WE DON'T KNOW WHAT TO DO NEXT

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I’m sorry if this post makes me sounds heartless but me and my neices and nephews are totally at our wits end with my SIL. If I sound jumbled up I’m sorry but I literally don’t know where to start.

Yesterday was day 5 post MY SIL’s first cylce of FEC and when I went to sit with her, as I do almost every day, the first thing she said was…it’s good you came because I really think I’ll be dead in 2 hours. And she meant it.

Now comes the confusing part - she looked really well apart from appearing to have aged 25 years over the last few days. When I went in to the house I asked her grandaughter where Bibi was because I honestly couldn’t see her and a wee voice came from the couch and said …here I am. I thought I was looking at an 85 year old and my SIL is a very young looking 63. Gone are her lovely skirts and jumpers, trousers and tops, brightly coloured house dresses and in place are things her granny would have worn - very drab house dresses, headscarfs and wraps that match the dresses and her sons grey socks.

Now comes the horrible part, its obvious she is no way near as ill as she is portraying - we know this because she is a lady who cannot do illness, not even a cold and all the things she does when she has a cold etc are now being multiplied.

Now no one is dusputing that she is ill but we are at the end of our tether 5 days into chemo because of the way she reacts to illness. We had to make a decision very early on that she wouldn’t be told about all the possible side effects because if she knew of them she would do her best to get them. I’m really sorry if that sounds horrible or heartless but its the truth. We have to watch everything we say, I found out for her why Oprah:( said people shouldn’t eat dairy products when they undergo chemotherapy and she immediately said…oh my god, I had a square of cream cheese today, shall I call the oncologist and ask If I need antibiotics or a drip. Her oncologist is the Dean of medicine in our local university and also a family friend and she wants us to call him for everything, though we now refuse. How can you call a professor up at the weekend and get him to answer something that was said by oprah bloody winfrey.

Please don’ty get me wrong about my beloved SIL, she is usually a vibrant, funny woman who spent years running her own business. She is up for most things and loves to travel and she did make a very brave decision to have her hair cropped to about an inch all over prior to starting chemo - as an arab lady even at 63 it was down to her waist.

Another reason I know she is ‘acting’ and I say acting because right now I cannot think of another word … her and my husband are like two peas in a pod and he does man flu really well. I look at my SIl and I can see my husband and what he does when he is ill, so can the rest of the family but this time we cannot laugh like we usually do.
Is there a chemo version of man flu that my SIL can have?

Everything we can do to support her we are doing but nothing we do is helping her because she won’t let it, or if she does its for a few moments only.

This is a lady who is much loved, she is our head honcho, her son aad daughter in law live with her as do her 2 grandchildren. And when they are at work me or my daughter or my SILs friend stays with her.

Today we hve decided we will take her back to the oncology ward and have them tell her that what she is going through is normal, a bloody awful horrible normal, but normal symptoms for someone who is having chemotherpay. A freind of mine had the same chemo and was able to go back to work a few days after each cycle, now I know thats not what everyone can do but my SIl has it in her head that because she couldn’t go back to work its because she is having terrible side effects and something is very seriously wrong with her. It has been pointed out my friend had to go back to work and that maybe if my sil had to do something, even make a cuppa, she would maybe find she was feeling a bit better.

She has made up her mind she will be very ill during the chemo and she is managing it - please help me as to how we can handle this because we are at our wits end and dreading the next 5 cylces.

Just to add, to date she has been sick about 6 times, has had dreaful acid and gas, gone a bit numb around her lips, has a funny taste and sensation in her mouth and feels very weak. Just to add she was sick 3 times yesterday afternoon but i think it was because her steroids finished the day before. Before that she was sick 3 times on day 2.

I’m really sorry if anything I’ve said sounds harsh or disrespectful. I know its not us having the chemotherapy and we have no idea as to what its like but really, we are at our wits end.

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I just read my post back and it sounds horrible, once again I’m really sorry.

