I just need to let out, i have no partner suffering grief still)and my closet person lives miles away. Tht aside i am not feeling connected or supported by the breast surgeon or the nurse team, i feel like i shouldn’t be using there time or they are not there to answer my concerns or questions, which i know maybe silly or irrelevant.but where are you supposed to go? After a lot of hospital stays during chemo, it stopped and now just feel like im swimming in the dark, unsure about follow ups, whats happening in body normal. That on top of decisions about normal life, when to return to work,hiw the next or ongoing treatments will effect etc etc i just want to stsy in bed so tired. I wont as i know that wont be helpful and im trying to take each day and each part one by one.
The team just feel like they are so unrecpective, its hard to get information or transparency, the accuracy of the little information i have is poor, saying i had things done that i didnt…
the gp, hospital drs and team all seem to have different info thats not shared between or with me.
Sorry for the jumbled long winge, i just need to say it today somewhere. As dont know what to do.
Dear @trix1 , I am sorry you are feeling so low today. You’ve done the right thing sharing your very understandable feelings with us. Rant away! This is a warm and encouraging space in which to do so. If you need answers about things from your medical team do call them as often as you need. You are not bothering them. You are keeping them informed of your situation and seeking help from medical professionals which is as it should be. As someone who also went through cancer alone (widowed with no children) I also needed support and found it in the following places, some of which may hopefully be of help to you at this difficult time: I rang the nurses at Breast Cancer Now 0808 800 6000, and also the Macmillan helpline which is open at weekends 0808 808 0000 . The Breast Cancer Now ‘Someone Like Me’ service can also find you a volunteer to talk to who is in a similar situation. You mentioned a good friend who is far away…one of my friends called me every evening. She was a very good listener! Perhaps your friend can do this for you even if too far away to visit? Another friend sent me lots of pictures of her cats because she knew I loved them. If you have a local cancer support centre nearby, or maybe a Maggies centre you will find wonderful support there. I can also recommend Penny Brohn charity. They offer a range of supportive services which I use often.
As you are needing more clarity and information about your treatment it may help to speak to the Patient liaison service PALS at your local hospital who can advocate for you and help you to get the answers and support that you need from your treatment team.
Sending love and good wishes from Tulìp x
Hi @trix1 I would like to second all of the excellent advice that @Tulip29 has given you but in particular would urge you to go to a Maggie’s centre if there is one near you - you can find out if there is here Our centres | Maggie's. I know it can take a bit of courage to step through the door when you are feeling low but it would be so worth it. I also speak as a widow with no children but I had wonderful support from my older brother and his wife, without whom I would have been in a parlous state particularly after surgery, so have sympathy with how you’re feeling.
I’d also recommend Maggie’s if you can get to one.
I walked into mine, a lovely member of staff made me a cup of coffee and I burst into tears while we were chatting - she wasn’t phased in the least.
There’s lots of quiet space where you can be on your own in peace ( but not alone, if you know what I mean) and they have lots of specific support to offer.
Mine is an hour away from home, but is worth the trip
I’ve also felt abandoned by my BCN. I have been feeling very low and tearful, probably due to lack of sleep from a combination of stress, hot flushes due to coming off HRT and hormones playing hell with me! Also, glue has come off lymph scar but not breast (after almost 4 weeks). Exercises becoming more painful due to pulling right through breast that is new (cording?) and ibuprofen has been upsetting my stomach. I phoned BCN for an appointment really needed to see someone face to face, be reassured and told whether my scars were healed enough to start massaging tight areas and shown proper techniques. Instead I was told to try co-codamol or ibuprofen gel and regarding massage, ‘just rub it, you can’t do any harm,’ and keep doing your exercises’. No appointment given just a cheery, ‘Is that ok?’ It wasn’t but I felt I had no choice other than to say yes. I felt brushed off and that I was making a fuss over nothing. I couldn’t stop crying afterwards and I now feel like I can’t phone again.
I went to my nearest Maggie’s for the first time 2 days later and spoke to a nurse there who couldn’t have been nicer. She listened and gave me time, kindness and reassurance. Everyone I met was lovely and welcoming and I’m going to my first ever yoga session there tomorrow. With all they have to offer, I would definitely recommend Maggie’s for anyone looking for support.
Welcome to the forum, we are here for you with love and support. So sorry your feeling let down by your breast cancer nurse, they are usually very kind, understanding and there to support you,
I think you have a few things going on and need reassurance, also need as you said a face to face appointment. Please call your breast cancer team again, don’t think your are being a nuisance because you not, explain how your feeling,
Also the breast cancer nurses on this site are very supportive, kind and understanding, you could give them a call they will be able to point you in the right direction. (0808 800 6000).
Wishing you well with health and happiness going forward. Please let us know how you’re getting on.
Thanks, Tili. I’ll try my BCN again when I’m feeling a bit braver. I really appreciate and feel quite emotional about the amount of genuine support I’ve had from other places. You do marvellous work and help so many people. Xx
