Have to have a rant. Went for a check before my second chemo cycle. I’ve been dreadful throughout and only just started to feel better a few days before the next cycle. At its worst, I had lost 12 lbs in about 10 days owing to a combination of eating little, sickness and diarrhoea. As a result my Macmillan nurse arranged an early appointment with the oncologist who decided for the next round to reduce the dosage and give me lots of extra meds. Ok still dreading it but hopefully it may not be as bad.
Anyway had to go for blood tests and a pre check. The nurse asked if I had been able to do my normal chores. I explained that for most of the time I just felt too ill and one day spent most of it in bed. Whenever I felt up to it I was doing whatever I could. The nurse said I shouldn’t just sit around but should do normal tasks!
As my husband said, how did she know what she would be able to manage and in any case, as the doctor had acknowledged, I am 74 and probably the dose was too high for me though right for my height and weight. I am still irritated about the comment hence the rant. I listen to my body. If I’m tired, I sleep. If I’m not up to doing things I don’t do them If I feel well I do as much as I can.
A bit bizarre to ask about chores and very judgemental - I’m angry on your behalf . She didn’t have the right to say that. Sending love and best wishes for your next treatment xx
I couldn’t believe it. The other nurse was going through questions to see how my chemo had affected me. I was pretty dumbfounded and it was afterwards that I became angry. The more I thought about it the more angry I became
@jom2 you’re right to be angry! I thought they said to rest when you feel you need to, listen to your body and don’t over do anything you think is too much! How dare she question it! Honestly we are going through enough without unhelpful comments like that! I think that will make all of us angry!
All the best for your next round - glad they’ve adjusted it hope it goes ok x
@jom2, sometimes people don’t think before the speak or use the wrong turn of phrase.
I wonder if she would have said that to a 74 year old fella. There’s an assumption that as a woman you would do the chores. If you’re in a relationship I’d like to think these days chores are shared or if one of you is unwell the other steps up.
I was asked if I’d managed my usual activities such as washing and dressing and I’ll admit there were days I felt so crap I didn’t shower, and if I did, it would take a couple of hours to recover. At times I felt lazy but reminded myself that I’d had restless and disturbed nights due to steroids, bone pain from filgrastim injections and trips to the loo.
May be just a poorly worded question and would be more helpful to ask how you were managing and perhaps some kind words of encouragement to keep as active and mobile and mobile as you can.
Interested to find out what you get asked next time.
I keep a list of people I would have liked to have poked in the eye…
During Covid Macmillan lost 40% of their donated income and have been going through a structural reorganisation that has lead to the loss of several of their services as a result of the drop in their income. There is no excuse for the judgemental attitude shown by that nurse and it just sounds as though they are doing this work as a stop gap to being famous, rather than a career nurse. I found the information published by MacMillan during treatment to be patronising in the extreme, badly written and updated infrequently, often raising questions from my oncologist when I asked him something following reading it in their pamphlet. I was glad when I found Breast Cancer Now who assume that whilst we have breast cancer we haven’t lost our brains (even if the car keys are in a very safe place with the brain fog!). The contract MacMillan has with the NHS is a strange one and it just appears you got a bad egg of a nurse. You do what you can when you can - and that includes ranting, dancing, talking to the wall and getting on with life.
Hi, I’m so sorry for you that the nurse said that. Can you mention it to your macmillan nurse and she can speak to the nurse that said it? It’s unforgivable to say that to anyone going through what you are.
I’m also 74 and I know things feel different at our age. I had triple negative bc a year ago and should have had chemo but they decided against it completely because of my age and other health issues, but even the radiotherapy wiped me out, and I’d have hated to have such an unsympathetic remark made to me.
