Have had a few really stressful days and I think it finally got to me. So thanks for listening.
If you have seen my other posts, you’ll know that I just had a scan and the results. Generally good, but there are 3 areas I’ll need to keep an eye on. Not bad about 7 cycles of Xeloda. Xeloda is believed to be one of the “softer” chemo and lots of relatives / workmates (and probably myself) are expecting more from me… now things are stable and I’m not as bad as before, so back to “normal” life. WRONG!!
I had people calling me lazy when I’m tired and struggling to get out of bed in the morning and when my Xeloda feet are so uncomfortable and painful that I struggle to walk. (just had the cycle adjusted, so hoping that will improve).
I work part time from home as well. But sometimes chemo fatigue and chemo brain hit me and I just can’t do it. So, on a good day, it doesn’t matter it’s a bank holiday or weekend, I try to make up the time lost. Then what? I have been on the end of lots blame and finger pointing when things go wrong. But actually, the support and communication I’ve received in the last 2.5 months have been appalling. I told them I was a bit stressed because of the scan. Then NOTHING!! Not even a word of when the scan is and good luck with the result. It was fine before, but ever since I started Xeloda, things have been going down hill. I don’t really know whether it’s them or it’s me! I have thought about giving up job altogether. (Can treatment get any easier after Xeloda???) But being in my 20s, I don’t really want to take the ill health retirement option - not yet anyway.
I’m usually quite positive and have shaken off my “blues” fairly easily. But recently just couldn’t get out of the low mood. Tried to contact my psychologist again, got an auto reply saying he won’t be available until March!!! Guess I can go back to my GP and see whether there’s another psychologist is available earlier.
Hiya, sorry your post seemed to have slipped through the net so I’m bumping it up for you. Really sorry to hear you’re having such a rubbish time. Your work colleagues sound pretty rotten. I think its a great idea to see ypyr GP to access a new psychologist. If you don’t get any joy, maybe a charity like the Haven or Penny Brohn could help access one more quickly, or your local hospice? I’m not sure what work you do or what type of organisation you work for but could you consider ill health retirement from it with a view to doing something else, even voluntary work if your finances allow? I suppose its a tricky one to balance.
I am sorry you feel so rubbish. Believe me it is totally normal to feel like this from time to time in our circumstances.
Having secondary bc is so incredibly hard at any age. In your 20’s it must be unbearable,
Maybe you have been strong for too long? Have you got the support that you need ? Also do the people at work understand how traumatic and all consuming this all it, particularly dealing with scans, uncertainty and all that goes with it ?? Few people seem to understand secondary bc even people who are supposed to be close to us.
Who has called you lazy ? Colleagues or friends ?? Maybe it is time to have an in depth discussion with work. Maybe ill heath retirement is something you could discuss with them to understand just how bad you are feeling.
Are you in touch with a hospice ? They have counsellors and psychologists on the palliative care team. If you have never spoken to them before dont be scared. They are wonderful and will definitely be able to help. If there is not one near you should be able to see a Macmillan nurse.
Take care, look after yourself and keep posting. Just that in itself helps. I am sorry nobody replied. At certain times posts do get missed.
Julie xxx
It is definitely NOT you!! You can only go on for so long, doing so much before you need a break - and that’s when you have got support from work colleagues and friends etc.
Although I have bone mets (as you probably know), I haven’t needed any chemo since my original lot 4+ yrs ago and I have had a couple of meltdowns since then. The first one was after I tried to go back to work on a phased basis. Everyone was very nice but as soon as I went back I knew it was wrong and I couldn’t cope. After 4 weeks of doing 2 half days a week, I went off sick again. My surgeon and onc both said I had gone back too soon even though I’d had a year off and that I may never be able to go back because of the effect of the treatment. I thought I was being a real wimp but the onc said it is like PTSD - you hold it together for so long and are strong for everyone else but then you come to that point where your body says it’s had enough and you need to de-stress. I ended up applying for and getting ill-health retirement, never having gone back to work again. I was 43 at the time and although it took a lot of adjustment and I’ve had guilt feelings etc, it was the best thing I ever did and I love my new ‘normal’ life.
The second meltdown I had was a couple of years or so ago. There had been a lot of serious illness in the family, the side effects of zoladex and arimidex were unbearable and I’d just had enough. I wanted to run away from everything and everybody and had sort of worked out how much money I needed in cash to escape with, fill the car with petrol and vanish so no-one knew where I was. As it so happened, I had a routine onc checkup due, went to that, saw the onc and burst into tears. She knew that just wasn’t me, had a good chat and put me on prozac to help with se of hormone stuff. That worked and I gradually felt better. I’m so glad she is a very understanding onc! Every so often I do have a ‘wobble’ and have to remind myself that it’s all part of the treatment and every day life.
Sorry this has all been about me and I feel very selfish writing it down but I hope it has helped you see you are having perfectly normal feelings, especially after all you have been through and have to continue to put up with. Letting off steam is good for you and on here you know it is amongst people who know where you are coming from. Why not ring the helpline on here tomorrow if you don’t feel like doing anything as drastic as packing in work etc!!
Hope things improve for you very soon and join us on secondary chat on Tues evening.
So sorry to see what a horrid time you’ve been having and hope that talking about it here will help a little.
As the others have said, it is quite normal to feel like you do specially when people just don’t know or understand what you are going through. It sounds like the people at work think it is all over and done with, perhaps you need to talk to a friendly manager and explain that this may be a ‘softer’ treatment but it’s still hard and still has side effects and you’ve still got secondaries…!!!
