Don't want to fuss

Ask our Nurses your questions
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Hi. I’m wide awake, day 6 chemo. As many on here know, I’ve had a very rough road since diagnosis. I had one stop breast clinic tests back in December, diagnosed with 1 tumour idc of about 2cm. After lumpectomy, lymph nodes were removed, plus i had 2 further ops, removing further tumours found in cavity shaves. Very nearly 10 months on from initial biopsy, i am 1 cycle in to chemo, still with a large area of idc that they have not yet removed. I will have a masectomy after chemo.

PALS have helped me speed things along. I got very frustrated after 3rd op, when the radiologist came back from an 8 month late re-examination of my original mammogram and said i needed more biopsies.

However, i now lie here pondering if my prognosis has been affected by all of this and whether the cancer they left behind is spreading.

My PALS person has been great. She suggests that their work is done but that i ought to go through official complaints to get answers in writing. I have received excellent care in every instance, except diagnosis and absolutely do not want to get anyone in to trouble. Should I go forward with the complaint or not? All i want is a few questions answering, so I can stop wondering what ifs and whys.

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Hi, I am so sorry that you have had to go through all of this. I am pleased that your treatment is underway now and I hate the children ext of the care has been good.

I personally think I would go ahead with the complaints. I think making a complaints can help to endure that services improve. But more than that it does sound like that there were errors so you have every right to complain

Obviously you need to do what is right for you. I wish you lots of luck.

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Hi, you should definitely raise a formal complaint as something has gone wrong. The trust need to be aware of this, investigate your situation and put processes in place to prevent this from happening to others.
I worked for the NHS for 35 years and although I have been very happy with my care, during my career I have seen how things can be missed and the impact this can have. It is sometimes described as the Swiss cheese effect, when several events line up causing a hole (hence the Swiss cheese) and this impacts negatively on the patients care allowing treatment to fall through this hole once it has developed.
I am so sorry this has happened to you, sending my best wishes that the rest of your treatment is uneventful.

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Thank you both. I am not a complainer usually. But something definitely has gone wrong in my situation. I just don’t want to upset anyone as everyone has been so lovely. I just don’t want this to happen to others. I’m also very much in the dark regarding whether my long term prognosis has been affected by all this. With 3 young children, I’m very scared. Plus eventually my sick pay will run out as this has gone on almost a year already. I should have been at the end of my treatment by now, but I’ve technically restarted. X

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Hi @bluesatsuma
Hugs
Please make a formal complaint

Please do not sit and worry about being a whinger, you aren’t and you need answers and to ensure others dont have similar issues or frustrations

Would it help to ask to talk to the team again face to face and have a consultation which is constructive for you?

Keep banging your drum ( as loudly as you want)

Take care x

And apply for PIP. Talk to the cancer advice team at Macmillan

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Hello @bluesatsuma

For what it’s worth I agree with everything everyone has said about raising this with PALS

My breast cancer diagnosis has caused to look at a lot of things differently:

1 If it matters to you: it matters, you need to know what has happened and why, if you don’t raise it you are going to be left with that unanswered question
2 Nobody is perfect and mistakes do happen, pointing them out does not necessarily mean “getting someone into trouble” (big big one for me I’m a lawyer and have spent the past 15 years fearing making mistakes, OK so mistakes made by lawyers don’t necessarily impact in the same way as medical professionals but ultimately we are all human and that is why policies and procedures are but in place to try and prevent mistakes occurring: this why we have to forever answer question name, DOB…. Sometimes procedures fail and a rethink needs to happen)
3 If you don’t express how you feel, no-one else can do that for you
4 You cannot control how others perceive you, I absolutely guarantee you will not be considered a “whinger” for raising your concerns

I really hope you get some answers.

Lots of love
AM xxx

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Thank you AM. I know you’re exactly right. I adore the NHS and we must protect it, but i guess that also means ensuring that it is ran to its best capabilities. If we don’t challenge, then we accept issues like mine for the next person. Xxx

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Hello bluesatsuma

Thank you for posting.

It sounds like you are having a really difficult time. Having several operations and undergoing chemotherapy can have an effect on how you are feeling as you mention it has been a very rough road.

You are awaiting further surgery as there is still cancer left. Chemotherapy destroys cancer cells and is a treatment that affects the whole body (systemic treatment) but you are still concerned about the cancer spreading. You may want to talk with your team about your concerns and hopefully get some answers to your questions. Sometimes it can help to get the answers in writing as PALS have suggested.

It’s good to hear that you have generally received excellent care and that you have found PALS helpful. Nobody can tell you whether you ought to complain or not. As @eb13 says you now have to do what feels right for you.

Having concerns about prognosis is common. No tests can tell you with complete certainty what will happen to you. You can be referred to a counsellor who is trained to help you explore your feelings after your diagnosis or treatment if you think this may be helpful.

We offer a range of free supportive services for anyone who has had a diagnosis of breast cancer which you may be interested in.

Do call our helpline if you would like to talk this through or have any further questions. The helpline team have time to listen, talk things through and signpost you to more support and information if necessary. Your call will be confidential, and the number is free from UK landlines and all mobile networks. The number is 0808 800 6000, (Relay UK -prefix 18001).

If you would prefer one of our nurses to call you. To do this, please complete this form ticking the box agreeing to a call back .

Our usual opening hours are Monday to Friday 9am - 4pm and 9am -1pm on Saturday.

Out of hours you can leave a message and we will call you back when we next open.

Best wishes

Grete

Breast Care Nurse

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