It is 2.30 in the morning and I was laying in bed winding myself up, so decided to get it out of my system as I will never get back to sleep! The problem is my family - they just dont understand what I am going through. I have had a masectomy and I am now going through chemo 3 FEC and 3 Tax (I have the last one next week). I have got through this ok up to now but I am finding this last treatment very hard. Joint pains, no energy or interest in anything, hot sweats and I have also started feeling quite low. The kids are on holiday so I have an energetic 8 year old at home and also a 16 year old daughter who thinks getting a spot is tragic! My husband has thrown himself into his work (he is self employed), we cant afford a holiday and he wont take time off to be at home because he has to take a day off to take me to chemo every three weeks! I am self employed but cant claim incapacity benefit even though I have paid NI and worked since I left school because it is worked out on the last 2 years and I was at university and didnt pay my stamp when I was studying. I have a mother in law who lives round the corner but is no support whatsoever but likes to point out how your hair grows back patchy and ginger or how you pile on the weight during treatment. I cant discuss anything with her because it is discussed openly at the village hairdressers. I have three older sisters one who constantly moans about her health, so much so that when I come off the phone to her I feel lucky, the other one knows someone whos aunties friends daughter has cancer and I am always being compared to her, and the other one tells me stories of people that are worse off than me just to make me feel better, tells me constantly to (yes youve guessed it) ‘be positive’ and ‘youre nearly over it now’ and even ‘Youve only got radiotherapy now’ (yes and we all know thats a breeze compared to chemo) I was feeling low the other day and she suggested I take my son out for a bike ride!! And to top it all off everybody tells me I look really well even though I am silently screaming inside and feel like ****!! My mum would be there for me, she would listen to me and give me the support I need if she was well but she has dementia and I dont want her to know as it would be unfair to put her through that. I really miss her
Oh Lizzy, I’m so sorry you’re feeling so alone.
Having cancer is such a lonely experience, however supportive or unsupportive our families are. It is a private horror that can only be understood by others going through similar. The battering our bodies take and the resilience we have to call upon seem endless.
I am finding others’ comments really really annoying this time round. My friends seem so flippant - either that or they cry and hug me as though I’m dying right now. My family is different from yours, but just as annoying! They’ve said it’s as bad for them as it is for me, which I find quite insulting.
You’re going through hell, we all are. I bet you’re being amazingly strong and getting on with it as much as you can - I can appreciate it from where I’m sitting!! I had a row with OH yesterday as he said the SEs of chemotherapy haven’t been that bad… er, you try it then!
I guess we just have to bite our tongues and be patient with our families - the better we cope with it, the easier they think it is. But we know the truth. Big hugs and hope you get to make up for lost sleep today. xxxxxx Jane
Hi Lizzy
You sound like the kind of woman that is really capable and can just get on with everything, so that is now what people have come to expect.
I was a bit the same. In a way I was lucky and got a bad cold after my third chemo and was really ill, so had to let people in and admit that I couldn’t battle on alone. (I’m a single mum with 2kids and no family). Even then I still put on a brave face for friends and did not take up as many offers of help as I could have.
Chemo is really tough and you need to give your self a break. Organise a play date for the 8 year old and just go back to bed for the day, or even two days. It is ok to admit that you are finding it really difficult, sometimes people just do not realise, especially if you are still doing everything.
You can’t change other people you can only change your own behaviour. Politely cut phone calls short with people who upset you, take up the offer of help for the 8 year old. Don’t cook dinner or do the housework (maybe get a cleaner). Ask friends or the mother in law to prepare meals that you can re-heat for the family. I found it helpful to assign tasks to people otherwise they are not sure what to do.
Better still, just book yourself in the Penny Brohn centre and have a 3 day holiday, the world won’t come tumbling down and others in your life may appreciate you more and realise that you are ill.
Also, radio is a breeze compared to chemo, but the fatigue is tough and just plain depressing!
It is a rainy Saturday morning, make toast and tea and go back to bed - for the weekend!!
Hi Lizzie
Well done for getting this far without exploding. Your body and emotions have been through so much and it sounds as though you have had little support.
I cannot find fault with my family although at the beginning it was hard for them to understand what help would be needed. But some of my friends and colleagues comments have been difficult to take.
I hope you give yourself plenty of time to recover after your last chemo. You have done amazingly well and you should be proud of yourself. Hope you got some sleep. Dx
Hi Lizzie
I agree with what the others have said. I would like to add that its rubbish your hair grows back patchy and ginger. Mines growing back grey, which it was before under the peroxide! and very thick. Min law sounds a bit of a heartless cow! Tax is also unspeakably awful with side effects. Dont you just wish others could experience those side effects for just one day?!
Julia xx
Hi Lizzy,
So sorry you’re going through this. You’ve got enough to cope with all the treatments you’re having and your own emotions are fears. People will never really understand what’s like unless they’ve gone through it themselves.
I have similar prob with my own family and friends and it is REALLY annoying. I’m having my last chemo next week, too! (I’m having 6 FEC). My dad is a man of little words, so never really able to talk to him. My mum just doesn’t want to talk about my worries and the what ifs. When I was really tired with chemo, they think I’m lazy!!! I was bombarded with lots of weird and wonderful alternative treatments which made me very tired by friends and family because they think there must be a cure!