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I cant think how to answer this and I am sure others who have read it are struggling too.The poor lady is terrified,she has cancer that is serious enough to need chemo.She is being sick,feeling wretched and afraid.Believe me all of us feel like this sometimes and it doesnt really help to know that others are as bad or worse.To compare it to ‘man flu’[whatever that is]is to diminish her genuine fear and suffering.You say she is much loved-the best thing for you all to do is love and support her.Agree that she feels appallingly ill,tempt her to eat and drink a little.Give her a new pretty robe or something she feels comfortable in.I was 62 when I went through chemo and spent the first week of every cycle mainly lying on the sofa in a dressing gown.By week 2 she will begin to feel better but she needs your understanding so much at the moment.Good Luck and Love to her.Why not get her on here?We will help her through and answer her fears as well as we can.
Val

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Chemo affects people differently. I can only speak for myself and say I was completely floored and spent several days in bed each chemo cycle, as well as spending time in hospital with neutropenia.

I was surprised how badly chemo affected me. I thought I would be able to carry on as usual.

Your sister in law should mention her sickness to her medical team as they can change her anti sickness meds.

I think you ought to show her more sympathy instead of likening it to “man flu”.

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I feel very sorry for this lady.
I was in bed for 7 days after FEC and then still very weak for a couple more.
We are not all like jane Tomlinson you know!
She is very scared - poor lady. Shame she hasnt got more caring freinds and relations around her!

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Warning: if you are about to start chemotherapy this post may be distressing, so please don’t read it if you are unsure - thanks.

I don’t want to add to the chorus of disapproval here, because I’m sure the opening poster is also suffering, although it is suffering of a different sort. I have never had chemotherapy, but I have nursed many people who have, and I was with my mother when she went through a diagnosis of breast cancer, then radiotherapy, then secondaries, then chemotherapy, then refusing further treatment and, ultimately, death. I am now a priest and work as a hospice chaplain. So, although my experience is secondhand, I think it may be relevant.

My mother loved life and never made any kind of complaint or negative comment with either her primary or secondary diagnosis. However, after the second of her planned six cycles of chemotherapy, she told me this:
“I hope you’ve brought morphine or something with you so you can kill me; I want to die. Being dead would be better than feeling like this. I can’t stand it - somebody kill me, somebody help me.”

My mother chose not to have any further treatment. I guess what I am saying is, chemotherapy is a very individual experience, and can affect even formally stoic people very badly. And we are all ‘brave’ about different things. I can deal with most things; nothing frightens me, and I have a high pain threshold. However, the slightest hint of nausea and I am reduced to a gibbering wreck!

So, whatever your inner feelings, please take all that your sister-in-law is saying at face value, and treat her as you would want to be treated. After all, one day she may be the one looking after you.

Sass xx

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Hi,
I would say grin and bear how she is reacting, while she comes to terms with it. Sometimes chemo starts so quickly after ops that you are left reeling and just need a bit of time to just take on board that you have cancer. I woke up with the thought ‘I have cancer’ every day for quite some time. Not a good way to start the day off. I wouldn’t compare her to anyone else as chemo and cancer don’t really work that way. I was never sick through 7 months of chemo. If you want to help her, bite your lip and concentrate on getting the chemo unit to sort out her sickness and side effects. They start you off on cheap stuff but there are many alternatives. Chemo is unlike many other illnesses in that you have to keep repeating being ill and it is tough sometimes to keep putting yourself back in there. She might need something nice to look forward to when it is over,
Good luck to her and plan making her ok and good week in between doses, something to look forward to. I used to go to the cinema, visits, walks, shopping, etc, whatever does it for her.
Lily x

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Hi Sharon

It’s very difficult to imagine what chemotherapy is like if you’ve never had it.

First of all, it’s a sublethal dose of some very toxic drug. In order to kill cancer cells, it has to very nearly do the patient in as well. Which can be very frightening.

It’s systemic; it affects every single part of you. The average person knows about the hair loss and nausea, but it can affect your vision, teeth, digestive system, levels of fatigue, etc as well. Sense of smell, too, tea used to turn my stomach during FEC.

From my own experience of it, it felt like a hangover, flu and seasickness all rolled up in one, with a hefty bout of constipation for good measure.

