Hi jo, so sorry you are feeling so low, I remember feeling exactly the same as you before chemo started but I can honestly say that once the first one was done I began to feel more positive, and started counting down to the final treatment. Chemo isnt fun but it is doable and not everyday was a bad day. Good luck and hugs to you x
Jo do try and give the helpline a call tomorrow - I think you will find it helps to just pour it all out to them. Try and involve your little one in helping you find nice scarves, wig etc. to make mummy look nice :). I was told I couldnt have the cold cap, but when they understood what it meant to me they agreed. I didn’t have anyone I knew to say they had tried it and it had worked. So much depends on how sympathetic the oncs, nurses etc are and I suppose these things all take up extra time. A lot of people don’t like using them either - they say they are painful, and get headaches etc. You sound so very worried about all of this and I suspect once it gets going you are going to find it all a lot easier than you have feared. I think many of us have this - and it is all the waiting for things to happen that gets to us. Knowing you lost your friend to this disease must be making it so much harder for you as well but do remember we are all so very different in the way we react to the drugs, and this disease. I know my oncs would have told me long ago that my prognosis was not good but I reckon as I have survived 21 years I can safely say they were wrong :).
Hope you are in bed and not reading this till tomorrow :). Talk any time and if it helps and you want to pm do feel free to.
Dawn
xx
Thank you Dawn that really helped.
I had my blood test today and got to talk to my chemo nurse, which was very helpful. I start on AC tomorrow for 4 lots. Still not feeling much happier about it but still, I need to beat this thing.
The tears are still coming and I am still in a dark place but I am trying to think positvely.
Thank you all for your kind words, they really do help
Jo
x
Well it has been a rollercoaster week of emotional horror, and I am grateful for a website like this and the knowledge that other people were “out there”. So far I have had a bit of a disastrous start to this journey, a doctor with the sensitivity of a bar of soap being the first of these milestones. I think everyone I have told about how I first heard about my results have just been absolutely shocked, including the surgeon I saw today. He said "I will definitely be talking to my colleagues about how they deliver the results of tests. "
However, this morning after phoning to find out where my appointment letter was, I found out I had an appointment this afternoon at 3.30!! There as a 2 hour delay and I was scared to death I would be sent home and have to wait another week, but they kept working till they saw me about 6. The most wonderful word I heard today was treatable. There is a lot more I havent taken in, but its better than “very bad”.
I met the most wonderful doctor today, and the most lovely nurse. And no doubt I will meet many more like them, and be in touch with many more like you. And I am very grateful for that. I hope I can also help people at the same stage in the journey get through it all. My goodness. What a week.
sjj, Rollercoasters-R-Us most definitely with cancer, eh.
If you had a breast care nurse in with you, you might want to give her a ring today to go over what was said in your meeting yesterday. I know what you mean about not taking anything in, sometimes it’s all just too much. But I’m very glad you found a word you liked - “treatable” is always a good one!
Something I found particularly useful is a little notebook, so I write down questions as they occur to me, so I can ask them when I see whoever I’m seeing next. The notebook also helped me to “pace” the meetings, as I also wrote down all the answers and any info they gave me, so I could look at it later on when my head allowed me to take things in.
Hi.
I did take a notebook full of questions and a pen to write down the answers, but when I heard the word “treatable” I turned into an inane jabbering idiot! And for the next hour heard nothing at all really. I was given a huge file of information and the number for the breast care nurse Kirsty, who was with us who told me I could phone anytime and she would get back to me as soon as she could.
Part of me is still dealing with “its bad” but compared to what I have been thinking all week I feel like celebrating. Guess this turns you a bit doolally for a bit.
Yup, doolally is another good word. (“Gibbering idiot” was also appropriate for me at times!)
Give your BCN a ring when you’re ready to get the details down, she’ll be very happy to talk you through things again until you’re happy that you understand stuff, and you can call and ask questions if you think of anything else. You might be able to arrange to meet with her if you find that is better than a phone call. BCNs are worth their weight in gold.
Yeah, “it’s bad” is quite true. Cancer IS “bad”, whatever sort it is. You might find it helps you deal with that doctor’s appalling bedside manner if you write a letter to your consultant expressing how you feel about it, so that the consultant then has something to take further in order to assist said doctor in improving his bedside manner. I had an orderly make a particularly inappropriate comment to me which made me very upset, so I wrote to the surgeon about it and her response was superb, and I felt that it would be dealt with properly, so doing that might help you put his comments into the appropriate place.
