Fed up

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I don't normally put negative things on.. but feeling really sorry for myself and fed up..

I am finding it knackering bring positive and saying yes I am great, things are going well... blah blah..

Have a husband that has had a breakdown so have to keep things from him for fear of pushing him over the edge.. not his fault.. but again knackering.

Worried about catching anything let along covid. 

Tired washed out at times.  

Hair well use to be my the one thing I loved.... not lost it all but it's thin limp and lifeless... use to be beautiful curls. I would have it all cut off but too thin now.. most people don't know that I am on treatment.. can't bear the look or the how you going..

Stressed before bloods wondering if I will be ok to have treatment...  this month not neutos too low that probably hadn't helped.  

Sleep well that's all over the place..  hence why I am up doing this post st 1.38 am.

Been on this road for years.  Obviously want to stay alive but at what cost to my mental health.

It's like waiting for a train to hit you hard enough to wipe you out... I know every dies but sometimes not knowing has got to be better  than this.. 

Sorry if this upsets anyone but just have to get this off my chest.. hoping it make a me feel better.

I have got to seriously sort myself out and get a grip. 

  • Hi

    I'm so sorry you're feeling this way. its so bloody difficult isnt it. I honestly dont like the word 'positive'. what does it mean? Of course we are all trying to stay positive - who wouldnt? My word is 'hope'. I am finding myself asking people how much they want to know. Becuase you can give them the unabridged rotten version or you can sanitise it for them. And i get for a lot of people who are close to us, this is painful but we need support from loved ones too.

    I had low neutrophils last month too. the psychological impact of having an break in treatment was immense - dont underestimate it!

    but i totally hear you. You have everyone's permission to feel sorry for yourself. Let it out on this forum. We understand. i dont think you do need to get a grip. i think you need to acknowledge where you are with this and how much it stinks. i hope getting it off your chest a little has made you feel a bit better? Did you manage to get some sleep?

    I have had similar this week where i had not great news that my current chemo isnt working and i need to switch to a new one. Options are becoming limited and the oncologist wanted to acknowledge the elephant in the room. Which is painful but as i move onto the new regime, I have to have hope this one will work. 

    Best wishes to you xx

  • Thank you fhgirl 

    Thank you... still feel blurr but glad I let it all out..I did get a few hours but will hopefully crash tonight..lol

    Fingers crossed they can find something else to slow the uninvited lodger.. or have you have lodgers? Sneaky little buggers arnt they.

    At least there is still options which is great. 

    Years ago these treatments were not available and do consider myself lucky.

    Every time i5s reappeared and moved I have been extremely lucky to find it..

    My.cancer marker.had been sneaking up for ages but they couldn't find any trace of it.. it was only because I had a stomach issue and went for test and samples were taken they found the little buggers in my colon. 

    My cancwr hasn't done the norm throughout... low grade breast removed. 

    18 months later appeared on the other side of my body in my neck..  treatment in remission for years and now this.. which again is usual.. trust me..JoyJoy

    Keep us updated and my thoughts are with you..Hugging

    Thankyou for taking the time.to reply it is really appreciated 

  • Exactly. years ago these treatments didnt exist so we do have to be grateful there are more options available. 

    i've just read your profile and the fact it's in/was in remission is good isnt it? Cancer makers have not been  mentioned to me before but i have heard it mentioned with others. is this something they routinely meausre for when the cancer is in remission?

    i origianlly had cancer 13 years ago. Lumpectomy, radiotherapy and 10 years of tamoxifen which finished last summer. then ooops why are these neck lymph nodes so raised. Cancer was back. they cant find it in the breasts but its the neck now. And last week's CT scan showed spots in the lungs. i havent stopped crying this week - i am an emotional wreck. I have a 10 year old son and i dont even know if i will see him to secondary school in September. But i have to believe that i will. i have to keep an image in my head of him i his new uniform. I will do it. sorry to derail but it is so difficult to keep going. 

    Which chemo treatment are you on now?

    Have you tried any complementary therapies? I was offered distance reiki and I loved it. I've signed up for a heal yourself reiki course on the back of it too. If anyhting just taking half an hour to think about yourself and concentrate on yourself and be with yourself has to be good for the soul. And right now if the doctors and the science are healing our bodies, we need to play our part.

