Feeling alone

I have had 2 out of my 6 chemos and have been very unlucky with both. I have had neutropina spesis twice and also picked up a serious bowel infection. I have felt very ill for 3 weeks and starting to come out the other side, but still feel lousy. I sit around the house most days feeling sorry for myself and so alone. I have little energy which I am finding really hard. I’m so scared about my next chemos as I may pick up another infection. I have even considered refusing treatment, but due to the infections I am having a break for 2 weeks for my body to recover. I don’t know how I am managing to get through each day.

Welcome to the forums, I am sorry to read that you are having such a difficult time at the moment and would like to just let you know that you are welcome to contact our freephone confidential helpline on 0808 800 6000 for support, a ‘listening ear’ and information from our team of specialist nurses.

The helpline is open Mon-Fri 9am-5pm and Saturday 9am-2pm.

Kind regards

Lucy
Moderator
Breast Cancer Care

Oh how I feel for you. I was hospitalised on the first two chemos. I was neutropenic. I thought it was going to have to be hospitalised every time. I had the injections for 5 days after chemo and still ended up in hospital but on the 3rd 4th 5th and 6th I was ok. I had every symptom going as well. It will pass you can do it. I spent 5 months virtually bedridden. I look back now and am glad that I had the chemo. You will feel the same when it’s over I’m sure. You might be okay next time. Thinking of you Take care of yourself love Eileen

I had three admissions through chemo - ask them about neulasta, neupogen , GCSF all same thing really -to boost your white cells to prevent you getting neutropenia

good luck and hang in there

Hi there
I really do feel for you - we are stuck with this horrible disease and the treatment is tough. I am on 2nd cycle of TAC and get an injection on the day following my chemo. It kickstarts the bone marrow to produce white cells - neulasta. So far so good. Is this an option you could mention.
Also anyone else taking iron. I did for my first cycle but they said the bloods were good so not to take it 2nd time as it left my tummy a bit iffy. I am going for my third chemo next Fri sdo it will be interesting to see if blood count down dueto no iron.

Hang in there - I hope you start to feel a bit brighter soon. Not sure what else to say except big hug and good luck.

MuddyXX

Hi , so sorry your feeling so awful, sounds like your having a rough ride and my heart goes out to you, feeling ill for such a long time breaks down our defences to the point we feel like quitting, but dont quit.

It may not get any better for your remaining treatments, then again it very likely will, but whatver happens short term the OTHER side of them you will get better, no doubt about that. We’re amazing, us people, we can take all kinds of crap and feel the lowest of the low but once through the bad stuff we start to forget how bad it really was, the mind has it’s coping mechanisms and the ability to block out bad stuff in our memory is is one of them. Then we can feel good that we did it, fought the fight, and have our lives ahead of us once more.

Hang in there hun!! and talk to people, hopefully it will help keep your spirits up, I feel at my lowest when no ones around and I feel lousy, so I have a pity party for a while, nothing wrong with it.

Nikki

Hi there, you are not alone. I too have suffered delays and reduction in chemo strength and felt it was just me, and eveybody else was managing it without delays .I noticed from your other posts that we can get through it people have been there before us ., I have had one infection after 1st chemo in Hickman line and hospitilistation and third chemo delayed this week due to no immune sytem. funnily enough no one at the hospital has mentioned that we can get help with our bone marrow. PLEASE KEEP YOUR SPIRITS UP , and keep in touch /I hope things will soon get better for you

GOOD LUCK

Ruffyp

Thanks to everyone who has responded. It’s good to know that I am not alone. I’m having a good day today and I actually feel quite normal which I haven’t felt for so long. Some days I can see a light at the end of the tunnel, other days I spin round in my black hole not being able to find a way out.

Despite having GCSF I still managed to get neutropenic. My breast care nurse has suggested they do more regular blood tests to check my white blood cell count. Next time I see the oncologist I am going to mention this to him.

