I thought I was helping, but just appear to be scaring my mum & at a loss what to do

Friends and family Supporting someone with breast cancer
1

My mum was diagnosed with ILC grade 2 stage 3a end of November 2012. She underwent a single mastectomy with lymph node clearance on 27th December. Histology showed she had a 10cm + tumour. The nearest border was 2cm from the chest wall & she had 2 out of 16 nodes positive. It’s ER+ve PR+ve & HER -/ve. Mum has no spleen so is a much higher infection risk. She is due to start chemo FEC-T on Friday followed by radiotheraphy & hormone treatment. She spent 6 days in hospital post mastectomy due to drain issues.

She has been strong, positive & 100% focused since the day of diagnosis. Initially I was concerned she was blocking things out, but she told me she wasn’t & was just of the attitude “what will be, will be” she however has been in a great deal of discomfort following surgery with seroma & a haemotoma post drain removal. Her pain has been uncontrollable the past few days. She’s had the seroma drained twice in the past week but still has a lot of swelling & pain & hasn’t slept very well for a few days. Mum is normally very tolerant, but this past few days hasVeblen extremely tetchy at things we her family say. She also goth very defensive at an appt with the oncologist this week when I questioned a few things regarding treatments as I was very concerned regarding her potential risks with ongoing drain issues and starting chemo (mum had consented to me being there) and I am an ex medical nurse.

The oncologist was quite rude in my opinion & described my mum as someone he thought was fine to as he put it " be knocked to the floor and then knocked down some more" he also dismissed my concerns stating she just needed to get on with life as normal and not be moddlycoddled by her daughter! I was fuming! I told him I was simply caring and pre-empting issues, but he said he had no concerns and she was gonna have a bright future made brighter! I wanted to smack him tbh, he was rude, patronising and skipped over the risks that he did bother to discuss very dismissingly. She of course felt silly taking the time to read what he was asking her to sign as embarrassed by her daughter apparently making such a fuss! He never discussed serious things like the FEC-T can increase your risk of other cancers at all and instead focused on nausea, vomiting & the usual chemo stuff. His response to my question regarding her still needing active drainage and proceeding with chemo was, it’s a small sterile needle so no I don’t have any concerns!

I have read things on here which state others have had delays if requiring active drainage of seroma fluids to avoid risk of infection. Mum therefore with no spleen in my opinion should delay chemo until at least the seroma is more manageable as otherwise she faces drainage every couple of days and the potential infection risks that entails.
My mum currently lives with me and I’m her main carer, up until all this she has been very fit & active on the whole and is a young acting 64 yr old… I have a pretty stressful job at the minute and find juggling appointments and being with mum quite hard, but have managed to get to practically 90% of appts so far.

I have been ill this past week myself with a chest infection & cold, so have been concerned regarding passing anything on so close to her starting chemo. I have felt quite low in mood and have cried several times this weekend (without mum seeing this). We have had several cross words mainly as she has been very intolerant due to poor pain control. (she is arranging to get stronger pain relief off her doctor tomorrow & hopes to have another drainage on Tuesday when back to the hospital for a pre chemo assessment appt).

Tonight she said in a conversation which ended with her in tears, stating that I needed to talk to someone and that I was freaking her out about the up and coming treatments. I didnt clearly mean to do this, but likewise I think she should be fully aware of what’s potentially going to happened during chemo in terms of nausea, nails, hair, toilet issues and I’ve been discussing solutions tothere’s issues should they arise from the varying answers provided from several people about wht worked for them.

I just want mum to feel safe & cared for & obviously want to eliminate the need for any serious intervention by doing all possible to make life easier. If that means just shushhhhing up fine, but I feel totally out of control and I feel the care staff are not taking mums situation seriously enough to date. I don’t think it helps that I have some insight into medical stuff, as that old saying too much information defo comes into play here! I told mum if that’s what she wants I’ll back off on the infomation front, but I’ve asked her not to proceed with chemo until the drainage issue Is clear.

I so badly want to help her, but it appears I’m her number one issue right now which makes me feel awful. I genuinely just want all to go well for mum, but she said he feels I want something bad to happen?!!! She couldn’t be more wrong, if anything I can’t imagine what I’d do if anything bad happened to her. I love my mum so much, but feel caught between my own worries and concerns which the care team dismiss as if I’m an interfering old goat. I have a younger brother & sister, who live locally. My sister & her partner have been a good support both to mum & me, my brother has been absent due to falling ill the day after mums surgery.

