I am in a mess, I don’t know where this has just come from but I am crying and crying and I can’t stop. I have been on here this morning posting on some heart rending threads trying to help if I can. I have been in the DDI to say I am having a duvet day on my own as OH and daughter both working and its lovely but I have been debating whether to put my profile on as I was lucky to get an early diagnosis and good prognosis and so many of you are in a much worse place than me although I had endless problems with the system at the start of all of this.
Every time I was told A B and C would happen the reality was D E and F happened. There wasn’t time to do all the tests at my first appt even though i was told they would happen so I had to go back, the needle biopsy went wrong [no cells in the pot at the lab] so I had to go back again for this. BCN said I was 1st on list on surgery day, got there at 7.00am as requested finally got a bed at 11.30am and went down at 2.30pm but I was convinced they were going to cancel it and i wanted to kick out a lady with an ingrowing toe nail who got a bed before me. BCN said if I had 1 drain after surgery that meant no nodes involved, woke up with 1 drain so very relieved then told by doc at 7.00am next day that 20 nodes removed cos central node was positive. Had to wait extra 2 weeks for results cos BCN refused to tell me anything even though she said she would.
I had just decided to write this all down for the first time and it took me ages when I pressed something on this ruddy computer and lost the whole post and now I feel like I have wasted a whole morning of my precious life. The sun is shining and I’m not even dressed yet and the tears wont stop now.
I have just read this back and I dont mean reading your stuff and responding is a waste just that it took me so long to write about my experiences and than I lost it and now I dont think I can do it again, sorry didn’t want to upset anyone with an unintentional comment.
Hi AJ
Sorry you are having such a crap day, you have every right to. I think we all find this stuff emotionally draining, it is not being in control, well thats how it is for me to a degree. I am having a duvet w/e! Ignoring housework and pretty much everything else.
Hugs Alicex
Hi you don’t say how old you are, but i think it is quite normal to feel the way you do, i know i sometimes feel like running away. It is hard having to wait for results and you can’t seem to function properly as your life is on hold. Please contact me if you would like to chat further. Michelle
Hey AJ - really sorry to hear you are having a bad day. We can’t always be strong, no matter how we try, and I know you are usually a very positive, upbeat person. Try to bear in mind your usual mindset, and allow yourself the time you need just now to cope with the emotions you are feeling. You are still being incredibly strong as you are only allowing yourself to feel low and emotional when nobody else is around to be affected (OH and daughter).
You know where we are if you want us…take it easy…
Thank you for your words of wisdom and for taking the time to write them, I normally offer help rather than ask for it but it is a great comfort when you need it. I would like to bring you up to date because my post isn’t the whole story, I didn’t think I could work through it again after losing the post this morning but I have been for a walk with my dog and have now poured myself a glass of Pinot Grigio and will fill you in on the rest.
I had a WLE with 20 lymph nodes removed, my results were 13mm grade 3 tumour, total clearance, central lymph node had micro organisms but the 20 nodes removed were all clear. I had a CT scan, bone scan and chest x-ray all of which were clear and I was booked for 6 FEC and 15 + 2 rads followed by tamoxifen for 5 years.
The chemo was harder than I ever imagined and I think I had every side effect on the list. I had to change to Taxotere after the 3rd FEC as it caused problems with my heart. the 1st TAX left me neutropenic needing a 6 day stay in hospital [my LOL Moments thread came from this stay], I had to have a wisdom tooth removed due to an abcess and was told I had to sort this myself which cost me £178. Looking back I should have argued this but when you’re ill and scared you don’t argue do you
I am pleased to tell you that the rads were a breeze with no particular problems and all treatment finished on 4th January this year. I am now on the tamoxifen which apart from my jacket or quilt going on, off, on, off all day or night and some weight gain is Ok. I have had a follow up mammo and scan, both of which were clear and now have a further appt in 6 months.
I only came to this site recently after everything had finished and haven’t faced up to it all this until now. As I said there are so many people on here coping with much more than me and I have total respect for them. I can’t read the secondaries posts cos they scare the cr*p out of me and I’m not in a position to offer any advice on this area.
I am 42 years old, have been married to my OH for 12 years and have a 19 year old son and an 18 year old daughter and of course our lovely cocker spaniel Molly. You are right Sue that I only loose it when they are not here, I suppose its the in bred need to protect our family but I am grateful for this place to come to when things come crashing down.
Hey AJ - you crash, we’ll be there with the fire extinguisher etc…you ain’t gonna crash and burn on our shift! I think you know my situation, but I’m 41, married for 18 yrs this year (I could have murdered him and done less time!). and we have two kids coming up 17 & 16 this year. So, we are in a pretty similar place with family hassles etc. You’ve had a sh**t time. You are allowed to feel a bit “wow - this is not my beautiful life - what the heck happened?” My advice is not to get ahead of yourself post wise on this site - I’m really not looking forward to the tax…wish I’d never looked. I’ll save that one til after the next (and last) FEC.
