are having that many... Alternative is 'extensive' and disfiguring surgery.  Hmmm..  It's not a good day for the new alcohol advice to come out 😉

Kayak Jan
Member

Re: Feeling so low

Hi tat
Hope all goes as well as it can tomorrow. I will be thinking of you 😊.
Jan x
tat4tit
Member

Re: Feeling so low

I've been very surprised by the apparent differences between hospital trusts and what they provide as a matter of course.  Some routinely provide copies of reports without having to request them through the data protection act.  I think that for important info like histology reports, we should be given copies as a matter of routine.  Going through the bureaucracy puts an unnecessary admin and financial burden on patients who have enough to deal with and need the info to make decisions about ongoing treatment. I contacted PALS but they misunderstood and reassured me about waiting times when I was actually complaining about having to go through the process at all...!  

 

Im sure there are good BCNs at my hospital and I'm also sure the pressure of work is a factor in the apparent lack of pro-activeness. I'm so glad you had a good one yesterday, they really stand out and make a difference.  Tat xx

Kayak Jan
Member

Re: Feeling so low

Hi tat
Thanks for the hug needed it. Ok again now 😃.
Interestingly my assigned BCN wasn't at my appointment yesterday so another one stood in. Wow the difference. She told me to make an appointment with a bra fitting lady seemed surprised it hadn't been mentioned. I had even asked the other BCN about bras at a previous appointment. I asked my consultant for a copy of the histology report he told me he couldn't get a print off but I could request one. The new nurse asked me what I wanted to know and promised to do me a summary form with relevant details which she promised to give me at todays session. Sure enough she met me at the door with it. I still intend to request a copy though.
I have got my first oncology appointment next Wednesday and am feeling pretty apprehensive. I hope yours goes as well as it can on Friday I will be thinking of you. Then I'll be waiting for you to tell all 😊. Looks like we are going to follow each other through these on coming challenges.
Love the idea of Booby brain going to use that as my reason for all memory lapses and muddled behaviour in future.
Sending hugs
Jan x
tat4tit
Member

Re: Feeling so low

Sending a huge hug, Jan.  If you wanted to go to the info session then you were right to give it a go, and anything at your clinic should be a safe place to let go and have a cry!  My rational head knows I won't always feel so vulnerable and tearful, but the rest of my head definitely isn't listening and keeps ambushing me when I least expect it!!  People seem to think that if you're healing well from surgery then you're fine (I've even thought that about myself - the old 'get a grip' chat) but the emotional fall out is so much harder to grasp hold of and measure progress.  I seem to have a few good days and then crash again; It doesn't help that I'm awaiting the first appointment with my oncolgist (such a scary word) on Friday and reading too much about angiosarcoma 😞

 

I called my BCN today to ask when to expect an appointment for a prosthesis fitting.  She sounded surprised and asked when I wanted to make one... No-one told me I had to request one or I would have done it much sooner!  They're all very pleasant, but they're not as proactive as the sarcoma nurses and that matters when a large part of my brain is away with the fairies.  I call it Booby Brain - similar to Baby Brain, just not as cute 😉

Hugs to all, Tat x

 

 

Kayak Jan
Member

Re: Feeling so low

Hi tat
Thought I was ok even drove today first time since August. Went to an information session at the breast care unit this afternoon. Decided to go in on my own thought I was ok. Got into the meeting room full of other BC ladies sat down and tears just kept flowing. Was really keen to listen and sat there trying to stop crying. Lasted for half the session then I just had to leave. My bc nurse followed me out and talked to me. She told me to give myself time.
Probably was to soon, only got results yesterday after waiting 5 weeks.
Doing ok now. Think you're right tat need time to get my head straight.

Ali we are in the middle of sorting out our will. We had talked about it for months before all this stuff but then I just wanted it done. At checking stage now. Not sure how long it takes as we have a family member doing it. It was quite simple for us. Just out a long questionnaire then emails. I think you need to do anything that gives you peace of mind. I know it became important to me to do it.
Keep talking ladies we all need the support and this outlet.
Jan x
Ali-B
Member

Re: Feeling so low

Here's the latest Victoria Derbyshire video/podcast about her chemo and hair loss journey.

 

Not sure if it's quite the right place but thought you'd ladies might be interested to see:

 

http://www.bbc.co.uk/programmes/p03djyl7

 

Feel free to post it to other threads.

 

BBFN

 

Ali xx

tat4tit
Member

Re: Feeling so low

I'm glad you have more information now, Ali and you managed to sleep OK last night.  Please don't apologise for taking up time and being consumed with your own misery, we're all there or thereabouts at the moment!  It's also why we can support one another; at any given time one of us is bound to be in a good enough place to comfort those that need it 🙂

 

Re your Will, I had never had an operation before my mx and my thoughts went there too, I think it's only natural.   If it helps you to prepare for the op and go in feeling calmer then start the process of making your Wills.  How long it takes will depend on your solicitor and how complex your financial affairs are.  It would be worth making some enquiries to get an idea of timescales and then decide together if it's going to be achievable or put you under additional stress.

 

Hope you're feeling OK today, Jan.  I felt a bit wobbly for a few days after my results appointment as it sank in...

 

Hugs to all, Tat x

Ali-B
Member

Re: Feeling so low

Hello Ladies,

 

Well, back from the consultant and have confirmed my BC is oestrogen (7/8) and progesterone (6/8) receptive but HER negative. Totally non-committal about if I will need chemo (tended to err on side of radiotherapy) until surgery and node testing at that time. When I did ask why is it sometimes ladies are offered chemo to 'shrink' tumours - he mentioned that whilst that can shrink the carcinoma areas it's the 'calcification' which it does not treat and that can be part of the early breast cancer process - and if you already have it (which I do) it's considered suspect. So I am booked in 28/1 and am praying that the nodes will be clear on surgery day. Either way it will be out of me and that is something to aim for.