Yes,I think I will write, if only to spare someone else. It was a female doctor, the one that did the core biopsy, not a he and everyone else so far has been lovely, from the radiographer, to the reception staff.
I have an operation scheduled for the 6th April so it all seems pretty efficient really. And as I said to the surgeon yesterday, I am proof of the benefits of the screening programme I suppose, no matter how insensitively the results were given. Because if I had not gone for a routine screen, I would be none the wiser. Even the surgeon could not feel a lump. Only the machines found it.
I had a horrible GP the other day so I know how you feel, still deciding what to do about it. I am being treated privately only because work pay for it and he was obviously anti private treatment. Had me in tears both in his room and afterwards. Told me on the morning of my 1st chemo that in his experience private care wasn’t the best and patients usually got left and forgotten during the treatment. Well thanks Mr GP thats just what I wanted to hear just before my 1st chemo, also told me as I was private I couldn’t get any backup drugs (antisickness etc) from him. Yeah really helpful thanks.
Thank goodness everyone else has been lovely.
I bet quite a lot of GP’s use private medicine, and as half of the medical profession practice jointly in the NHS and private practice that is a hyprocitical thing to say. It also doesn’t seem right that you can’t be prescribed medication. It’s not as though you are using the private sector for some cosmetic surgery. Perhaps you should go to a new GP.
Hi, Like you I didnt feel a lump, only found on my first mammogram, my surgen also could not feel the lump, & told me I would not have felt anything for another 18months at least!!!. God knows what would have been the outcome then. So going for screening does matter, even though we would rather not be here. I went private for my surgery & NHS for my chemo and I can honestly say apart from the food the treatment as been great from both. I still go from feeling really positive to feeling like I will never get through this,but talking to others really helps, thanks ladies, Lesley x
JoC I am also being treated privately but my GP practise has been brilliant, even calling me at home to let me know that they were fully aware of the treatment that I was having, and to not hesitate to call them if I needed anything from help with appoointments to back up medication. In fact I have my pre-chemo blood tests at the GP surgery. It is definately not right for them to refuse to help you with medication and they should provide you with support through your treatment.
I was also diagnosed from a routine mammogram and had felt nothing before even though I have always checked regularly as my mother was dx at 50 and died of secondaries at 67.
Sue
Definitely proof for JoC that she needs a new GP! Probably the breast cancer nurse would have some local knowledge about a good one to switch to.
My problem at the moment is clearly not being able to sleep!
Could I ask how others have dealt with telling people? The only people I cared about telling were my family. My partner has obviously known about all of the appointments, and I told my daughter immediately after I had the “proper” story from the surgeon as I had a bit more to tell her than “its bad” - and I had a lot of hope to offer her. I am going to see my son tomorrow, which I had planned to do anyway funnily enough and will have the benefit of telling him face to face, not on the phone.
But from the minute I had to take time off work to go suddenly for a call back my boss has seemed desparate to tell my team. We almost had a stand up row today when I left to go on leave, and then will be off sick for a bit when she told me she wanted to tell them. She seems to think they need to know so that they can send me support. I personally do not want the whole building to know. My partner and I have discussed it, and he thinks maybe some of them who I am quite friendly with will be hurt that I have not told them as they would want to be supportive. But I feel strongly that it is a hugely personal and intimate matter. I feel that people on these forums, who are experiencing it will be more able to support me. And it is anonymous.
I looked in the family and friends section and I have sent my daughter a link to this forum as I hope it will be helpful for her. Perhaps as she is female my diagnosis is scarier for her because of the genetic factors although no one else in my family has ever been diagnosed. Once I have told my son I will also encourage him to have a look. Anyway, I would be interested to know how other people are dealing with this issue.
sjj, I suggest you speak to HR as a matter of urgency and get THEM to explain to your boss that it is not her place to divulge personal information about you to all and sundry. As you say, it’s personal and NOONE’SBUSINESS BUT YOURS! Your boss might also find she gets the company into serious hot water if she does go blabbing when you’ve expressly said that she does not have your permission to discuss your personal circumstances, so that should also be pointed out to HR so they can read her the riot act.
Good luck.
Glad I am not the only one who does not sleep! It has upset me a lot, and not like I need more upset. I was very angry with her after I told her in confidence last week that I had been called back that she told someone else (her manager) who she said she had sworn to secrecy. I had not even told my own children at that stage.
