It’s a long time since I’ve been here. Though I do stalk the forum occasionally
Diagnosed March2024 with HER2+, went through the surgery, chemotherapy and radiotherapy and herceptin. Finished chemotherapy September 2024 and herceptin injections July 2025. Currently going through zoledronic acid every six months and next one is next week.
My experience wasn’t positive, bad communication, poor service.
My problem is I just don’t feel well - ever. I am permanently tired and feel generally yucky. Honestly I don’t feel much better than when I was having the treatment.
At my nurse reviews (pointless waste of time) they just say “yeah, it could be chronic.” “do you exercise, that can help” ( yes I do exercise - I swim - nowhere near as good as I was - I could do 100 lengths now I do 80 in the same time. I have a gym programme that I follow too. So yes I do try to keep active. Nurses don’t have any other answers. The one I spoke to last week told me all about her family’s hypothyrodism which wasn’t relevant and just a tad annoyed me as I thought the point of the phone call was about me not her!
I am trying to accept that I will never feel well again. But will I? Obviously I am two years older than when all this malarkey started - I’ll be 63 in the summer so hardly ancient.
From my bloods done it shows my neutrophils are low and have been for the last few blood tests. In fact they’re lower than when I was having the chemotherapy. Nurse says this is nothing to worry about. Not overly worried but is there anything I can do to make them better. I don’t eat processed foods, eat very little fat (due to other health condition), eat loads of fruit and veg. Cook everything myself, don’t use pre-bought sauces, mixes etc.
Just generally fed up.
I was advised by the local breast cancer group to apply for PIP which I did and was successful, awarded lower daily rate till May 2027.
I do have an appointment with the GP for next week
@katkin1 So pleased you have come to the forum, hopefully some good advise will come your way. I think you are trying so hard to look after yourself, going to the gym, swimming and most of all cooking and eating good food.
Was wondering if you have a cancer group in your area, which hold meeting its always nice to chat to others who have been in the same situation as you, and understanding what you going through.
I would say be kind to yourself, meet up with that special friend for a coffee and maybe a nice walk in the park, I know that this is all very easy for me to say when your not feeling great, but sometimes this can help a lot.
Wishing you well, with lots of happiness ahead, keep posting to let us know how you are feeling.
From my own experience and other threads I know that the recovery process can be slow and frustrating and it’s hard to put it all behind you when you don’t feel yourself anymore . You have had a lot more treatment than I have and as you’re still having the Zoledronic Acid infusions maybe it will take a little more time to fully feel like yourself again. It took me the best part of a year after two procedures and radiotherapy though I did have an unrelated shoulder injury as well. You are still doing more exercise than most people could manage - so be kind to yourself as you’re still doing plenty .
I’m a swimmer myself which is what prompted me to reply to this though I prefer open cold water to a pool when I get a choice .
I understand your concern about your low neutrophils and I’m hoping that your GP may be a bit more helpful than your Nurse has been. My immune system has I feel benefitted from the cold water which is also very energising ( you could try cold showers ) and live cultures. I eat sauerkraut and kefir and drink kombucha daily and the only bread I eat is good quality sourdough . I find that I’m getting very few coughs / colds compared to a few years ago despite the fact that people around me are getting them. I also used to feel unwell during the whole of Winter - as if I was almost constantly about to come down with a bug but not anymore . I did have a nasty virus just over a year ago which gave me fatigue and my Osteopath relieved this with cranio- - sacral osteopathy and I’ve found that Yin and Somatic Yoga both help as well . If you don’t fancy any of the above maybe you could treat yourself to a nice massage .
It sounds like you eat a really good diet but it’s easy to get into a rut - maybe you could get some tests done or see a Nutritionist to see if you are lacking in any particular elements or minerals .
Good morning, thank you for your kind reply. I think I was in a bit of a “moaning Minnie” yesterday. So today I have put my big girl pants on. But the bottom line is, I still don’t feel well physically. I can change my mind set, but my body doesn’t seem to follow on!
I do meet up with friends, did on Friday and had an old ladies cackle at the ridiculous fashions in Primark and have planned to see another on Wednesday which will involve much gossip and Les Dawson type heaving of bosoms.
I would love to open water swim - it’s been a goal of mine. When I move to be near the sea that’s my aim, to open swim here I would have to travel too far to make it a viable thing. Funnily enough I have looked at cold water therapy things and may pursue further.
it was when you said you felt like you were coming down with something that hit home - that’s exactly how I feel. I haven’t been ill for ages - even with a cold. I think I was last ill when I was having the chemotherapy and caught covid and tonsillitis and that would have been in 2024.
I have had sacral osteopathy in the past. I don’t eat bread (mainly because I can’t eat butter so there’s no joy in it ). I could go for the kefir
I’ll see what the GP says, though I fear it’ll be another bandwagon of blood tests.
I am currently waiting for some planned surgery and want to be as well as I can, been waiting since before the breast cancer stuff
It is fine to think life has put you in a barrel of shit. Whoever gives you advice qualified people or unqualified alike has no way of knowing what is happening in your body.
Cancer is a disease of molecular misbehaviour and you can’t get a sensible answer out of a molecule.
Even if you eat the most splendid food and do masses of exercise you will not have a guarantee of long and healthy life.