Jennyx

Hello
Good to hear you’re feeling better today. Your post reminded me of these wise words again;

“When you get into a tight place and everything goes against you, till it seems as though you could not hang on a minute longer - Never give up then, for that is just the place and time that the tide will turn” (Harriet Beecher Stowe 1811-1896)

Anneli
{hugs}

Hello Jenny

Sorry you have been having a tough time with your chemo, but hold on in there, and hopefully things will change. I am glad today was better and hope that tomorrow is too. Can you not speak to your onc, or your bc nurses and see if there is something that can be changed or done to help you through?

Thinking of you and hoping you are feeling better.

Take care
Love
Dawn
x

Having another down day today. Moan, moan!! Still wondering how the hell I am going to get through. I know I’m not alone but it’s so tough. Seeing my BC nurse on Tuesday to chat through my fears etc. As stupid as it may sound, I just want someone to take this away from me. I feel I just want someone to hold my hand everyday and say it will be ok. I have a great supportive partner but he really doesn’t understand. When I tell him I feel anxious, and he says what about…and I say everything…he says well don’t get anxious. If only it was that easy. I want to swear and shout and scream that I want my life back.

Every slight headache, backache etc etc I panic thinking so my god it has spread.

Has anyone found that chemo really dries your nose up. I can’t work out if I’m getting a cold. It’s wierd.

Finding it really hard to sleep which in turn makes everything more difficult to cope with.

I HATE THIS!

Hi Jenny

I don’t think any of our OHs understand entirely what we are going through, my hubby is like that and says your OK and it will all be fine etc. And sometimes just wanna scream at him and go crazy, but he means well.

I am the same with any aches or pains, I think oh my god its spreading somewhere else now (as have secondary liver too), think it is only natural to worry.

Haven’t had a dry nose, but about 6 days after first chemo felt really fluey like and had that same feeling again last week - this is apparently a slight side effect, so maybe that is what your dry nose feeling is. Is your head a little heavy or fuzzy? Thats what I had for about 2 days then ok again.

Anyway, hope you are OK and keep trying to stay positive and you know you will get help and support on here as much as you need.

Take care
Love
Dawn
x

Hi Jenny

So sorry to hear how you are feeling. I was very sick when I started on chemo, and had to be admitted to hospital. Like you, I thought “when will this ever end?” and I remember posting a message on here when I was very down asking if that light at the end of the tunnel everyone talked about existed ?

Four months after my diagnosis, I have to say I can now see that chink of light ! My sickness was eventually sorted out, I got used to the tiredness (somehow), and I’m now “looking forward” to my last chemo on 31st August. Ok, I’ve still got a mastectomy, rads and herceptin to go, BUT I feel so much more positive these days. I honestly never thought I would again.

Have you spoken to your Oncologist regarding not being able to sleep ? I had the same problem, and mine prescribed Lorazepam. Only 1mg a night, and I get a good nights sleep now.

Hope by the time you read this you’re feeling loads better - remember we’re all here for you.

Lots of love and a big hug

Julie xxx

hi ladies,
It is so nice (not the right word, but you know what i mean) to see so many people feeling the same as you. I have just had my 3rd cycle in the tac2 trial and i feel really awful been in bed for 4 days just dozing then awake all night, i have gone through constipation, thrush, opposite to conspitation and back again! now been to emergency walk in centre on bank holiday as i can’t wee again! and now i have a catheta put in apparently the full bladder is more of a problem than the thrush, like the other lady i have now convinced myself i have bladder cancer and am going to demand a bladder scan when i next see the oncologist. I also can’t sleep and this gives us way too much time to think. you feel isolated and along and think all sorts of terrible things then when i come on here i start to feel better and more positive as its not so scarey to know what these symptoms are common to many people. i started my journey with ‘take one day at a time’ as my moto, i still have a moto but it is ‘take 1 hour at a time’ ! well it works for me LOL.

Gaynor (Swindon)