I think it also affects personality, too, after all it gets into the brain as well as everywhere else. Others may have different experiences, but I didn’t want company and hated talking (or having to listen to anyone, or anything, even the radio) for much of the time. I think you are doing a good thing by sitting with your SIL, but perhaps you just need to be in the same house and not in the same room?

I think the body learns to tolerate FEC, so this first one may well be the worst for her; the rest less traumatic. I think it’s understandable that she feels panicky (these are uncharted waters for her, after all) and doesn’t feel like doing much, sometimes movement makes everything seem worse. She WILL start to pick up, hang on in there, be as patient as you can, and you may be amazed at her by the time the next treatment is due.

Someone suggested getting her to join this site - I think that’s an EXCELLENT idea.

X

S

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thank you for taking the time to reply, I’m sorry a few posters didn’t understand what I was saying or trying to say.

I really don’t see there is any point in trying to answer the posts given how badly this one has gone down.

No one here knows my SIL, no one knows how she reacts to illness in general, no one knows how she is being looked after and no one here knows how she has reacted to having breast cancer.

If I could get her to join a forum I would but that is part of how she is dealing with her cancer, she doesn’t want to learn about it, its me and my neice who are doing the learning - and yes I am aware of the side effects of chemotherapy over and above sickness and fatigue. I’m also aware that its a toxin, not far off being a poison.

Even the meds she was being given I had changed from ones I knew not to be so good because of what I’ve read here, to ones I knew were better.

I really tried very hard to make it clear that anything and everything is being done for my sister in law, that we are not moaning about having to look after her, that we are doing everything we can but we do not know what to do next. Not because of us, there’s enough of us to do this, but simply because of my SIL’s frame of mind right now.

I do know all about being a carer and I have patience in abundance,
my 18 year old son is severely autistic and I’ve cared for him since he was born, he has always been home educated and what he is today is down to us as a family.

I didn’t say chemotherpay was the same as man flu, it was a badly expressed attempt at explaining that from the time my SIL knew she was to have chemotherapy she made up her mind it would be dreadful and nothing would persuade her otherwise. To tell her it may not be as bad as some of the horror stories she’d heard just wasn’t acceptable, it was going to be the worst it could be - the same way a man is when he has a cold.

Did anyone even stop to consider that its such a delicate subject that maybe I just couldn’t express it properly? That even by trying to be very careful and mindful of peoples feelings I still couldn’t get it right.

For so many people to be reminding me about patience, tolerence and understanding seems rather strange given that next to none of you have displayed very much towards me, and the others in the family,who are doing their very best to take care of a loved one under very difficult circumstances. My SIL’s circumstances, our circumstances - not yours.

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Hi Sharon,

I’m probably not the best person to reply as when I had 8 lots of chemo, I was basically fine (threw up once after first one and then ended up in hospital for 3 days but felt reasonably well all things considered. So I was very lucky and I am fully aware that everyone reacts differently to chemo just as everyone has different personalities, beliefs etc,etc.

From reading your post, I think you are all really worried about your SIL and want to help but don’t know how (otherwise you wouldn’t have posted on the site) and that you are all struggling to comes to terms with seeing a once vibrant, strong person absolutely floored by the disease and the treatment that (hopefully) is supposed to get rid of it. Have you tried ringing the BCC helpline ? Or has your SIL got a breast care nurse assigned to her that you can all talk to and work through the side effects and possible solutions to the sickness etc ? Whenever you see the medical people, make sure that all the side effects and worries are mentioned so they can do their best to help - that’s what they are there for after all ! My care was, and still is, brill

As far as work goes, I was 42 at diagnosis and was immediately told to be signed off work and apart from a very brief spell last year, I have been off ever since and have just been granted retirement due to ill-health at the age of 44. Everyone tells me how well I look and I feel fine but have guilt about not being able to work any more
but I’m not allowed to and if I’m honest I know I couldn’t cope. Your SIL probably feels a failure that she can’t go to work and is out of control.

