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My mum has cancer, she is going to be fine, but I'd like some advice

(16 Posts)
Suspendersformybelief Sat 01-Apr-17 22:23:19

I feel bad writing this post because I really don't want to be self indulgent at a time like this...

My mum has cancer. She's going to be fine, they've got it in time and it hasn't spread. She's got a rough few months ahead but ultimately, this is in now way going to beat her. So why does it feel this shit?

She's had a major operation to remove the tumour and some post surgery complications which although tough were nothing unexpected and apparently part and parcel.

We are a really close family, I speak to my mum daily and see her most days. There was a lot of uncertainty in the weeks running up to her diagnosis. It was really scary because it could have been really bad. And then as soon as they figured out what it was, they acted really quickly.

I just feel so weird. I don't know why I do because we know she's going to be OK. I have older siblings and we've all dealt with it in different ways. I've been the positive one, reminding the others that cancer isn't a death sentence etc.

She got so sick of being asked if she was Ok all the time, so I resolutely never asked her how she was feeling. I told her why I wasn't asking so she knew that I did actually give a shit but I've always been the joker in the family I suppose, so I kind of tried to keep her mind off things and distract her.

Now she's in hospital, I just feel lost. She's in pain and having a hard time. And I feel so fucking useless. I know everyone feels useless at times like this, but I actually AM fucking useless.

Everyone else is doing useful things. I was asked to take washed fruit in for her so I did. But I was asked "why have you brought it in bags and not Tupperware?" (I thought it would be easier to just throw bags away) and why I brought the wrong colour grapes (errrrrrm dunno really) I feel like the only thing I'm useful for is making her laugh but it hurts her to laugh so there is nothing I can do.

I know this isn't about me. I know everyone is just trying to do the best for her. There are so many of us and I think maybe even though I am a fully grown 30 something adult, being the youngest, everyone is reverting to type. So there's been certain bits of information relating to her condition noone's thought to tell me about until way after everyone else has known. So I've been walking around in this "let's all be positive" bubble not knowing all the facts.

I'm just wondering how other people in similar situations felt - does cancer just do this to your mind when it effects someone you love? Even if you know it's treatable and it's going to be fine, just because it's cancer does it make you feel this depressed? Like this black cloud? When I see my family, I'm upbeat but when I'm not I just feel so...nothing, just crap.

Also, I'm wondering if I should back off. Maybe I'm not what my mum needs right now. I keep going to visit and she's tired and people are queuing to go and see her. Maybe she just needs the people who are useful and to be allowed to rest. One of my sisters called me the other day when I was on my way to visit to say my mum was tired and I shouldn't go.

Can anyone whose had an illness like this give me an idea of what she might need and if anything I can do that is actually going to help.

another20 Sat 01-Apr-17 23:14:18

I am so sorry that you are going through this.

I am from a large family and we went through this.
Yes we all reverted to the childhood roles even though we were in our 30's and hadnt lived with each other for decades.

Everyone is very stressed by this. You are all in shock. People tend to become an exaggerated version of themselves in this state. So cut yourself and each other some slack.

t would be good to organise a rota for the hospital as well as share out the responsibilities so that everyone can contribute to the caring. As you will have months of support to plan for. Your Mum will most definitely be feeling exhausted and overwhelmed - so you could ask her what she wants/needs but just keep an eye out for her energy levels.

another20 Sat 01-Apr-17 23:20:53

Also a family whatsapp group would help - so that everyone is updated at the same time with the same info. My hospital slot on the rota was first thing - so I was there are the 7.30am ward round and could update my siblings as to how her night had been and what the Dr had said. There was always someone with my Mum (didnt stick to visiting hours) and we took on all of her personal care in the hospital.

Suspendersformybelief Sat 01-Apr-17 23:36:49

Thank you, the Whatsapp chat is a good idea.

I think we are trying to share it out but the older sisters are assuming a lot of the responsibility. It's not the time to get possessive, we're taking it in turns to go over but I'm feeling like it might be more helpful to take a back seat and let them take over as they seem to be better for her, rather than insisting on a slice of time just to make myself feel useful. But I desperately do want to be useful.

I will keep asking her.

Thanks for your advice

Suspendersformybelief Sat 01-Apr-17 23:42:39

Can I ask how you felt and how you coped and was she Ok?

I don't know if it's right to feel this low when I know it's going to be Ok. Maybe it's a delayed reaction to when it was all so uncertain

I'm sorry you went through it too

HeddaGarbled Sun 02-Apr-17 00:00:48

When I've been in hospital, I have felt a bit neglected if a visiting time went without a visitor so I would keep liaising with your siblings and step in if any of them aren't going. I wouldn't have given a fuck about Tupperware versus plastic bags so that's just your siblings being arsey. Colour of grapes, maybe, depends whether your mum has a preference. Think about what she might like, don't just be given instructions by your siblings. Nice drinks, lip salve, favourite magazine, think about your mum.