    Take care

  • Fhgirl...

    It's a shock isn't it.. and it takes a while to process it. Don't rush into anything.. ask about different treatments available.. question them... be honest and to the point.. my oncologist is use to me.. made her jump a few times.. 

    Orginal I had surgery and radio therapy 

    Second time chemo can't remember which one and radio therapy

    This time I am on fulvestrant (faslodex) injections and palbocicib (ibrance) tablets. Lucky to be on this treatment.. 

    Been told it should hold my cancer for 12 months to 18months.. Fingers crossed longer. 

    Haven't thought any further than that but will when the time comes.

    Cancer marker are only one way to monitor the cancer..so only one part.

    With the treatment  I am on its dropped from 105 down to 54.5 so going on the right direction.. just need to hold for a good while now.

    Excuse my swearing.. the bloody cancer is a clever bugger and find a ways to get around these drugs eventually. It's a bit if a lottery from what I have read..what works for one person doesn't for another..  so I will try anything..

    Chin up you are suffering with shock at the moment.. it takes a while to get back on an even keel.. had to do this 3 times and it doesn't get any easier..

    Let us know how you go...xxxxx

  • thanks

    i came on your thread to comfort you and you've given me comfort right back! thank you Kissing heart

    Lets all try to have good weekend - the sun is shining where I am (well we're heading into dusk now) but there has been no rain for at least a week. i offered to sew a draught excluder for the school and sewing is my happy place - my metime so i will make time for that this weekend.

    How about you - what are your plans?

  • Hi Sambob, the great bonus of this place is that you can be honest; the audience understand where you are coming from! Yes we are lucky that there are effective treatments now that give us a chance of some time, but ultimately we have lost the life we had expected to live. Grieving for that life is natural and frankly I think helpful in coming to terms with our present life. Don’t beat yourself up; have a good cry, scream or whatever works for you, and then you will feel ready to get on with living again! 
    Mary

  • So sorry to read your post / but I get it ! We try to put on a face for everyone and they think we are fine , but underneath we are not !! I have been really positive all through this second diagnosis but recently feel really fragile - don’t want to go out or mix - obviously covid restrictions cause this

    My family and I have been invited to 2 large celebrations in March - I am trying to say I can’t do this but they are telling me to get a grip ! I know I need to socialise but it’s hard with fear of catching covid and people looking at you x

    sorry I feel I’ve vented my feelings at you but I think the main thing is we need to stand up for ourselves x

  • Hi Winship..totally understand and no you go for it.. I'm a better place today thank goodness.

    I know I am struggling with the social mixing stuff outside my close family members.. I wear a mask outside full stop.. any meeting I have it on and that will not change covid or no covid as my immune system is very low.

    And isn't it hard telling people and the big part is them listening to why you aren't doing it.. My lads are brilliant no problems at all.. my daughter on the other hand is a different ball game..It's almost like she hasn't processed that I am having treatment and it's not going to stop.. we look after her 4 kids as well but not sure how much longer we will do this.. love having them but it's the germs they carry with them..

    I am going to have to make a decision about the child care..everyone is saying I shouldn't be doing it...it's too much and I am putting myself at risk..

    Hope you manage to sort your family functions... wouldn't like to be in your shoes..

  • Thankyou ! It’s just sometimes nice on here to voice your thoughts without hurting anyones feelings isn’t it? Glad you feel better and I’m sure I will tomorrow- just need a good sleep and stop being negative! I have 4 grandchildren and they are what keep me going, my husband I think is in denial - he is good at taking me to hospital for treatment but I think he sometimes does not want to think beyond that, so I forget it must br hard for him also thinking of future, I try to stay positive for all of us - anyway you take care too x

  • Good evening fhgirl,

    My Dad has MDS and I’m one of his main carers so I do all I can to take care of him etc. I’m struggling with my own well-being and Mental health too and went for a Reiki session yesterday. When it was explained to me beforehand I thought what a load of ‘twoddle’, that said I do believe you you cannot knock something until you’ve at least given it a try. Following the session I couldn’t believe just how relaxed I felt.  

    Loads of love Nicola xx