HI Hemly,
I’m sorry to hear you’re having such a tough time at the moment. I’m sure we can all relate to how you’re feeling and it’s very easy to feel very alone and isolated. Men seem to cope with things very differently to women and I too find it hard at times to get the right sort of support from my husband.
I would echo the others’ advice of trying to seek support from a Macmillan or other nurse and I’m sure once you feel able to discuss your work worries with your boss it will be a lot easier than you perhaps anticipate. You are the important one in this and must put yourself first! I haven’t done a full working week since starting treatment as I’ve been on Easter holidays but start back on Monday and am dreading having to fit everything around weekly chemo and know I have may have to rethink things. Put yourself first and I’m sure things will start to fall into place.
Take care and we’re all here to help each other through all this.
Hema, I honestly don’t know how you are working through the treatment you are on. I stopped work as soon as I started my chemo. It’s not just that I thought I would be tired etc. I also felt I couldn’t give my job the commitment it needed.
Yes, I spend a lot of time at home on the sofa watching rubbish TV, and I so miss my work and the contact with other people, and the laughter But I see this time, while I am going through chemo, as my healing time, my time to be quiet and let the treatment work its course.
I do spend a lot of time while I am off work thinking about this illness, and sometimews these thoughts get very dark. I know if I was at work I would not have time to let these thoughts into my head. However, there is a certain therapeutic element to being able to think, to be allowed to keep company with just myself, and even to let my mind dwell upon silence from time to time instead of the hustle and bustle of what is normally, for me, a very busy life.
It sounds to me that the time has come to for you to take some time out to give your body a chance to recover from each treatment and to give you time, emotionally, to cope with all the worries that come with this disease. You can go back to working when you have finished your treatment, but right now it looks as though you need give yourself time to heal and stay strong. Just coping with the onslaught of the drugs is enough to floor the strongest and the fittest of us. It would take a very hard boss not to recognise that, and I am sure that if you told him honestly how you were feeling, physcially and emotinoally, he would want to support you in whatever you needed to do to get better. Hiding things from him is likely to upset him, when he finds out.
A counsellor would help you look at all these issues - I have had counselling several times, and it has been to help me talk about practical issues and work out my own solutions, as well as sort out my head. Oh yes, I have had some counselling sessions where I have spent a great deal of time letting all my sadness and anger spill out in tears, but mostly I have come to them in a haze of emotion and come out of them with a clear idea of what I want to happen/need to do.
Hema I’m sorry that you are struggling so much. If it is any help, I also had a stressful job at the time of diagnosis and was under pressure to go back. I too had a breakdown and had to retire early. My energy levels still haven’t recovered after 5 years though I am not a young woman anymore (56) so I put it down mostly to that. Everyone on here knows what you are saying and to some extent can relate to it. It sounds like a trip to your GP might be needed and to have some time away from work so that you can relax and heal. Take care of yourself Honey and I know you will find much of the support yopu need on here.
Love and hugs
KateG
reading all these posts just makes me want to cry, sometimes i think im just failing in what i want to achieve in life and the things i want to do. i suppose happening the 2nd time round its just harder having to deal with the blow all over again and not being able to get on with my life and be normal again. the advice on here has been great not sure what i would have done without all your support.
i have contacted my employer and as i couldnt talk to him i have emailed him, a cop out i know but im finding everything hard. i knew he was going away on but not so soon, looks like i missed him. hopefully he picks up his emails. not sure whether i should call my colleagues at work, i really dont want to.
im still not talking to my husband as he still has yet failed to understand why i am mad at him. maybe im too hard on him but why should i give him the benefit of the doubt?!? its hard enough no one else understanding but i thought he would at least have some clue.
normally we would discuss everything and although i have told him that i cant take work anymore and its all too much, i havent told him that i have made the decision of taking time off sick, you would have thought he would have noticed a change in me. normally im on the laptop working but i havent switched on my work emails and i only today switched on my mobile. why should i have to sit him down like a little boy and explain everything to him??? thats what really gets to me.
it also pains me to see that he has a normal life, gets up goes to the gym, goes to work, has all this energy that i dont have. i envy that and i wish i was normal.
im such a moaner. but i just cant take life at the moment, i want to sit on a quite beech somewhere reading a book.