Positive is good, funny stories are good, relentless joking when you're feeling crap can be wearing. You must ask her how she is feeling, ludicrous to pretend she isn't ill but you don't have to put on a sentimental voice and face to do it, just ask her, listen to her reply and then respond accordingly.

Is your dad around? If so, talk to him too - he'll be feeling lost and frightened. Make sure he's eating OK. Does he need any help at home, lifts to hospital etc.

Does her house need checking on? A good clean, bed changed and the fridge cleared and restocked before she comes home would be useful.

Suspendersformybelief Sun 02-Apr-17 00:08:42

Thanks.

Its not that I'm pretending she isn't sick. She told me a couple of times it was getting her down when people kept calling to ask how she felt and trying to talk about it. So I stopped asking when I called and she'd update me when I saw her anyway. We talk about how she feels when I see her.

Everything you've mentioned re my dad and the house etc is well and truly covered. One of my sisters has moved in with him.

He won't say the word cancer. He just won't talk about it but he is struggling. It's hard to watch him really.

I will think about some of the nice things you suggested, a couple of little luxuries, feel good things is a good idea.

HeddaGarbled Sun 02-Apr-17 00:23:15

Hospitals wards are too hot, too noisy and boring. So things to while away the time but which don't need concentration like magazines and puzzle books are good. Something to block out noise like MP3 player with her favourite music or IPad with some films/tv she likes already downloaded (as wifi probs not available). Cold drinks to make a change from the warm water and orange squash provided. Moisturiser, body spray, lip salve to counteract effects of hot environment. Hospital food isn't awesome either. My mum once brought me a bag of tomatoes which was a genius idea and made me very happy smile

scoobydoo1971 Sun 02-Apr-17 00:42:31

My Dad died from cancer five years ago, my Mum had localised cancer last year. I was a carer for both. She is ok now, his cancer was detected too late but what I have learned from this emotional journey is that you need time-out so you don't burn-out, and don't feel guilty about that. Get in touch with local cancer charities about carer support groups and counselling if that is what you feel would help you emotionally cope with all this.

As for hospital visiting, you have got to go into the ward with a positive approach - fake or not. When I wanted to cry about my Dad, I went for a long, long walk around the hospital.

I strongly recommend someone visits your mum everyday for her own emotional well-being, but also to make sure she gets a meal fed to her and hydrated. I ended up camping in the room with my Dad during his last week, doing basic care myself as the nurses were too busy and I bailed him out of there to die at home in dignity. It took being a 'pain' attitude and asking too many questions - in fact the oncologist wrote to the family GP to say I was an 'annoyance' to him (read his ego...having to order an ambulance to take my Dad home).

The Francis Inquiry highlighted how many patients are failed in basic care because of various factors including under-staffing. While I feel that most NHS staff are dedicated and hard-working, there is a dismissive attitude amongst oncologists that anyone over 75 should be lucky to be alive...and should put up with a bit of pain as part of the course. Staff don't have time to feed patients so a relative or friend should go in where appetite is poor. I have seen the NHS menu through my multiple admissions, and my children's...it is a bit hit and miss.

I cannot stress how important it is that you read up (reliable sources) on my mother's condition and start working towards putting any community-care package together for her while she is on the ward ahead of discharge. This might be via an occupational therapist, or by contacting social services. Under the Care Act, she (and the carers) are entitled to an assessment of need. You may feel helpless in hospital visiting, but you could be her advocate in other ways. She is most probably entitled to Personal Independence Payments (or Attendance allowance), and a Blue Badge etc, and a Council tax reduction if there need to be adjustments to the home for her condition.

I do appreciate how stressful and emotionally draining it is. My mother had a huge tumour removed at 78 last Spring, and it had not spread to the lymph nodes thankfully. She is still under review but survived post-op complications to tell the tale. Stay strong, think positive and be kind to yourself as the carer. Good luck.

Crumbs1 Sun 02-Apr-17 00:53:31

I'm maybe a bit different. I refused visitors apart from my husband because I had no intention of greeting people in my nightdress and day after initial operation I got up and dressed. Cancer isn't a death sentence and perhaps we need to stop treating it like the worse thing in the world. There is far, far worse.
What did I want recovering from surgery? A decent coffee and to be allowed to be me and not have people continually put their heads on one side. I wanted to watch Wimbledon and get back to work ASAP.
During chemo I wanted minimal disruption to normal working life and role as a parent. I wanted to drive myself to chemo, to get it done and dusted and get back to life as normal.

another20 Sun 02-Apr-17 00:55:33

Just any little thing that can bring some comfort or distraction is good to do or bring, as others have said. I brought in a foot spa thing and did a lavender aromatherapy scrub/massage each morning which she enjoyed. A cancer diagnosis, whether they have caught it early or not rocks everyones world. The "what ifs" can become intrusive thoughts. The uncertainty is exhausting and even when everything goes as well as possible you are still facing years of remission ahead until you get an all clear. So best to take stock, pace yourselves and respect that everyone will deal with it and behave in their own ways - and there is not right or wrong way. My Mum was diagnosed as "terminal" immediately after her surgery and we all took different lengths of time to process this news.

helhathnofury Sun 02-Apr-17 02:20:22

I have cancer and been in hospital numerous times. Re the visiting I would let your mum lead, if she's got a mobile with her then just check she's up for a visit - she might just prefer a phone chat maybe. Constant visitors annoy the hell out of me, but once I was in hospital 50 miles away so no visitors and was a bit lonely. Depends also if your mum can do things for herself at mealtimes as staffing can make that tricky.
Everyone's on edge so wouldn't take the criticism from siblings to heart.
My dh has often said how useless he feels, but for me as long as he keeps the kids looked after and not too disrupted then that's all I ask.