 

Thank you all for listening and being so understanding. I can't begin to express how much you've all helped me these past weeks - I feel bad I have been consumed with my own misery and not reallly been there for all of you. But I do think of you all so much.

 

Lots of love, Ali xxx

 

 

 

 

 

 

Kim555pink
Member

Re: Feeling so low

Good luck today Ali! Hope you get all the answers you're after. Pleased you slept well 🙂
Delly! What can I say! I love reading your posts, completely off the wall - just what I need to get me through the day 🙂 You're amazing too - keep going girl, the world is a happier place with you in it!
Good luck to you all with whichever stage of your journey you're going through 🙂
Xxx
Ali-B
Member

Re: Feeling so low

Morning Ladies,

 

Yes I did sleep well, thank you all for your support. Today's meeting will confirm fully the hormone response tests, and also the outcome of the consultants meeting which happened last week (where the consultants of different disciplines get together and decide if they want to do further tests blah blah). I already know that the Radiologists (ultrasound/xray folk) don't require any further lymph biopsies (they originally came back clear) but I know the lymph tests during/after surgery are the real deal. I currently know the type (grade 2 IDC) and the size 4cm */sigh/* and that I will have a mastectomy with reconstruction/expander to keep it all 'up' during treatment with a view for the permanent implant when treatments are done (well that's what they tell me so far - I know things can change). 

 

I know this sound panicky but my husband and myself don't have a will drawn up yet (was planning on it this month) and I am thinking of squeezing something in before my surgery. Am I mad?

 

Ali xxx

Ali-B
Member

Re: Feeling so low

Morning Ladies,

 

Yes I did sleep well, thank you all for your support. Today's meeting will confirm fully the hormone response tests, and also the outcome of the consultants meeting which happened last week (where the consultants of different disciplines get together and decide if they want to do further tests blah blah). I already know that the Radiologists (ultrasound/xray folk) don't require any further lymph biopsies (they originally came back clear) but I know the lymph tests during/after surgery are the real deal. I currently know the type (grade 2 IDC) and the size 4cms *sigh* and that I will have a mastectomy with reconstruction/expander to keep it all 'up' during treatment with a view for the permanent implant when treatments are done (well that's what they tell me so far - I know things can change). 

 

I know this sound panicky but my husband and myself don't have a will drawn up yet (was planning on it this month) and I am thinking of squeezing something in before my surgery. Am I mad?

 

Ali xxx

delly
Member

Re: Feeling so low

Hello Lovelies - yeah, we're a brave lot us women aren't we. Keep giving yourselves a HUGE PAT on the back - preferably by TREATING yourselves to something reeeally nice - whether it's nice bath smellies, a massage of facial, a nice meal out, go see a good film - comedy or nice romcom. You NEED it and DESERVE it - cosset yourselves.

I hate that you're ALL having to go through this - seriously breaks my heart. All the women on here, hundreds of us. 

Quite a few of you sound to have surgery looming up soon, be it lumps or Masts. It's tough - but you WILL get through it. Personally, I would ALWAYS advise ANY woman, whatever your age, to always have recon with a mastectomy and preferably "Immediate" recon. My attitude to it being - the sooner you have your LOSS REPLACED with a permanent substitute - the BETTER and the QUICKER you'll get back to near norm again.

I've had to wait 9 years to be in a position to have recon and it SMASHED my confidence to BITS, as a single woman at 46 without boobs. Haven't had a partner since - the thought of intimacy with my boobless body being a NO NO. So I need to get myself back onto the recon horse and then concentrate on finding a good and decent partner to share life, ups, downs, take care of each other and cuddle each other. I'm gay so it may have to be Match.com as they have a sectionn devoted to women looking for women.

I miss physical contact, especially hugs and mine are pretty special ones - you know !!!!! HONEST!! Delly "spesh" hugs - do you want one ?? Coming up. Gotta get in really, really close and WRRRAP ALL of my arms round you, then I cling on for a good 3 mins at least - Nice aren't they ? I should get 5 STAR rating

 

Listen - you are not alone in all this. We may be virtual BUT it does still work and I wouldn't be living if it weren't for all the amazing support I had through a dreadful mental state  - I was ready to do myself in, even sourced where to get the chemical from. Yes, THAT bad - No boobs, no partner, no family, no business, no income, no kids, no purpose.

Sooooooo, all that's in the past now.

 

Please stay in touch w2ith how you are and where you're up to and we'll be HERE for you - Okey-cokey ?? 

tat4tit
Member

Re: Feeling so low

I hope you managed to get some sleep, Ali and you get the answers to your questions at your appointment.  No-one can answer the 'why me?' one, though, and we all know how hard that is.  I thought I was doing well, but I've cried so much recently I look like a frog!  The news and media are all looking at the year ahead and we don't or daren't know what's going to happen.  It is so hard, but that's where the ladies on here who are further down the line are so helpful in keeping us going.  Let us know how you feel later.  Jan's offered to pour the wine 😉

 

Hugs, Tat x

Kayak Jan
Member

Re: Feeling so low

Ali
Sending loads of positive vibes for today.
Just know that whatever happens there's a whole family of ladies here who understand. We are the silent back up team, your safety net who will always catch you. Bit soppy but that's how I feel about this forum. My heroes and my rock. Thanks ladies.
And if all else fails there's always a ver big glass of wine 😃
Jan x