Yes, Carolyn, I was having one of my dozing nights, and listened to it all on the radio, and some tv at 4am. I heard about it at about 10.30 bedtime, but it didn't sound anything important at that point. All so very sad. The audience were mostly young girls, some only 10 with their mums. I've just read about a homeless man helping a 'little girl' who had lost her legs. He said he often begs in the doorway.
Just sharing here. But from what I've seen and heard people helped and the services were fast and amazing. Good to see the very best in people when needed. I can imagine my little grandaughter wanting to go to something like this in a few years. Just innocent pre-teens. A lot of parents waiting for them outside.
Welcome Stripey, I haven't been a member for lomg but have gained lots of support from this forum.
Carolyn and Natalie, Yes dreadful news and I'm only 15 minutes away. my family and friends are safe and my daughter has struggled into work this morning. Manchester is a strong city and very resiliant. xx
Jellytot So glad to hear you are feeling more upbeat and even a bit hungrier! Hope treatment goes well. Hurray for Dr Zap
love B x
Feeling so much better now I have a plan. I'll be having 4 weeks of daily radiotherapy, one big blast to my pelvis and the rest will be on my sternum and ribs. I'll be likely coming off tamoxifen and having some other hormonal treatment and maybe zoladex. Rads planning meeting is tomorrow so at least they're moving quickly. I didn't ask my prognosis, nor was it volunteered. Dr Zap was so much nicer than the harbinger of doom I saw last week. He said many times, our aim is to get this into remission whereas last week the breast specialist made me feel like I was being written off. I even managed to go out for dinner tonight! Only Wagamamas and I only ate half but small steps xxx
Been off here for a while as I've been on Baltic cruise. Because my cancer is also in my bone marrow they stopped my treatment for over 2 weeks as they they felt it could drop below an acceptable level. Been to hospital today to have bloods checked and I have to have a blood transfusion tomorrow. So they made the right choice.
Welcome to all the newbies, I see how helpful everyone has already been.
Jellytot, I have the same problem with food, where it seems that my throat just closes up and there's nothing I can do! I accept it more now where I justused to worry before. On the cruise I lived on vegetable soup and fresh cut fruit after the first few days and drank plenty of water. Not many people go on a cruise and lose weight ha ha!
Suze, I was a teacher in a primary and chose to give myself some time off. I know it's difficult cos to be a good teacher you have to be so dedicated so it goes against the grain, but this is time to focus on you.
Good luck with everything everyone. Looking forward to the expected heatwave, it was cold around the Baltic.
You are so young & I am really sorry that you won't be able to start a family now, my heart goes out to you. The advice from the lovely ladies on here is brilliant and I can't really add any more than to say make time for yourself, talk to your husband as much as possible and ask at your local hospice if there is anyone you can see for counselling either just you or your husband as well. I go to a specialist oncology psychiatrist and she is absolutely brilliant - I make an appointment the week after I've seen my onc so we can talk through everything be it any changes to treatment or coping with the world in general. I was diagnosed straight in with SBC at 44 and I'm now 49 and fingers crossed, here for a good few years yet!
You take care,
Sending ((((((cyber))))) hugs, love Helen x
Dear Jellytot, you need some help now and you deserve it, if, me there are no specialist nurses at your hospital then ask for an early referral to your local hospice, they have lovely sympathetic nurses and will help you with everything.
thinking of you
Hi Jellytot, you mustn't feel guilty about anything, it's not your fault, though cancer can make you feel it is. Cancer is quite indiscriminate about where it goes and what it does to our bodies and our lives. It seems to be completely random. Whatever age we are we feel regret and guilt about things we didn't do, opportunities we didn't take, words we didn't say. However, when you know what your treatment involves things will get better and, though not everything will be possible, many things will.
You need to talk to someone, I expect there will be something in place at your hospital for this so tell the oncologist how you are feeling and the effect it's having on you and ask to be referred.
Hugs for tomorrow
Love B xx
Oh Jellytot!!! 😢 My heart goes out to you... no matter what each one of us say, the pain you both sre experiencing is very unique to you. Take care if yourself, try water with sliced ginger as it might help. Also, sometimes what helped me was after writing the posts to show my husband so I didnt have to repeat or he would have a bit of a glimpse of what is giong on in this messed up head of mine! 😏
Big big hugs ❤️❤️❤️❤️
OH, Jellytot, No wonder your stomach is a mess and you don't want to eat! You are under a lot of stress, with the cancer, treatments and the biggest stress the disappointment of a family. Please take it easy on you and find ways to treat yourself! I know your hubby is probably disappointed. I bet his disappointment is more for you not having a little one than for himself. Just like your disappointment is focused on you. Hold each other tight, get through this rough patch, then maybe take a little vacation and focus on each other. Once you get yourself together maybe you could do something like foster care (I'm from USA that's what they call it here when you take in displaced children). There are so many children that need a loving home. I used to do child day care in my home. I always told the parents they were half mine. I would get them as infants and then they would leave when that went to school. I fell in love with each and everyone. It broke my heart when they would leave my care. There is a way I'm sure for you!
