Hi, not sure what I am looking for by posting this. Everything seems to be up in the air with no real answers. I guess I’m looking to see if anyone else is living with a similar diagnosis that I can chat with and ask questions to see if what’s happening is normal. Apologies for the long post, I don’t really know the abbreviations that you all use here.
Background: my mum was diagnosed back in 2006 with multifocal infiltrating lobular carcinoma grade 3. She was node positive, ER positive, but Her2 negative.
She underwent a mastectomy, FEC 75 Chemo, radio therapy and then on to arimadex for 5 years. She had the cold cap and her hair thinned but she didnt lose it. During the chemo she developed blood clots from the picc line in her arm and had to have a line placed in through the neck and was then administered chemo through the line which came out of her chest. she had to inject with clexane for 6 months to clear the clots. it was during this treatment she developed an abdominal hernia which has since become fairly large.
Her 5 year check up came up back in March 2012 and was told to come off all meds. when asked if she had any other concerns she presented with this:
In October 2011 she had the flu jab for the first time. She said a few days after this left her with a funny taste in her mouth/rough tongue. A few days after this she came down with what she thought was a sickness bug as it lasted about 5 days and she felt better but the funny taste and loss of appetite remained. In the months nov and dec she had 1 or 2 odd spells where she was sick once but due to the lack of appetite was losing weight.
Since then she had lost a fair amount of weight but her sickness spells had started to increase, in this time she’d delveloped a slight cough. When she mentioned this at her 5 year check the surgeon said it needed investigating due to her history of the breast cancer.
She went for a CT scan in early March to be told she had an enlarged lymph node in her stomach, which she then had biopsy’d. That came back as cancerous or whatever the correct term is and was told she had nominal amounts in the nodes under her other arm. After then having an appointment with the oncologist she was told she has this diagnosis of metastatic breast cancer but also paraortic lymphadenopathy, compression of the ureters, mild bilateral hydronephorosis, left axilla, small nodule in the long with minimal pleural effifuision. I don’t fully understand what all this means but I did briefly look it up to get a rough idea. Any help would be gratefully received.
She has had her first session of chemo about 3 weeks ago and is feeling really quite rough. They have postponed the next dose from today until next week and will reduce it by 25%. She is being sick still and this had increased during the early week after chemo. She has tried lots of different types of anti sickness tablet but is still being sick at least once a day now ( browny liquid). I’m thinking anti sickness won’t really work as its not treatment related but nobody has really looked into why she’s being sick. They just presume its the cancer. We went to see her last week and I was really shocked at the state of her. Shes still not really eating much, shes slightly unsteady on her feet. She really isn’t with it, mentally she’s changed. She’s forgetful and almost with drawn herself from normal day to day living. I almost want to shake her out of it as I’m ringing every day and making her get out of bed and get dressed. I just don’t know whether this is normal as its still only really been 5 weeks since she was told the final diagnosis to now. First time round seems a walk in the park to what’s happening now and we are at a loss as to what to do for the best. I am not local to her otherwise I feel Id need to be there every day just to get her out and about.
Many thanks in advance xx
Hi cla1re
Sorry that you haven’t had any replies yet. I don’t think you get onto ‘latest posts’ until someone replies to your new thread. This is bcc’s new format and there are still some glitches. Anyway hopefully after I post you will go on latest posts and lots of the ladies here who have an amazing amount of information and advice will get in touch.
You don’t say if your mum has anyone at home with her. Is your dad around to help her?
It does sound as if she’s having a pretty tough time of it. Being sick every day and not having much appetite is going to make it tougher for her to cope with the chemo. Have you thought about seeing if there is a Macmillan nurse who can come and visit her at home? Her local gp surgery will know if there are any who work in the area. They are brilliant at helping with all the side effects that people with cancer or other serious illnesses have to deal with. I didn’t really get my pain meds sorted until I met with my Macmillan nurse. I was very anti seeing her as I thought it was only for people who were about to die but she’s been great and we don’t talk about death at all!
I would be careful about making too much of a thing about her getting up and dressed every day. The tiredness that people get from chemo and cancer is sometimes quite difficult to describe to someone who hasn’t experienced it. I know that it is important to try to get some exercise everyday but occassionally just going from the bed to the bathroom or walking downstairs to the kitchen and then back up with a cup of tea can be more than enough - when I was having a pretty heavy chemo a few years ago I found that some days I could walk to the park other dayjust oils barely walk round the garden. Towards the end of my chemo I could hardly even get downstairs without help. I did get better after the chemo had finished and I gradually built my strength back up again.
There is a place in Bristol (the penny Brohn cenhaver hat does courses for cancer patients and their carers. You don’t have to be living with her to go as her carer. They will do a lot on how you can support your mum. Maybe if and when you mum is feeling a bit better you could go along to one of those with her. Have a look at their website when you get a chance.
Best of luck to your mum
Keep in touch to let us know how she is
Hugs
Melissa
Thanks Melissa for kindly replying. My brain feels so frazzled by all the thinking and talking with my dad about what’s going on, I can’t actually think straight myself now to be able to recall so accurately.
My dad is at home with mum but feeling, like us, very frustrated at the level of support she’s/they are getting. We feel we are trying to to diagnose what’s happening to her but of course don’t really know.
Today she had a councilling appointment and they went along but not to sure what happened but after chatting with a few people about what’s been going on a nurse got involved who promptly took her to a&e where she was put on a rehydration drip and is now there for the night undergoing a few more bags of fluid. Hoping this will improve her mental state and her general well being.