All I want is to help any way I can. I have agreed to no longer discuss details of treatments with mum now, so I don’t freak her out, but it’s hard controlling my inner fears right now and fighting myself and my own fears. Maybe I do need to chat to someone on a one to one professional level about my concerns, I just don’t want to have anything negative on myconsidering case it negatively affects my job. I can’t take any time out from work either as much as I’d like to, due to poor staffing & my responsibilities.

I have no idea what the best thing to do for the best is, but hoping the way I’m feeling is a normal response. I know I need to keep details in check now so I don’t scare her, and I know I need to step back a little and let her be. I work full time so calling helplines is something I’m only going to be able to do next weekend really as no privacy. I just feel so stressed out and worried and lost right now. I wish I could jump forward 9 months & this whole thing just be a memory and mum be safe again.

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Hi Jessaqua

Welcome to the BCC forums, I am sorry that you and your Mum are having such a difficult time, as you say in your post, it may help if you can talk this through with someone and our helpliners are here weekdays 9-5 and Saturdays 10-2 on 0808 800 6000 and they are here to offer you further support and a listening ear.

Take care

Lucy

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I have contacted a local cancer charity this morning after posting this who offer a counselling service and will see if they can help me control my fears. I have also told my mum (who has woken up again in agony, and now I’m gonna have to leave for work) :0( that from now on I will do my best not to overwhelm her with too much information unless it is something she brings up herself. Just wish I could be here not working, but so short staffed in work and unable to take any time off until Friday for her next appt which is her first chemo appt.

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Hi Jessaqua,

My heart goes out to you, both as a daughter supporting a mother facing life threatening illness and as a woman who has been through treatment for breast cancer. My mother’s story is very different, as her illness was not cancer, but it was incredibly hard watching her make decisions and not being sure if she understood the implications or risks, and knowing that she would not ask the questions to which I wanted answers. I had to work hard to keep reminding myself that it was her wishes that mattered, and that if she preferred not to know things, that was her preogative. Someitmes I just had to walk away in order not to argue with her.

There is a lot in your post, and I’m not going to attempt to respond to all of it, but I would note, as a person who has been down this road, that the early days are the hardest. We fear we are going to be dead in a few weeks, no matter what the doctors tell us. We hear only the bad news, the risks, the side effects (epsecially the very rare ones). At the same time we feel we have to be positive and support the people who are tyring to support us… Fear affects us all differently, but can lead to fall outs. Try not to be too harsh on yourself, I’m sure deep down your Mum knows you have her interests at heart and that your love for her is what motivates your concerns.

I’m sure that the hospital will take excellent care of your Mum, and will adjust or delay chemo as needed to keep her safe, and as well as possible.

You may want to speak to someone at the hospital about the oncologist’s manner, which does sound disturbing.

I don’t know where you live, but in many areas there are places and networks for people affected by cancwr, including relatives and carers. Perhpas there is a Maggie’s centre or a Haven near you? Failing that many hospitals have MacMillan advisers who may be able to help.

Do consider ringing the helpline, they are brilliant (if sometimes very busy).

I hope all goes well for your Mum. It seems impossible now but the nine months will whizz by and yuo’ll be the other side of all this before you know it.

Gentle hugs, and hope you are soon felling better yourself.

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Hi
I had some difficult appointments with my oncologist and found ringing the helpline at BCC excellent. They repeated what the oncologist had said very simply and explained more fully what was happening. It helped me to have a more positive and constructive relationship with oncologist.
We have to trust the doctors at the same time as trying to make sure we have given them all the information we can. we are trying to understand something they have spent years studying.
I hope you can focus on other aspects of life and enjoy time together doing things you like.

Ps filling in a website request to the helpline enables you to contact without the need of phone class at work.