You’re not a moaner helmly at all. You echo so many of the feelings and fears I’ve had in the 5 years that this disease has hit me three times. For some reason I’m able to be strong at the moment but believe me. Have had times when I just felt I was washed up and had no aims or role in life in my early 30s due to feeling so helpless and completely battered by all the treatment etc. but you will pick yourself up. You will eventually feel better - I’m sure of it. You need lots of tlc at the moment and opportunities like this forum to just moan away and rant all you like. We do understand. We’re all different of course and all cope differently at different times and who knows what I’ll feel like tomorrow but it’s important that you musn’t feel like you’re alone or that life will always feel as bleak as it feels for you at the moment.
I understand very well what you say about feeling like your husband needs to be sat down and explained exactly how you feel - I have the same arguments with my husband - he says " How do I know how you feel if you don’t explain it to me?" and yet expects me to be telepathic to his feelings but can’t do the same for me! Men do deal with things so differently I feel. I feel like I’ve been having to be strong for him as my secondaries have hit him so hard but then I wonder who is actually going through all the treatment and fear as well!!
Anyway I just hope that you will start to feel a little better soon.
Anne, i cant imagine how you are coping with it 3 times im finding it hard the 2nd time, are you still at work? as i think for me making the decision again that i cant be committed to work has hit home hard.
i mean what am i supposed to do with my life?? i cant even make any decsions. its hard being so young, i see my freinds and their lives and what they have been up to and its crap that i have to result to sitting at home because i have no energy, everything aches and my mind wants to get up and go but my body wont allow it.
ive contacted my BCN about getting in touch with a macmillan nurse and shes going to call me back today. hopefully it wont take too long to get an appointment.
I think that’s a good first step. I’m sure there’s lots of people who will be able to help you get back on an even keel. I cried my eyes out this morning for “no apparent” reason - made be feel better afterwards!
I’m so glad you’re taking steps to get some help. I completely identify with you feeling like this so young. I feel similarly and have had to finally accept with this secondary diagnosis (just at end of Feb) that I definitely won’t be having children and it’s hard to have to cope with such difficult thoughts and fears so relatively young. I’m 38 now but was diagnosed first of all at 32.
I’m still aiming to work but broke up for Easter holidays (I’m a part-time piano teacher) the week I began on weekly Taxol and fortnightly Avastin. I’m starting back on Monday and am worried I may find it all too much - weekly chemo really shrinks the week. I remember you were having Avastin I believe with a different chemo combo. How often is your treatment? I have been really lucky so far to be tolerating the treatment well so far. I feel the weekly taxol seems so far much easier to cope with than the FEC I had every 3 weeks 5 years ago. I haven’t so far had the real listlessness and total lack of energy I had on FEC. Do remember that when your body is under such strain and you’re so tired your mind is bound to feel shattered by it all but it will not last forever as much as it might feel like that at the moment.
Try and just be kind to youself and do nice things like have a nice warm bath or read something your mind doesn’t have to concentrate on too hard.
having children is something that i am still hoping for but i know i will have to hope alot and that is another hurdle all over.
i was dx when i was 28 and secondaries a year later. yep im on Avastin as well with gemcitibine and carboplatin. the chemo drugs make me larthagic and i think, like you said, as my mind is so exhausted my body is feeling shattered as a result, so i am feeling more than i probably should. my treatment is every 3 weeks but ive had to stop my 4th treatment because of low bloods and platelets and on monday i passed out while giving blood. so im due to see doc on tuesday and then hopefully back on the treatment.
i was looking at spa treatments on the web i may treat myself. even if it is getting into a pool and jazucci.
Spa treatments sound just the job! The best thing me and my husband have done is joining a health club last summer just after my treatment for my primary recurrence. I started badminton then which I now love and go to different classes or sometimes just the pool and jaccuzzi. It’s nice just to chill out and “pretend” you’re feeling normal for a while! I went to a low-impact aerobics class this morning and really enjoyed it!