I personally think it would be a good idea to speak to the oncology ward - I was lucky in that all the nurses who gave me the chemo and were on the ward when I was in were lovely and told me to ring them if I had any queries even if I felt I was being a pest. A few times during treatment I did and they were really helpful - sometimes you just need reassurance.

Although I had different chemo, I was told that the first dose is a bit of an ‘experiment’ and they see how you react and can adjust future doses as and when required. Plus you have to remember these are highly toxic drugs and the body will have a massive shock especially when the first lot is given.

As far as the sickness goes, make sure the docs and nurses know about it as there are loads of things they can give to lessen it.

Hope this may help a bit - sorry if it’s a bit jumbled (there is a condition called chemo brain and it still affects me 18 months on !). I can’t think of anything else to say other than I wish you all, especially your SIL, the very best and say you will all get through this very dark time.

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Sharon

Please don’t be offended by posts.

Everyone on here is different, has different opinions and reads different things into what others have written.

We don’t have the benefit of visual clues (except rather primitive ones like ‘:)’ and ‘:(’)on here, gestures or tone of voice, so it’s easy to be unintentionally tactless (as I probably am right now - no offence meant to anyone!)- I know have been in the past.

You’re right, none of us know your SIL (how can we?) or your circumstances, unless you choose to divulge more of them to us. And, to be fair you don’t really know ours, either. All we can offer you is observations and suggestions based on our own experiences of chemotherapy, which, because we are individuals, will vary.

A few people sail through it with 'nary a care in the world, some are severely debilitated and most, I suspect, fall somewhere in between.

If you feel you are doing everything you can for your SIL, then you’ve already answered your own question - there IS nothing more you can do. You can either carry on as you are, or retreat to a respectful (yet caring) distance and leave her to get on with things in her own way.

Good luck

S

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Liz, thank you

I’ll go through a few things if thats ok then I’ll be off.

We knew my SIL would react badly to her chemo because that is the way she is. From the day it was mentioned she said I know what will happen to me it will be dreadful, she never allowed for one moment that it may not be as bad as she had heard it could be. Not that she had heard it from people with very much sense, mostly people who have no idea how their body works and who aren’t happy unless they have a funeral to go to or a person to visit in hospital. You’d really have to be here to understand the culture :slight_smile:

I do use the breast cancer help line - often

No, we do not have a breast cancer care nurse, this is the middle east :slight_smile:

We do see the medics, anytime we want, the oncologist is a friend and our nephew is a surgeon in the hospital where she is being treated. Today we just went to the clinic and she was seen and it was decided by the medics that her physical side effects are minimal and that her emotions are playing a big part in how she is feeling. I asked her if she was feeling depressed and she said no, but it is something we are keeping an eye one. Blood tests were done and her eloctrolytes etc are all good as are her platelets.

Work wise my SIl has been retired for a very long time and its her who mentioned my friend going to work after her chemo, not me. She said to me…I must really be ill because if I was still working I couldn’t go to work the way Z did. I told her everyone was different and that Z maybe didn’t feel like going to work but she had to…we have no social security here and if you don’t work you don’t get paid. But in my sil’s mind z could go to work because she wasnt’ badly affected by the chemo - not like her. In truth my friend was badly affected by the chemo but Sis won’t beleive it because my friend could work. When I said I would get Z to come and talk to her she said no - what would she know about how I feel, she must be built like an horse.

I have told my Sil exactly what you’ve said about the first dose being the dose where meds may not be exactly right and that she may be a lot better next time - but no, she will get worse because she knows she will.

thanks :slight_smile:

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Bahons, your right, no-one knows my Sil and how she is looked after so it beats me how pineapple could say the following.

feel very sorry for this lady.
I was in bed for 7 days after FEC and then still very weak for a couple more.
We are not all like jane Tomlinson you know!
She is very scared - poor lady. Shame she hasnt got more caring freinds and relations around her!

Still, if it made her feel better about something then great! I hope everyone who didn’t for a minute think that maybe I just wasn’t expalining something very well feels all the better for posting as they did.