Puddington Sun 02-Apr-17 15:41:23

does cancer just do this to your mind when it effects someone you love
I think this might have something to do with it tbh. My dad had bowel cancer last year -- caught very early and treated quickly although the surgery had an unforeseen complication that made what was supposed to be a very routine thing turn into a few MONTHS in hospital. He is only 60 (not YOUNG young I know but not exactly elderly either) and has always been very very active, dedicated to his job, disliked relying on people etc.

I can't even describe to you how much he hated being bed-bound and helpless for months and how depressed it made him -- we are a tight-knit family and my mother would have spent all day every day at his bedside but some days he just couldn't face having any visitors at all, and I did understand. Most of the time he enjoyed seeing us and I was able to send him text messages etc even when I wasn't there but god, it was just relentless, perhaps even moreso knowing that he was only supposed to have been in hospital for one week!

It was strange because as you said, we knew he wasn't going to die from the cancer but we also had no idea when he was going to be allowed out of hospital, or exactly what the surgical error was going to lead to. I know I personally found it all very hard to process, it almost felt like I was watching it all happen on a TV screen or something, I rarely knew what to say as I knew that I couldn't really make it "better". I felt like I always had a headache. In retrospect I think this is all very normal, although horrible for everyone involved.

I should finish this very long, rambling post by saying that after such a long road he is almost completely recovered from everything now, in a much better place mentally too, and has been given the go-ahead to go back to work (part-time at first) starting from this month, which he was over the moon about.

A lot of good ideas on this thread -- letting her take the lead with regards to whether/when she wants visitors, and bringing some supplies along when you go (my dad got very bored in the ward all day so he liked books, newspapers, puzzle books etc), some juice or small snack (obviously depending on what she is/isn't allowed to eat), any toiletries she might want or need. And try not to doubt yourself or think you're not what she needs right now -- as you say you are a close family and I'm sure she appreciates seeing you. It's entirely possible that too many visitors in one day might wear her out (in fairness, it probably would me) but as another poster said a WhatsApp group/rota for visits might help with that. Best wishes to all of you flowers

JayneAusten Sun 02-Apr-17 17:10:49

Sorry your mum is sick. I know what this feels like. It sounds a little bit to me as if you're so determined to be POSITIVE about things that you're not allowing yourself space for natural fears that come with a serious illness. Does that sound likely? It's healthy to think about possible repercussions and ways things could go wrong, even if you're pretty sure it's going to be ok. It's a way for your brain to process all the unknowns. You also have to acknowledge sometimes that some things are just shit. Yes, ok, you can be positive that it's going to be ok in the end but RIGHT NOW it's fucking horrible. Your mum is in pain and you are missing her and you are scared and she's probably pretty scared, and that's SHIT. There's no need to paint a brave face on it all the time. Being positive is good but not to the exclusion of all other emotions. Why are you feeling like this? Because it's normal and natural when something horrible is happening to someone you love. Just allow yourself to feel what you feel and be really kind to yourself. xx

BlueGoats Sun 02-Apr-17 19:36:25

Your feelings of helplessness and mix of sad/blank/weird sound pretty normal to me - I hope that's reassuring. My mum has had health problems since I was small, and DP has also been in hospital recently, so I have plenty experience of similar.

If your mum can do basic things herself (get a drink of water, use a phone, move around) your main role is to provide company, relief from the monotony of the hospital, and to ferry odds and ends around. You don't have to talk all the time or say the 'right' thing, and if you're not sure if you're being helpful or not just ask and listen to the answer. Bear in mind she's probably really tired, both from being ill and from being in the hospital environment.

Overreacting to small stuff (like fruit suitability) also sounds par for the course. With hindsight I have had some truly daft arguments with my dad over the years, so unless someone is being consistently unpleasant try to write it off as a stress thing.

Do try to make offers of help/visits specific rather than open ended. It takes a lot more effort to respond to 'is there anything I can do' than to 'would you like some of this pasta', 'does it suit you if I visit at 4pm', or 'shall I bring your green cardigan'.

Best wishes to you and your family.

user1490981241 Mon 03-Apr-17 00:20:36

flowerscake❤ cant advice much from experience but as someone who has a 90% chance of having cancer (hereditory) i look upon it with a different view. You are being the family rock and being so strong in doing that, i just want to say, its ok to let it out, its ok to feel the way you do! I know its a horrible and tragic thing but you need to think positively and still deal with your emotions as well. Wishing you and your family all the best and god bless!

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