For your stomach, I was going to say Italian water ice or fruit slushy. I know for me mashed potatoes were my best friend at one point. Good luck! BIGGEST HUGS ever!! FF
Hi Suze, didn't know that about bone mets, you've given me a real boost with that info so thanks! Enjoy your weekend.
Thank you all, some great advice.
I don't have kiddies no and I'm currently grieving for the fact that I never will. I'm also feeling incredibly guilty that I have taken that away from my husband. In February next year I would have been on tamoxifen for 5 years and we were going to take a baby break from it to try and start a family and now that will never be 😞
I'm also finding it very very hard to eat. For a fortnight now (since my biopsy, scans and subsequent secondary diagnosis) my nerves and anxiety are creating a mental block and I'm finding it so hard to eat. I've lost almost a stone. I really enjoy food normally but as soon as I put any food near my mouth my stomach turns. I've got anti-nausea meds but they don't stop this stupid blockade. Any advice very welcome xxx
Hello ladies! Oh Dear! Its the 20th May already! Wasnt expecting it this earlyxx
Suze, that is brilliant news! A weight off your mind for the weekend! Enjoy.
Been for ultrasound on right breast and its cancer free. The doctor was talking to me afterwards and said bone mets are one of the easiest to treat and lots of drugs available. I knew this but it's always good to hear. Off work for a fortnight now and planning to rest and relax. Have a good weekend ladies. X
Yes, Janette - we (our cancer and symptoms and se's) can be managed. Remember, there are many people on the Forum who have now "survived" many years with Secondaries. Most are doing more than "surviving". You will be able to enjoy yourself again, Jt.
Hi jelly tot, and welcome to the place none of us want to be.
The only thing I'd add to all the great advice you've been given already is to ask what type your BC is. You may well know this from your primary BC diagnosis, and it is most likely to be the same, but it might not have meant so much to you with a primary as you tend to get on with the treatment that you are basically told to have and tend not to question anything. After all we all hope that's our only brush with BC. Once you get a diagnosis of secondaries i have found it important to know exactly whether my BC is hormone positive and/or HER2 positive as this will impact the treatments that are available to you. From what you have written it sounds like you are HER2 negative (as you haven't said that you have had Herceptin) but you've not said if you have been on a hormone treatment since your primary BC treatment. Although your oncologist will put you on the best treatment for your type of BC I have found it helps if you are researching future treatments or reading newspaper articles about new treatments whether they are appropriate for your type of BC. You will inevitably get well meaning friends and family saying they have read such and such and why aren't you on it, when in fact it's not right for your type of BC.
The other thing is to ask when you would next have a scan - which they will do at some point after you start a new treatment to check how you are responding, normally every 3-4 cycles of whatever drug/chemo etc you are on initially.
Over the 9 or so years I've had secondaries (bone initially then 5 years later liver as well) this forum has been a lifeline. You are connecting, and making friends, with real ladies going through the same things as you are who understand completely the fear, the shock and also help with all sorts of information especially things like what side effects you can expect from which treatment you are on and what helped them with them. I feel like I'm tapping into the knowledge of many oncologists as we all go to different hospitals around the country and share what our own oncologists say to us, especially when we start a new treatment. I have learnt from here recently that I don't necessarily need steroids with my current chemo, however I have been prescribed them at my local hospital. A lady on the same regime as me who is at a leading cancer hospital has told me you don't need them, unless you have really bad side effects from the chemo, which I don't, so I now tell the chemo nurses not to give them to me - which helps with the normal lack of sleep that steroids give you. So I've managed to bypass one of the side effects just by learning about things on here.
Sorry, I've rambled on a bit! Please ask any questions that might pop up before your appointment and also do come back afterwards if you have any more, one of us is bound to be able to help.
Agree JT! Take someone with you! I was a mess and couldn't remember half the things I wanted to ask. Speaking with my husband between diagnosis and onc appointment meant that when we went in he had an idea of what I was scared/wanted to ask. Plus it helps process the info and it means that when other people ask there is someone else that can answer - I was an emotional mess and it helped having him as my 'speaker' 😉 - try to enjoy the sunshine (at least its shining in the west!) ❤️❤️
Jt- Please take someone with you, is the first thing. You will be surprised how much info you actually miss otherwise - just because of the hugeness of it all! Also take a notepad with your questions, and spaces between for the answers (you won't remember). Get your support person to write down the answers if they are willing.
3 questions I would suggest are:
1. What are my options? - don't just take the first thing they offer without at least asking about your choices.
2. What about side-effects of the treatment you are suggesting? - knowing that could help you make up your mind if they offer an alternative or two.