I remember once studying disability for a job I had in social services and the rate of disability rises as people age. So most people who die in their 80s or 90s or older are probably not going to be dancing on their birthdays.
That reminds me that my great aunt Hilda did dance on her hundredth birthday.
She and her husband emigrated to the Great Plains of Canada and took their horses to a spring near where the Canadian Indians took theirs, thus forging friendships with them.
They lived in a large log cabin on their section of land and eventually had a large car too. Their children went to a small school near Calgary.
I do not live such an adventurous life and am not going to reach 100 but I am going to do my best to have a good life and try not to dwell on pain and misery for too long. I also take what others pronounce with a pinch of salt as I advise you to do. Including my advice of course…
Hello Katkin, like you I’ve just started looking on here again after a long break. I’ve had several goes of bc during last 10 years and now been NED for 3 years, but lately disappointed at never feeling as well as I’d like. I’ve been putting it down to age, 71 now, and being battered by repeated treatments, but recently an enthusiastic new GP said she wanted to blood test for all possibilities and my oncologist, who I saw in a routine follow up, said to make sure she included thyroid function. Sure enough it came back as underactive thyroid and now they are looking into dosage of the meds to help this. It ticks lots of boxes for me around tiredness, feeling low etc. So now I have more hope that something can be done. Maybe that’s what your hypothyroid nurse was angling at? Good luck and I hope you can feel better soon xx
Thank you - I will investigate further with my GP - never seen this one before, don’t know who they are so maybe they will look with “fresh eyes.”
The thing that annoyed me was it wasn’t a hyperthyroid nurse - it was one who was doing my review from the oncology unit and proceeded to tell me all about her family’s thyroid problems. She may be right and it is something to investigate further but she didn’t go about it in the correct way. But my attitude towards the unit is poor I know, so I shall try to be nice when I go in today. She also said that she didn’t want me to feel that nobody is listening to me. Well I do feel that way. I have told them at every review I’ve had that I feel permanently unwell and they just say “yeeees, that can happen, oh dear what a shame, try to exercise.” I think if I told them I had turquoise spots on my knee they’d say “yeeees that can happen…………………..” etc. Never seen the oncologist from that day to this (apart from when we met when I made a complaint) - all been nurse led.
Sorry, by thyroid nurse i just meant the nurse who talked about it! I can see why you are so frustrated. Interesting how different hospitals work, my oncology appointments are always with consultant/doctor. I hope you can get some progress soon. Love xx
Can you request to see a Dr. ? I don’t think you could be doing anymore exercise that you are doing by the sounds of it . Thyroid problems ( if that’s what it is ) can be diagnosed by blood tests so you were right about having more of those . Hope it goes better today xx
Hi, I hope you are feeling better today. I have had pretty much the same treatment as you, surgery, chemo, radiology and Herceptin injections which ended in December 2025. I am also having the bone infusions every 6 months.
I wonder if you are also taking Letrozole tablets? I am and have found it really affects my joints, more so over time. I understand it can also affect your mood. Like you I have been trying to do exercise and completely get the feeling that you are not the same as before. It’s a huge thing for our bodies to go through.
Hi katkin1 - You mentioned your neutrophil count is low and getting lower with recent blood tests. The ‘just don’t feel well’ description is exactly what happens when you have low Neutrophils especially if they continue. I have LGLL (Large Granular Lymphocytic Leukaemia) and have injections which increase my neutrophils because once they are extremely low you will be open to infections as there won’t be enough neutrophils to fight off infection. Try asking your Nurse what the neutrophil count is as it should be between 4.0 and 7.5. It’s hard to cope when the blood count is low - I’ve recently had breast cancer too then surgery/radiotherapy so I’m now injecting weekly as my LGLL treatment. There’s nothing worse than feeling just ‘not right’ for a length of time. It may be a temporary low neutrophil count but I think may be worth mentioning to your GP. Hope this helps and that you feel brighter soon.
Hello, I’m not taking letrozole. I have come to the conclusion that I am just prone to bad moods - obviously always been a bit of a cow . I think my body is just worn out!
Hello, that’s very interesting. My neutrophil level is 1.8 - the nhs app thing says should be between 2.0 and 7.0. basophil is 0.0 - normal range is 0.0 - 0.1, monocyte 0.3 - normal range 0.2 - 1.0Total white cell count is 4.1 - nhs app says normal is 4.0 - 10.0 so I’m scudding along the bottom of “normal.”
I haven’t been ill at all - was last poorly in summer of 2024 with tonsillitis when having the chemotherapy. I just don’t feel well. So perhaps the low neutrophils haven’t affected me particularly?
Saw a Gp today - she feels it’s still the effects of the treatment and is not worried about the blood counts. She is redoing bloods for thyroid, iron, B12, Vit D and some others. I’ll see what comes back from those. She was very pleasant. If nothing else it’s all documented.
Hoping all goes well for you too. Thank you again, our reply and thoughts are very much appreciated
Thank you - saw a gp today and talked things through. She feels it is the aftereffects of the treatment still having an effect. Will have further blood tests to see if it’s thyroid or something simpler to diagnose. Will see the results of those and go back if necessary.
) just my body refuses to follow through.
- obviously always been a bit of a cow 
. I think my body is just worn out!