In the end, I’ve resolved to the help of a psychologist and have found it quite helpful so far. Had a bit of prob stopping mum to join me because she thinks that I’m going to say something bad about her. But things are improving with the help of the psychologist and I’m coping with it a bit better. It just helps talking to someone who really understands.
Take care & look after yourself.
xx
Hi Lizzy,
I was in exactly the same place you are this time last year (with the exception of the energetic 8yr old). I just want to give you hope that, although it takes time, it does get better. I’m 48 and back at work now with a full head of thick dark brown hair and not a grey in sight. It’s true that not everyone comes through it so well but most do and when you’re in the bad place you just have to trust you will be one of the lucky ones.
Gretchen’s advice was very sensible and I hope you’ll give some of it a try. It is very hard to depend on other people when you’re used to being the one everyone else depends on but I found people responded to me much better when I resorted to asking outright for help. You do have a way to go yet because although rads are easier than chemo I found, as Gretchen did, it’s incredibly tiring and the fatigue is depressing.
Jan xxx
Hi Lizzy,
hope you dont mind me poppin in here, but I just want to say you just be kind to yourself, its all about you for the next few months,dont think you dont deserve the best, put yourself first. Next year it will all be so different , it is for me,I cant believe how things change
take care xx
Hiya
I hope you are feeling better tonight and get a good nights sleep. I hopefully have my last tax next week too and I totally agree with how hard the se are. I got a cleaner to help us out which has been a godsend and am seeing a psych so Ij can let off steam. Families can try to understand but really can’t just like I couldn’t before this sh@@ happened. Take care and put yourself first , your kids second and deal with the rest when you feel better.
Vickie xxx
Hi Lizzy,I think we all go through this feeling of family and friends not understanding, our priorities have changed so much since we have been diagnosed, we could never have imagined how hard breast cancer would have hit us! and l think this is the problem with our family, because until it effects you, you dont realise what people go through.
I remember a friend going through this 10 years ago, and l was her only support, l probably told her lots of times to be strong, and she looked well, probably said the wrong things lots of times, but l meant well, and was trying to boost her up.
I know with my friends, the first thing they say is ‘you look so well’ l laugh now, and say ‘you look good too’ they mean well, what can they, or us say?
We are so sensitive, we pick up on everything they say and probably analyse it!
What would you like them to say? l think whatever they say would be the wrong thing! l would hate the sympathy, and when they jolly me along, l still feel sad! just how l feel at the moment!
Good Luck with your last TAX, you have come a very long way, it will get better, the joint pains will go, you will get your energy back, l think we all have that ‘no interest in anything’ we just have cancer on our minds all the time, but l hope in time you, me and all the ladies can put the bc to the back of our minds, it will take a long time.
Sorry you get no support from your mil, and if your sisters are of no support then perhaps tell them! tell them what you would like, and hopefully they will realise how they are being, and give you more support, perhaps they think you are coping and trying to carry on as ‘normal’ Or perhaps it is how they are, and you need to keep the chats as short as possible until you feel you can cope with how they are.
My dad had dementia, so l know how you feel, you could not possibly put this on your Mum, even if she could understand. Your Mum must be a big worry for you, so very sad.
Lots of Hugs for better days
Sandra xx
Thank you everyone for your support and advice it has really helped me. I have spoken to my husband about how I feel and although we cant have a long holiday we have decided to get a tent and go away for weekends. Even if it is just local it will get us out the house, we can enjoy the fresh air, talk, read and walk the dogs. I have never been camping before so its a whole new experience and I am hoping it will bring us back together as a family. I also spoke to my daughter and we are going to spend more time together while we are both at home before she goes to college and she is going to help me do the garden. I am a very sensitive person but I am going to have to learn to ignore peoples remarks and realise that we all deal with things differently. It really helped to write it all down and get it out of my system though and to get replies from people who totally understand where I am coming from as it is a very lonely and frightening place. Thank you! x x x
HI Lizzie
sorry to hear you are at such a low ebb. Unfortunately, as it is often the case with traumatic experiences, unless you have ACTUALLY lived through the same one yourself, you just don’t know what it feels like. THat is why I get a lot of comfort from reading other women’s experiences on this forum. It makes me feel as if I am not alone in carrying this terrible burden. Friends and family might mean well, as we all know, but are often at a loss for the right thing to say. I think we should acknowledge that it is indeed difficult for them. HOWEVER sometimes I think we have this stiff upper lip approach to things and pretend to others we are coping when in reality we are far from it. I honestly think we should not be afraid to ask for help and accept it gratefully when it is offered. I for one would be delighted to be asked to help somebody who is not well (by doing the shopping, cleaning, cooking, etc). So if YOU know you would gladly do it for someone else why not accept it when it is offered to you? You have to let people in and you will see how much your life will benefit from it. When a lovely elderly lady friend (an adult student of mine) asked me if there was ANYTHING she could do for me I boldly suggested, as she is a very good cook, that she cooked something for me one night after the big op in order to get my husband off the hook. She was DELIGHTED and promptly appeared at the doorstep a couple of days later with three frozen ready meals she had made (all delicious)plus a tea loaf. I was overwhelmed with gratitude. And she was happy she had been able to help. Which she did do! Big time.
So my tip to you all is don’t bottle anything up, don’t be afraid to admit you can’t cope and, more importantly, LET PEOPLE HELP you (don’t be afraid to ask for it too). Because you’ll find that given the chance they will. Happily too.
All the best
Lulu60