Most of the nursing profession get it right, but some do make us feel bad. I have had a lot of pressure to have a double mastectomy because I have brca 1 gene variation , and I have said I don’t want it. An oncologist examining my breast in March after my radiotherapy when I found a lump ( which was incidentally benign ) said very matter of factly to me ‘I see you’ve refused risk reducing double mastectomy. We can do it here for you ‘. He really upset me, and I burst into tears, while he just stood with another nurse or doctor and said nothing. All so humiliating when one is sitting topless too. Some medics dont seem to think before they speak.
I really hope your new regime is more bearable for you and that you only have supportive helpful staff in future.
It was a nursing auxiliary in fact. The nurses at the clinic said, as I thought, you just have to listen to your body. The oncology team have in general been very supportive and the consultant completely removed one of the chemo drugs because I had been badly affected and apparently a combination of Docetaxel and Phesgo has been proved equally effective in recent trials. I haven’t found anyone other that one person who hasn’t listened to what I have said and responded sensitively and talked to me as a sensible adult with a brain
The doctor I saw after my first cycle explained that the dosage was correct for my height and weight but although they obviously regarded me as fit and able to take it, at 74 it was a bit much
Thank you for your concerns. I am grateful for the support I’ve received on this forum
Just to say I was ready unwell with my first 4 rounds of chemo.
After a discussion with the oncologist it was decided that the benefits of the next four rounds compared to the effects on me it was not beneficial for me to carry on
Check this out as why suffer if you don’t need to!
I did ask but they said they like to do all 6 cycles!
Tbh it’s the filgrastim that really hits me. The chemo doesn’t cause me much of an issue. It seems all the extras are what I struggle with ( the anti nausea tablets caused me terrible constipation this time round whereas last time I had the opposite problem
Hello Jom2, You have every right to rant and she is in the wrong job. Even someone with the exact dose of chemo you have had would not necessarily have gone through the same side effects as you. I also lost a lot of weight from ten and a half stone to eight in a short time, and whilst us ladies always want to lose weight it was not a good look. I wondered why other people were eating and I was not. Even now (two years later, I am also 74) my appetite is not the same as it was, and I wonder if I had too high a dose. Of course, when I asked I was told it is based on height and weight, but as I lost so much in such a short time I wonder. I. also wonder if they would tell you if they made a mistake. I was told in the beginning things are different now, your meds are tailor made. Mmm really. Nobody but nobody knows what any of it is like until they go through it and then they only know how they feel, so stuff her. They give booklets about the drugs and on side effects, but there is a lot they do not tell you and worse than that they do not know how to fix some of these things. Of course guilt kicks in as I am typing this because the C did go, although I thought that was that, double mastectomy then another op for chronic seroma, drugs for five years and remission etc. only to be told by one of the Nurses and then the Oncologist there is no such thing as remission and the drugs are just supressing it??? I am on Letrozole and Phesgo with quarterly scans and Oncologist visit. So I go between being grateful as in some countries you would be bankrupt, dead or both, and being angry and I am not sure if that is partly the drugs or just me. So, you do whatever it is that makes you feel good, if you want to lie about and do nothing, do it and stuff anyone that tells you anything else, and that is putting it politely.
Thanks Minnie. I am grateful that my oncologist did seem to listen and reduced the dose ( or actually completely removed one of the drugs). Sorry that you seem to have had a tough time. Quite right I’d be delighted to lose several stone and get back to the skinny me I was as a teenager or even a young mum but I’m fully aware it’s not good to lose weight too quickly. At the moment I’m in my bad period, Filstagrim injections hit me for six and this time I have a nasty rash on my hand to boot. Back to the nothing I want to eat.
This forum does help with venting
Best wishes to you and all the supportive contributors x
I too had a rotten blotchy rash on my hands. It was similar to the rash on my face and the chemo acne spots. I was prescribed cetraben lotion to wash my face with. It can also be applied like a moisturiser to hands. It worked wonders for both areas. Container lasted about 9 months. Purchased another from Superdrug. It’s in the healthcare section rather than with the face creams. I seem to have less fine lines since I’ve used it and people have remarked on how nice my skin is.