Be kind to yourself, and hide in your room if you aren’t feeling strong enough by time family return…this is your time, not theirs.
Hi,
im 35 and just about to start my chemo. I think you are very brave to hold it togheter to not upset others - people keep telling me I shouldnt bottle it in but hard sometimes. I cant read the secondary stories as I get so scared and need to focus on now.
Hope you enjoyed your walk with the dog - its amazing how much at ease you can feel walking a dog!
I thought you may find of interest Breast Cancer Care telephone support group which offers you a chance to get together once a week to talk with people who’ve been there. Linked together by phone in comfortable surroundings, you can discuss the practical and emotional impact of living with breast cancer. The groups are free (we pay for the phone calls) and as long as you have access to a phone and have a quiet private place from which to call, you can join us from anywhere in the UK. breastcancercare.org.uk/content.php?page_id=2387 For more information about this and our other support sevices please telephone our helpline on 0808 800 6000 (Mon-Fri 9am-5pm and Sat 9am-2pm) or email: <script type=“text/javascript”>eval(unescape(‘%64%6f%63%75%6d%65%6e%74%2e%77%72%69%74%65%28%27%3c%61%20%68%72%65%66%3d%22%6d%61%69%6c%74%6f%3a%69%6e%66%6f%40%62%72%65%61%73%74%63%61%6e%63%65%72%63%61%72%65%2e%6f%72%67%2e%75%6b%22%3e%69%6e%66%6f%40%62%72%65%61%73%74%63%61%6e%63%65%72%63%61%72%65%2e%6f%72%67%2e%75%6b%3c%2f%61%3e%27%29%3b’))</script> I hope you find this helpful.
AJ - So sorry to hear you’re having a rotten time just now.As everyone else says,it’s ok to feel bad sometimes.It must have been horrible to have problems with your wisdom tooth in the middle of all this crap.I’ve given birth 4 times without drugs,but had to have a general anaesthetic for my wisdom tooth and cried like a baby for 3 weeks with the pain. Your duvet day is well- deserved!
I think like most of the women here you feel obliged to make sure everyone else is OK befoe"allowing" yourself to feel bad.I guess it’s just a woman thing. Take care of yourself and ask to be pampered a bit.
Tricia
xxx
I think there are many people here who post lovely replies to others but never complain about their own situations and should. I know I do that sometimes.
You deserve your duvet day and just feel free to come and moan when you want to.
I think you are right not to read the secondary thread at present. I did when i was newly diagnosed and it did scare me so much and upset me. However, now that I have secondaries and spend a lot of computer time in there, I think you can be amazed by how long women with secondaries can live for and how ‘normal’ some of their lives are but definately not recommended if feeling low or scared.
I keep losing posts on this site - I wonder if I’ve just made them too long and it locks me out. it makes me very angry that I havce spent so long writing a reply or a post and whoosh it’s gone!!!Hopefully, the upgraded site will overcome this.
Hope you are feeling brighter - the weather has been better here today which always helps me.
Kate
Hi AJ
little things like the computer not working properly sends me into a huge rage!!! doesnt the stupid thing realise i havent got time or energy for it not to work! to make you laugh i thought i would do my grocery shopping on line on sat night, spent 4 hours doing a huge trolley in virtual tescos, for then to find out they wouldnt accept my particular type of card, yes i cried and shouted!!!
Anna
Thank you for your kind replies, it does help alot, Anna you must have been gutted, the air would have been very blue if that happened to me.
My daughter came home from work all bright and breezy and said Hi mum what have you been up to today prompting another flood of tears, when i finally said nothing, I wasted the whole day she just said so whats wrong with that, problem solved!
Hi AJ
I have not been able to post last week for some reason,only been able to read everyones thoughts.Sorry you had a poor day,it is hard to face up to this I know and sometimes emotions take over when you least expect it and the best you can do is go with it and let it out.You have a good family and that is a big help. hope you are feeling brighter now.
.
Take Care of yourself
Mary
x
A few weeks ago I left the site. Got to a point where I was getting very low reading some threads and became obsessed that I had all these various supplementary illnesses. Had a few weeks off but have been back a couple of weeks. I feel stronger now, and more able to not visit or turn off when it suits me.
You have every reason to cry and feel down. BC is a terrible illness no matter what grade or stage you are at. You don’t need to compare yourself to anyone else. Your illness is valid to you. You have to live with the consequences. You will have days like this. I just wanted to say that they get less and eventually ‘almost’ go.
hi
dont worry about wasted days they are not wasted they are rest days!!! i have a friend? who is my age 35, still lives at home with her dad, and she does nothing and i mean nothing!!! (and she has good health)