She has a palliative care appointment on Friday. Her doctor refused this initially and only after her onc appointment last week and them listening to how she’s being affected they have referred her. I’m hoping they will be a great help. I’m assuming this is a McMillan type thing. I’m hoping they will be a great help to everyone involved as after that we’re not to sure where to turn.
Shes not in any pain. It’s this sickness side of things that’s her main issue. They provide anti sickness pills but hey don’t work when she’s throwing them back up. She’s been receiving injections the last few days but the doctor initially refused those. It’s a vicious circle. Not eating and drinking much but then being sick at least once a day. She has been given lots of pills to take but I guess when your being sick your body isn’t getting a chance to absorb them so the symptoms still remain.
I just want her to get through the treatment so that she has a chance of at least reducing the cancer she has got and can get back to a ‘normal’ way of living. She’s never really been Ill until now! Even the first time around she was so much better in herself? It’s not nice seeing and hearing what shes like. I feel helpless here really but with a young family, boys 3 & 5, I can’t just take myself off for days to be there.
Thanks for reading my ramblings x
Hi Clare,
So very sorry to hear about your mums dx, just wanted back up what tillycat has already said, chemo’s/treatments do affect everyone differntly, even at my age (44) the fatigue gets too me, it is really hard to describe but its like your legs are lead weights and you put all your energy into lifting them, its totally consuming and utterly exhausting, so I can really sympathise with your mum on the tiredness fatigue, I basically rest when I feel like this otherwise I end of extremely dizzy and faint. I can also relate to the sickness as I still suffer with migraine/sickness and throw up when I am suffering, I would push to get an anti-sickness med injected if possible as she is unable to take the anti sickness med by tablet, I think the key is to stop this sickness then she might be able to regain her composure and build herself up. Its so hard dealing with all of this, you don’t mention how old your mother is but I believe it must be so hard on the older ladys affected by secondary breast cancer, like I said before I am 44 and just about tolerate it can’t imagine what it would be like to be elderly or older and have to deal with this.
Hope she gets some relief from the awful sickness soon and can resume feeding and drinking by herself again.
Thinking of you both
love and light
sarahlousie xx
Hi,
So sorry to hear what a rough time your mum (&the rest of you) are having. I haven’t got any advice I’m afraid but I hopeothers will come along who can help.
I’m glad your mum is in hospital having rehydration treatment as that in itself should help her feel a little better.I hope the palliative team are good and it may be worth mentioning that the Dr hasn’t always been aminable to trearments etc so that they can make sure the DR knows whatthey recommend in terms of drugs etc and hopefully he/she will then be more helpful.
It is often a good idea if someone can go to onc appts with your mum as it is easy to forget to ask things or to remember whats been said! so it’s easier if there’s more than one of you! I always take my partner.
I hope things improve for your mum and I hope you can all get some answers and some help. Please do keep using the siye, it is a bit chaotic at the moment but there are lots of lovely helpful members here. You could alao ring the helpline I’ve heard they are very good. With best wishes, Julie
Hi c1are,
So sorry to read of your concerns for your mum. It must be so worrying when it is not easy for you to be there, when you have a young family to care for yourself. It does sound now as if things are getting resolved. If indeed the palliative care people she is being referred to are macmillan nurses then you will get a lot of very good help. One of the things I found a great help was their willingness to get involved with hospital, gp etc. and you should find help there if your mum is having problems with gp not co-operating.
You need to make sure someone is making it clear that your mum’s nausea & sickness was going on before she started on chemo. I noticed you said that part of her diagnosis said she had bilateral hydronephritis and I read somewhere of a lady who had this and many of her symptoms were the same as you describe your mum having - the nausea, sickness & headaches and lack of appetite. I think sometimes, especially if we get passed around with different oncologists treating us they sometimes lose sight of bits of our diagnosis and we need to take charge of that and remind them sometimes - asking the right questions etc. This of course would be difficult for your mum to do by the sound of it which is why it is important she has someone with her and for them to write down questions they want to ask. Has she been given the name of a secondary breast care nurse because they will, if asked, attend appointments within the hospital. If mum is having problems eating and drinking, I know at the Royal Marsden where I go they have dieticians and if her hospital has then perhaps you (or the macmillan nurse) could ask for them to get involved with her care.
I hope once mum is back home, with palliative care involved, and a bit of liaison between various people involved in her care that things will start to improve. Do let us know how things go.
Dawn
xx
Thank you ladies for all your replys. It’s nice to be able to speak with others, which helps me to understand what’s normal and what’s not. You ladies are fab :0)
My mum is 63, prior to this bout of cancer, has always been fit and well. We don’t think the fact she has a large abdominal hernia is helping her either and that this chemo is so strong. If she hadn’t been being sick prior to starting the chemo, I think her body may have been better able to handle the effects. I’m hoping to hear today that she has perked right back up and I get some of my old mum back.
My dad goes with her to all appointments but I think he’s now getting confused by what’s going on he’s not thinking straight either. Especially as he is also having to look after her whilst at home.
Will keep you informed when I know more news. Thank you once again x
Dear C1are-uk, Just to say I am thinking about you at this difficult time. I am about the same age as your Mum and have bone mets and I am on chemo at the moment. I have been having treatment for Bone Mets for 13 years now. I have 2 daughters who have lived through all the BC stuff since they were young girls. Just to say I hope your Mum gets the proper treatment for her hernia nd everything else. It is good that you wrote your thoughts on here and we are always here to listen. Don’t forget to look after yourself too. Love Val.
Thanks ladies and you to val for your comment. Spoken with my dad and it now turns out she’s got a urinary tract infection so still in hospital being treated with antibiotics. Not sure if they are doing anything else but hoping that’s going to bring her back to her old self when she’s got uti sorted x