If your pschologist is away I’d definately go to GP, Macmillan, hospice, BCC helpline. We are here for you too but I think you need extra help and support at the moment. Don’t be so tough on yourself, you’ve been through so much and have coped so well, maybe you need to take some ‘me’ time and just look after yourself.
Do come and join us on chat on Tuesday, we are a friendly bunch and as well as supporting each other we have a laugh.
Be gentle with yourself Miao, sending you lots of love xx
Hi m1yu
I’m sorry you are feeling so low at the moment but, as the others have said, I think it gets to us all at some point. This is especially true when, outwardly, we can be so ‘strong’ and coping so well that others don’t see what we have to put up with. I had a similar meltdown last year when I changed jobs, due to redundancy - no payout as I was self employed I moved to another company to do the same type of work and lasted just 1 day! Unusual for me as I’m not a quitter. Just goes to show how we struggle on but do need to take a break, recharge our batteries or talk to a professional. I hope you do get some good support through your GP and also know that we are here to support you as well. There is a recent thread on here about ‘spoons’ which is worth a read, it might help you explain to your colleagues how difficult life is.
Hugs
Nicky xxx
Hi m1yu,
So sorry to read your thoughts and I kbow hao hard it is to kep going but this site is so good and encouaging and always some-one to see your point of view. Don’t be hard on yourself, tyr to do liitle things and then pat yourself on the back that you have achieved it.
Being strong isn’t always a virtue. If people ask to help, let them they really do mean it.
The “spoons” reading is very useful and expalins things to people who don’t understand how we all feel.
Loads of ,love and hugs
Rosie xxx
Hi m1yu
Just seen this thread. Sorry to hear you are so low. Just to echo what others have said, it’s not you. Your body has been through a lot and is still going through it. That’s just the physical side. Mentally it’s all very difficult too. I had trouble at Christmas. The festive season passed me by completely I’m afraid.
The spoons analogy is very good and a lot of my friends have read it. One even asked me how full my cutlery drawer was the other day as she wanted to go out somewhere with me lol.
Off to sort out my dressings now in prep for my rads in a few hours.
X Sarah
m1yu, I have just seen this thread you started and will write to you on here soon, I am just heading out the door to go to the hospital for my Zolidronate but will be in touch with you as soon as I can. Meanwhile just to let you know we are thinking about you and send you some hugs. It is hard isn’t it. Love Val
Thanks for all your replies so far and for those that helped bumping it up!
Saw nurse today for Zometa, too (Val! hope yours went OK.) Had a chat with her and she was great. So, I’m feeling better already after all your support. Was thinking of ringing my GP after the nurse visit but think I have survived the latest meltdown. But for now, I think I’ll save that until a later date.
I have emailed work to request my working hours to be further reduced starting Feb. I’ll see how that goes. Should I find any more problems, then it’s back to sick leave!
Thanks girls,
xxx
P.S. Always busy on Tues nights, so can’t do the live chat:-(
Sorry you’ve been having such a rubbish time. People are so concerned at the beginning and then I think when they see us walking around and doing normal things like laughing (“How can you laugh when you’re terminal?”) they think everything is OK.
What kind of work do you do? I find that sometimes the ‘thinking’ stuff is harder than the physical stuff. When I get into a really black mood, I end up thinking that nothing is worthwhile and what’s the point and then I can’t concentrate or be bothered with anything - just sit staring into space and then afterwards, beat myself up that I’ve wasted precious time.
Sometimes I think the stuff cancer does to my head is worse than what it does to my body.
Hi Miao,
A Mint mate here! Just read your e-mail so wanted to see your rant too!
You have been soooooo strong and, some days, you do need to lose it or burst.
keep positive but also let the steam out and we will all support you xxx
I’m glad you are feeling a bit better.
Yes my Zolidronate went fine yesterday. Hope yours did too. But I need to have bloods checked again on Wednesday in case I need a blood transfusion. Think I will have to drink lots and lots of red wine and eat masses of chocolate to raise my HB!!
The bit you wrote about friends not understanding and telling you that you are lazy is just not on. They should know better so glad you came on here because we do know exactly how you feel especially when you want to do stuff but you just can’t. I am experiencing the same so you are not alone and I am sure the rest of us with Secondaries will feel like that too at times.
Some of my own friends have been a bit distant. Sometimes I feel a bit isolated and on my own until I found out that they were dealing with BIG problems themselves. Other friends knew I was often feeling tired and in bed resting and didn’t want to disturb me. But a phone call now and again would have been nice and a chat to hear what they were up to would have been good. I found for a while that I was doing all the phoning so I got a bit annoyed about that.
So Miao, try to take one day at a time and more importantly LISTEN to your body. If it is telling you to rest, just do that and rest. I retired early from my job ( but I am years older than you) and it is the best thing I ever did. It took away the stress of trying to cope with something I couldn’t manage any more. Don’t rush into anything. Try to take a day at a time and you will know what to do eventually. Hugs Val
I moved to another company to do the same type of work and lasted just 1 day! Unusual for me as I’m not a quitter. Just goes to show how we struggle on but do need to take a break, recharge our batteries or talk to a professional. I hope you do get some good support through your GP and also know that we are here to support you as well. There is a recent thread on here about ‘spoons’ which is worth a read, it might help you explain to your colleagues how difficult life is.