Its a pity that a persons previous posts can’t be displayed on their profile, if they were I think it would be more than obvious as to the amount and level of care my SIl is getting. The reality is that had I not made an appointment for my sil at the doctors within minutes of her telling me she had a lump, and had I not actually gone and taken her to the doctors - she’d still be walking around with the lump.

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Hi Sharron
i have had 6 out of my 8 chemo and i can only say i have been poorly on chemo what with sickness fatigue and infections. But i do think fright can cause all these syptoms to be worse so why dont you see if you can get amilds seditive before chemo i took one and it did help with the sickness and it makes you sleepy only a suggestion. we all have diffrent tolrances and i know you feel mis understood but you just want your sil to fight and not give in to the se i can understand that but something to calm her might help.
Poppet x

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Knowing (remembering) how i felt when i was on chemo, thinking that i cant go and have anymore, i would have been mortified had i found out a member of my family was thinking and complaining about me beliving that i was exagerating how i felt - i would never speak to them again.
Just because she looks ok doesnt mean she is feeling the same.
Your comment about how she reacted when told she had to have chemo is normal, everyone thats told that thinks - oh my god i am going to feel terrible and is terrified.
Unless you have it yourself you cant even get close to imaging how it feels.
i do agree that a sedative might help her abit, especially getting near the time for the next session.

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poppet, its not even about her fighting. If I told you we couldn’t let her know about all the possible side effects because she would convince herself she had them, even when she didn’t, would that make what I am trying to explain any clearer?

I was with her when she went for her chemo and she was very distressed for about the first ten minutes we were on the ward, but once she got into bed and she said a prayer she was fine and told me, I feel really calm now.

We even had a laugh on the way home because the steroids had made her feel a bit high and she said to me…if this is what feeling tipsy feels like, I can understand why you like a drink.

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Pineapple, please think what you like about me and my posts and I will do the same regarding you and yours.

I won’t be replying to you any further.

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i am sorry but i just cant believe what i am reading !
“If I told you we couldn’t let her know about all the possible side effects because she would convince herself she had them, even when she didn’t” please tell me how you would know what side effects she is feeling having? Blimey…unbelievable

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Hi Sharron

I’m half way through my first dose of chemo, I’m 41 and I had my first blast of epirubicin (the “E” in FEC) 1 1/2 weeks ago. Aside from physical side effects, which I didn’t suffer with TOO badly because I had good anti-sickness medication, one thing that I was unprepared for and which shocked and frightened me was the fact that it made me feel hideously depressed for a few days (days 3 - 7 ish). I’m normally quite a positive and cheerful person, but for those few days I felt very negative and “dark”. It may be how your sil is feeling right now, or it might be exacerbating the way she is feeling. However, it did pass, and I’m going back to work next week until my next dose on 18th March - you might find that your SIL’s outlook improves a bit over the next few days.

If it doesn’t I’m afraid I’m stumped as to what to suggest really, but for everyone’s sake I hope you can all find a way forward for and with her so that the next few months aren’t spent in utter misery.

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Hi Sharon

Well I’m someone who doesn’t do illness well either and I would be a rich woman if I had a £100 for every time I have said that I couldn’t go on over the past 5 plus years and about 40 chemotherapies.

Some people undoubtedly do do illness better than others…in my own case I’ve done enough therapy to know that my extreme reaction to feeling ill with anything (I get bad ‘man flu’ too) is linked with a very early childhood expereince of being very sick and alone in hospital…doesn’t much help my behaviour now though!

It sounds as though your sister in law is in any case having a very hard time on her first chemotherpay…she has been sick a lot which is horrible (I have never been sick on chemo.) 5 days after a chemo like FEC I too feel absolutely dreadful and the last thing I would want is the thought of someone reporting my behaviour on a public breast cancer forum.

Fortunatley the people who care for me (I am 59) don’t keep secrets from me about side effects and don’t accuse me of ‘acting’ when I feel like s**t. I also think my dark sense of humour helps…and I hope maybe your sister in law can find hers.

Chemotherapy can in my expereince be horrible…horrible…and it has nothing to do with worn cliches about fighting.

Jane