She justified that by saying she needed to tell him as my work might need to be re allocated,(even before I had any results) and in fact that is what she said today. She said she would need to tell my colleagues as she would need to ask them to take my work. I told her to tell them I had f… emigrated to Australia if she liked.
This really does make you reavaluate your life I guess. My partner is right, I do have friends at work that in time (when it is right for me) I might tell. But for goodness sake. You think you know people. I think thats why I asked the question, I just wondered what had happened to other people.
sj99 - sorry to hear you can’t sleep either and even more so over your work situation. They should be respecting your wishes. I immediately told my staff who cried more than me, I was stronger in those days! My immediate boss was informed but he already had an inkling as I had told him I had hospital visit. My staff have been marvellous and not divulged anything to the whole company and likewise my boss but now that I have started chemo and look different a few people are guessing - not that I am working I only keep in touch. Obviously when you are absent from work for such a period people do enquire and now that I am further down the road, I am not too bothered as I can’t hide it (wish I wasn’t on this road)! Like you I was diagnosed at screening as reached 50 and had no lump. Bit scary as it had already spread to my nodes and this is the bit that scares me even more as where would it have ended up if I waiting for typical symptons? I HAVE TO THANK THE NHS FOR THIS SCREENING SERVICE, WHICH I UNDERSTAND IS TO REDUCE TO AGE 47 IN 2012 - GOOD NEWS! I am having all my treatment privately but my GP is marvellous, he contacted me to go and see him when he got the letter from my Consultant. With regards to medications I have got myself one of those Free Prescription Cards which we are entiled to if we have BC. Most of my medication is supplied by the hospital admininstering the chemo but my GP gives me the Nulasta injection and is more than happy to do so and always asks if I need anything else. Hope I am not speaking too soon! or maybe I have just been lucky so far. Telling my daughters and parents was the hardest bit for me! I told all my friends as soon as I was diagnosed just to get it over and done with. At first I didn’t even want to tell my partner that I was recalled for mammogram, but I am so glad I allowed him to come with me, as I do not know how I would have coped without him!!! 
Best wishes Adi x
She had to tell them in order to reallocate your work? Rubbish! She can reallocate your work because you’re off sick and doesn’t need to say a thing about the reasons for your sickness. Feed her to HR, who if they’re worth even a pinch of salt will tell her EXACTLY what she’s allowed to tell others at work. Oooh, that makes me so cross for you!
Hi everyone,
Sjj99 - I totally agree with CM - it is bang out of order for your boss to pass on ANY personal information about you to others without your express permission - whether its a health issue, marital problem, bereavement, or anything else!!! As you say, you have some close friends at work that in due course you will want to share your journey with, but as far as anyone else is concerned, you are on the sick and if they are allocated additional work they just need to get on with it, just as they would if you were off with a broken leg!
Also I echo what others are saying about the screening programme - I too was diagnosed at my 1st routine mammaogram in January aged 50. I check myself regularly and had absolutely no idea anything was wrong. Even after I knew it was there i could not feel the lump! My surgeon said it had probably been there for a couple of years, so it is great news about the screening age being reduced to 47. And its spread to 1 of my nodes too, I start Chemo on Monday. I am really scared but can’t stand the waiting…
Its so reassuring to know there are others out there going through the same thing, big hugs to you all and good luck.
Liz x
I am one of those people who cant hide anything, so as soon as I got the call back 2 days after the mammogrameveryone in work knew something was wrong. I spoke to my manager & asked her to tell the team, as I didnt wont people talking & putting 2 & 2 together & coming up with 6!!!. I have to say eve
everyone at work has been fantastic, so supportive. As for my children who are 27 & 22, I had to tell my daughter on the phone as she livs in spain, she seemed to take it very well, & was you will get over this. My son is in his last year at uni & was very stressed to start with so decided to ask the ex husband to speak to him, he was useless & gave him all the wrong information, so I have to retell him myself. I found telling people what was happening the best for me, I needed as much support as I could get, as I live on my own, as was really struggling with getting my head aroung the dx. I dont think I slept more than a couple of hours for what seemed like weeks. Now Im on the treatment path I am sleeping much better. Even now sometimes I dont wont to talk to people about this thing & my family & freinds respect that, but I know if I wont to talk they are all here for me. My son is back home today, if only for a few hours, so Im looking forward to that, even if his hasnt seen me with no hair yet, perhaps I will keep my wig on, so as not to scare the life out of him Lesley xx