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Jessequa - you can email ask the nurse with what you want to talk about and when you are able to talk - they will call you back. I did this and it was very helpful. It means you can get around the problem of the line being constantly engaged and also your problem about only being able to talk when not working. I would really recommend you try the helpline. It’s so hard in the first few weeks. I can’t compete with the lovely RevCat for sensible advice but I know how easy it is to get annoyed with people who are just trying to help, even though I don’t want to - no-one knows how to do this and we all need help. Good luck, xx

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Hi Jessaqua,

Here’s the link to the BCC Ask the Nurse email service. I hope you find it helpful.

breastcancercare.org.uk/breast-cancer-services/ask-nurse

Jo, Facilitator

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hIYA - difficult time for you (and your mum!) I think what jumped out at me, from your post, was that everyone handles things differently, and your mum will find out what she needs to know WHEN she needs to know it. That sounds like it maybe a different time from when YOU need to know it! So, in a way, she’s right about you needing support… I hope you get some… I thought I was a “bring it on and tell me as it isi” kind of a person. And, to some extent, I am… BUT… I noted with wry amusement, it was months and months before I even was in a place to think about my prognosis. I was so busy dealing with each thing as it came my way… and the best gift you can give your mum is to let her do it HER way (which is easeir said than done!) I hope you can come on here and chat… and find answers… and I hope the above link proves helpful. Bless you for caring so much…

Jane

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Hi,
Think my favourite saying is it’s a fine line we cross…everyone deals differently with a diagnosis and some do not want to dwell or think about technical stuff, it is frightening enough just being told you have bc.
Your loving kindness shines through your words and your support will be invaluable to your Mum, always remember everyone is different and have to deal with things their own way.
Hope everything goes well for your Mum, do keep posting and lots of hugs to you xx

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I am astonished that they are starting chemo so
soon after a mastectomy. My chemo was originally meant to start in mid-Nov, which was 6 weeks after my surgery on oct 4th.
I thought they didn’t like to start chemo until you are healed from the operation. I in fact delayed my chemo (FECx 6) for a further month, because I felt so physically and mentally beaten up, and didn’t want t o start until I felt both physically and mentally able t o cope with the deamnds of chemo.

My oncologist told me that it was ok to delay chemo for up t o12 weeks after surgery, but not any longer than that - my was a stage 2 cancer, so not especially aggressive, so maybe it’s different for more aggressive cancers.
But I have found FEC pretty hard to tolerate even now I am completely healed from the op - I can’t imagine what it would be like if you still had significant post-surgery problems.The other thing is that mentally I was so much better by the time I started chemo in December - by then it was 3 months after diagnosis, and I had come to terms with both the cancer and having to have the chemo.

My impression is from hospitals that once you are diagnosed with cancer and start treatment, they want to process you through as quickly as possible, to make it all more efficent and cost effective, which is understandable.
But I really don’t think it’s necessarily a good idea for the patient. I was a nuisance for my oncologist, because I delayed the chemo, but I don’t care, frankly - if I had started it earlier, I think I would have had a complete mental breakdown, and I’m not ashamed to admit it.

Cancer, surgery, chemo are all huge assaults on the body and the mind - the treatment will go on for YEARS - why hurry it at the beginning, when you haven’t even healed up from the operation?

Wishing you and your mother the best, and I hope you can find a way to get through it together xxxx

11

Hi Jessiqua!

just felt moved to reply to your post. I know its a week on and hopefully you will have had a chance to talk to somebody, and will be in a better place!

You sound like me. (I’m a physio). I am that person who needs to know as much detail as possible, all the nitty-gritty, as to me forewarned is forearmed! My family are not like that, so having found everything out, nobody seems to want to discuss it.

Luckily I have two close friends here; one is an oncology nurse, and the other a fellow PT who goes back to my schooldays! Neither of them are afraid of me talking to them about anything at all. Neither of them tries to cheer me up by telling me not to worry, when I have a valid concern!

What I was going to suggest to you is a) is there somebody else on your mum’s team, eg nurse navigator, who is familiar with her case, with whom you could have a frank discussion of your concerns? And b) re the side effects: you know about them, even if Mum doesn’t want to hear, so you can quietly have plans in place to produce as and when things occur.
That way, if she has a problem, you can brightly say, “oh that is not unusual, here is what we do about that!”, and she will know you are there to help when she needs it!. Good luck with everything. Whether she realises or not at times, she is lucky to have a loving, supportive daughter like you! xxx