I’m sure your low bloods will have an impact on your mind as well as body. Once they’re up again you will hopefully feel a whole lot better. I had a different nurse on Wed who failed in the first 2 attempts to get veins (leaving a horrible painful bruise now on my hand) and then I fainted as my blood pressure plummeted but luckily she was successful the 3rd time and chemo went ahead as scheduled but I do hope I get my regular nurse back again next week!! It may have been my veins but she seemed rather out of her depth when I fainted and she’s a nurse!!
ive signed up to the gym also with a personal trainer, the first time i went i felt so on top of the world and great, i have another session tomorrow so hopefully help through the weekend.
dont you just hate it when they cant find the veins! its painful, i have to tell the nurse’s to find another vein or use a different area sometimes it takes them a while but id rather that than go through the pain. its horrible to pass out and that was the first time for me and the nurses were good and everyone came rushing and i had to be put in a wheel chair! looking back at it its funny.
The pesonal training thing sounds good. I’ve wondered about doing that. Were they ok with your situation? I’m doing the Race for Life in Cardiff on 1st June ( I signed up before I got my secondary diagnosis) and was still at the run and walk stage before my chemo started and haven’t been out much. You have to laugh - I went on the treadmill for a few minutes before badminton last night and because I hadn’t been on for ages I lost concentration whilst running and fell off in very undignified style!! It was so embarrassing and of course to save face I just got back on again but have some very purple bruises on my knees today!!
Lie you say looking back it’s funny!!
yea they were fine. the personal trainer was quite comfortable she trains people with illnesses and has another person with BC. i only do light training nothing major like running! i couldnt run to save my life at the moment.
im going to be doing the race for life too, i think they have one where i live so a few of us are going to get together, i’ll be walking though. also our local hospice is doing one too.
I can only echo what others said but glad you have emailed your employer. I can’t speak to mine but have regular email contact which i can deal with. They cocked up my pay this week and that was the final straw and spent ages crying.
i go to the hospice for complementary therapies and craft workshops which I enjoy despite the fact I am bout 30 -40 years younger than them. They have a brilliant take on life and it gives me something else to think about.
My hospice nurse is wonderful and so is the hospice social worker.
My hubby - where to begin. He is still angry from my initial diagnosis 3 years ago and so occupies himslef with hobbies like the morris minor!! His latest plan was to knock down the chimney breast in the boys room. I have firmly pointed out this is a no-goer cos unlsess i can get on a trila or have recycled chemo i have no further options and am looking at about 3 -4 months and did not want to spend that time in a chaotic house with dust that my lung mets couldn’t cope . He did agree. I spent all last week in hospital and coped well with a lot of support fro friends and family but now I’m back, he is shirking all responsibilities and spending the lighter evenings in the garden instead of helping me. I do not have the energy to be angry but am just so very sad that i can not fulfill my future plans - seeing my young children growing up and being able to spend time with my hubby alone and doing things we enjoyed pre children. Men jsut don’t cope. I find my friend’s hubbies will ask me how I am but can never get any news from hubby so they are obviously concerned and want to help but he will not open up. Think I will try to get the social worker to see him on his own as he seems to get on with her.
In summary you are protected by the DDA act and should be enttitled to DLA under the special rules, Please see your GP to be signed off work and hope the MacMillan nurse gets in contact soon - she may be able to get you a grant for things which will help.
Low blood counts make you feel crap anyway and you need to rest.
A few years ago before diagnosis i was on a verge of a nervous breakdown and refused to answer the phone or look at emails. Then it scared me that it might be something important like an ill family member but still couldn’t answer it. Counselling and antidepresants helped…
You have so much on your plate - look after yourself. Sorry to be negative but don’t know your history - some spa places won’t traet you if they know you are having chemo cos of infection risk and lymphoedema risk - cheeck it out before you book cos it would be so disappointing and a waste of your money.I have reflexology, aromotherapy, facials and reiki and they really help me to cope.