3. How often will you see your Onc?
Two things to note - DON'T ask your Onc things like how long you have got - they probably (if they know their stuff) won't answer you, but it's really best not to ask (I haven't - I'm 60 this year, and virtually 3 years in with mets and I fully intend to make the Government pay me my pension when I hit 66!). Secondly - Google with extreme care, if at all!!! I can't emphasise that last one enough.
Thats all I can think of at the moment (at 9.50pm), but I'm sure someone will be along shortly with much more useful suggestions than mine.
Hugs, and best wishes. Please keep in touch and let us know how you are doing, and what happens on Monday. Barton.x
Thank you all, so pleased to have found this forum but what a sh1tter that we're all here hey?!
What would be really helpful is to know what questions ask my onc on Monday. I don't even know where to begin at the moment!
PMOL, You're doing great! It's not easy getting our heads sorted! For me one day I just decided I was tired of crying and wasting time! I still have my moments!! FF
Hi Jellytots 👋🏻
Yeah, it sucks, it hurts in places that we didn't even know we had! My primary was in 2012 (35), had lumpectomy, chemo and rads. All good until my last scan where something was not right (although had no symptoms!) the bc had come back 😔 After the ct and bone scan was going straight for masectomy but doc wanted to see me before and told me that it'd gone to the bones 😢 (Now 39).
until they told me the treatment (mine is hormonal based so they've given me Zoladex (injection 1 month), letrozole (daily tablets) and what we like to call bone juice denosumab (injection 1 month) and saw the onc didn't know whether I was coming or going or what the prognosis was...
the girls here have been amazing - chatting at 4am when i wouldn't be able to sleep; answering questions about side effectss or just knowing how you feel.
it isn't fair by all means just make sure that you talk LOTS with your family and friends, dont be scared to cry, shout or kick something (my bedroom door has a boot hole at the moment!). You will feel normal and then you'll be in tears; but just make the most of any offers (find myself being spoilt by acquaintances let alone my family!) of help or company.
we are here if you need us (3 months ago I didn't think I'd be able to give someone else comfort!!!) ❤️❤️❤️❤️
Jellytot, Welcome! My you are very young to go through this! Not fair! This is very scarey and overwhelming! We have all cried our buckets of tears. It does get better and you find a way to pull yourself together and move on. So go ahead scream, rant, cry then try to find something you enjoy that can put you in a happy place even if for a few moments! When you get a treatment plan started you will feel more in control and it will help calm you down. I'm older too at 62. My primary was at age of 41. At 51 I was coughing a lot, had pneumonia and that's when we found the Mets camping out in my lungs! Here I am though 11 1/2 years later.
Wendy, It sounds like you have improved with your emotions! Having the plan really helps! It will be difficult when you go for your scan to see if treatments working. Waiting for the a n seeds is difficult and we call it scanxiety. If yiur scan shows improvement or stable you will be excited. You will then feel mire comfirtable.Until then keep busy.
Suze57, Letrozole killed my joints. Especially my knees! Within 2 weeks of taking it I tried using crutches. The painwas awful! Crutches and I didn't work. My arms had huge black bruises from them! It took a long time but after about 6 months the brainwashed enough that I wasn't in rears every day. I did end up on oxycondone. I only took it onmy work days. It is a low dose and I chased it down with 3 advil. I was still in pain but could at least walk without crying. I work at out local senior center so I blend in with my limping and slow pace!
Good luck to the 3 of you! A big hello to everyone else! Hugs! FF
Hello jellytot, welcome, but sorry you have had to join us. I understand how hard it is to receive a secondary diagnosis. Believe it or not (and I expect everyone else has already told you this), it does get easier with time and some sort of plan.
You can come here any time with any questions, and we will all try to help. I'm sure someone has already said this much better than I just did, but I hope the repetition will help to reassure you. I'm so sorry you have had to go through this at such a young age (and anyone else who is young).
Well done, Suze, you deserve a rest. I think most of us tend to struggle on for too long (hold my hands up - guilty as charged) and end up causing more problems. Hindsight is a wonderful thing - looking back I can't count how many times when I carried on at work when I really shouldn't have. Carolyn said it best the other day - we all want to just be normal again.
Hugs, and take all the time you need. It sounds like your work colleagues are looking out for you.
Hello Jellytot. Welcome to the forum. I'm a newbie too having been told about bone mets three weeks ago. It's very scary but there are lots of people on here who will support and help you. Between them, they've had most of the treatments and can tell you what to expect. Xx
I can hardly believe I'm writing this. I was diagnosed with bone mets yesterday to my ribs, breast bone and two hotspots on my left pelvis and right shoulder. I'm only 33 😢 I had my original primary at aged 28 and had chemo, lumpectomy and rads. I see my oncologist on Monday to get a plan but it sounds like they will be starting me on rads. I'm so shocked, overwhelmed and sad. I have a million questions but no idea where to even begin. Please tell me there are brighter days xxx
Not sure how much aching is the slipped disc or whether some of it is the Letrozole