Thinking of you - take care
Kate
Hi Hemly
Just wanted to send you my best wishes and wish you well. I know how you feel about the work situation, i was diagnosed last may and my treatment schedule meant i was looking at 10-12 months off work. I agreed with my employer & occupational health that i wasn’t going to be as on the ball as i needed to be for doing my job, it would have put those people i see in my work capacity at risk if i made a mistake. It sounds odd but for a while i think the not being able to work situation was as hard for me to get my head round as the diagnosis & thought of treatment. In the end i did as diedre did and had to change my thought pattern about it, looking at it as time for me, to give my body the best chance of reponding to & coping with the surgery,chemo&radio, to give me some time to think & reflect & to treat myself to nice times with my friends. I tried not to spend too much time alone (i live with just my gorgeous cat, dusty, who was a gem, kept me smiling!) and booked time with friends in advance, they were great about coming to me, driving me places, and not being phased if i cancelled at the last minute due to being too pooped to do anything. also found some counselling sessions very helpful, they helped me to put things into perspective, think more clearly and make short term plans that cheered me up. I accessed counselling through my GP, but i’m sure the macmillan nurses would be able to help. I also spent time talking to human resources at work & the benefits office about financial support and they were both excellent, again the macmillan nurses should be able to help & let you know all you are entitled to. I can’t comment about the husband bits as i say i just have dusty! mind you hard as i tried i couldn’t get her to make me a cuppa either!! Take care of you & i hope things improve lots for you over the next few weeks as you get your support in place,
Best wishes,
Rivergirl.
thanks kate, i was thinking about the spa treatments and couldnt go with a massage as im too paranoid about my arm and my back i would just si in the pool and jacuzzi. but hey how long can you stay wrinkly for?!!
i just need to get away. i may get to go to the beech after all, i actually spoke to someone today other than myself and she invited me to southend beech next week! if all is well and weather is good we should have fun!!!
ive just started to get a pain undermeath my rib cage and i think this is not a good thing, but im going to see if it passes over night and call in tomorrow at the hospital.
more bl*&dy pain.
i was supposed to go and see the terracotta army at the british museum and go to the gym but now this pain has come on fat chance i’ll be able to go. see what i mean about not being normal…its frustrating.
re husband he came to talk to me asking what was wrong with me and he sill doesnt know, i feel a full blow row coming on… plus he hasnt even asked me how i am feelling since ive got back from hospital and has buggered out for the evening, husband plays basketball apparently that means more to him than his wife.
rivergirl, when i was first diagnosed i took a whole year off too but i have changed employers recently and as its not a huge company you always worry about security. sounds like counselling has helped many people to put things into perspective and ‘let it out’ i need someone to tell me im not going in sane!!!
would be nice to have a pet like a cat but i dont think i could pick up their poop…
Hi Hemly
Just wanted to add my best wishes to everyone else’s. Your husband is probably doing the best he can - but a lot of men are just rubbish at this sort of thing. They just don’t do empathy. And if you’ve always been strong and capable he has probably come to rely on you and can’t face the possibility of having to be the strong one. Mine is pretty useless as well - and in fact I think he resents the fact that I need his support whereas it has always been the other way in the past. Yours may be going through something of the same. However Anne is right - why are we the ones who have to do the understanding?
Just one thought on the financial side - I don’t know if you have life insurance but some policies will pay out if you have a terminal disease. They often specify ‘expected to die within 12 months’ but they are not always strict about this. Mine has paid out and I fully expect to live longer than this (a hope shared by my onc). However when he wrote the report he said he would do it on the basis of the worst case prognosis - ie if none of the drugs worked. Touch wood they are working so far - and I don’t have to give it back if I last longer than a year.
I also went to meditation classes which helped. I didn’t finish the course though as it was at the end of chemo and I kept falling asleep instead of meditating. It was helpful though and I plan to go back. The also run special meditation classes for people dealing with long term disease and pain and I’ll definitely try those.
Where are you doing your Race for Life? I’m doing the one in Cambridge on June 1 though like you I shall probably be walking it.
Thinking of you - and hope things start to get a bit better for you soon
x barbara
Sorry - meant Kate not Anne! It’s that old chemobrain again…
Hi Kate -on the cup of tea front I reckon you get more value out of a teasmaid than most husbands. Mine will make tea in the day but that important first thing in the morning cuppa is always made by me. His getting up time is defined as mine + 30 minutes. I’ve even tried staying in bed an extra hour (torture when the sun is shining) but he still lies there snoring - only to awaken miraculously as soon as I get out of bed. Stick with the cat!