Just so tired now.

busiscoming2

I can't imagine how carp you are feeling and won't patronise you by saying I do. I just want to send you ((((big hugs)))) and to say please keep going, you have a lot of people here with some lovely advice. x

time2deal

elisebutt65 wrote: »

I've found the breast cancer and Macmillan forums, but I like it here better, and I don't want to be a newbie all over again.

Hi Elise,

I post both on there and here, and they both help in different ways. People here 'know' me a bit more, but in Macmillian there are people who understand a bit more where you are right now. The boards move slowly, so you can just dip in and out. I subscribe to the cervical cancer one, and it tells me if there is a new post.

It's also nice to give advice to people who are a little behind you, and it reminds you how far you have come. For me it helps to give people advice who come to the boards terrified, and looking for support - but also to show me how far I have come. I remember being soooo scared of a one of the early tests (colposcopy), and the overwhelming fear when you are diagnosed, and it is good to be able to say to people - I really do understand how you feel, but it will get better. You will get through this.

Also, let yourself have weak days. Allow yourself to feel sorry for yourself, and cry if you have to. Personally I find it sort of annoying everyone saying 'stay positive', or 'you are coping so well'. What realistically is the alternative!?! I'm not going to walk the streets in tears (not that that hasn't happened), or just roll over and give up.

You really do need someone who you can cry to. I cry at night, and my husband has learned to stop asking too many questions, sometimes I just need a cry. I'm hopefully approaching the end now, but actually I've had a few teary days recently, and I think that is all the being 'strong' coming to an end, and allowing myself to realise how hard the whole thing has been.

Sorry, lots of words, but overall just sending support. Trust in your doctors, and let them know how it is impacting you and perhaps they can adjust the mix of drugs to help.

And tell DS1 to take DS2 out and tell him to stop being such a pain! Or ask on of those random people who say 'let me know if there is ANYTHING I can do to help?'. See if they really mean it and say 'Actually, yes, can you take DS2 for the weekend?!'

Mrs_Ryan

Hi Elise

Just wanted to send hugs and say well done. I know how much cancer drains you, i was ill for quite a long time before and after my diagnosis and operation and it is so difficult. Best advice i can give is be kind to yourself and take it easy for as long as you need to. My hair fell out due to the anaemia i developed as a result of my cancer and my mum kindly bought me a beautiful wig which i still wear but i preferred my scarves- i still have them in all colours. However i bought a clever little thing on eBay to wear when i went to a formal ball- its like a scarf but it has elastic in the back and you just pull it on. Mine was black with little sparkles on but they came in all colours and only cost a few pounds. I loved mine and it was very comfy and looked great it might be something to consider if you want something a little different.
Keep it up... you're doing so well. Take care xxxx

sooty&sweep

Hi Elise

Didn't want to read and run. I won't lie and say I know what you''re going through because I can't even imagine.
If posting on here then keep posting ! It's like writing in a diary but this one answers back ! I'm sure you know your youngest doesn't mean what he's said but children can be horrible sometimes.
All I can suggest is take each day as it comes, one step at a time !
Can they give you anything to help you sleep ? Everything looks 100% worse when you aren't sleeping.
Stay strong
Jen

time2deal

Hi Elise,
Just thinking of you - and hope today is a better day.

catzooo

Hi Elise
OMG we have almost the same things going on right now. I was diagnosed last Sept with BC after being called in for routine mammogram at age 49. I went straight onto chemo for 6 rounds. FEC-T is that what you are getting?
I tried wearing the cold cap but it didnt work for me and my hair fell out after chemo2. The week before that was the worst - shedding hair, in my face, falling into food, worrying about how much was falling out, then had a shower and my hair more or less all came out when i washed it. Distraught does not begin to describe how you feel when that happens.
I did go to 2 wig shops but didnt feel happy or comfy with a wig. Have managed wearing woolly hats, tubes, bandanas, beanies, and sleep caps - try annabandana http://www.annabandana.co.uk/ -
Chemo was dreadful. I to do the stomach injections too after being admitted to hospital twice neutropenic.
Had the most awful mouth thrush, then ulcers. joint pains. peripheral neuropathy in fingers and toes. dry skin. rashes. mostly beween constipation and diarrhoea. chemo brain too!
My local GP has been very supportive, pls contact your GP as they will prescribe stuff to help with side effects.
I had the last chemo 4 weeks ago and am starting to feel more normal. still got sore fingers n toes. And my nails are ridged and starting to lift off. Taste buds are messed up too. Cant taste cheese, and wine and chocolate taste horrible!
I am having mastectomy and lymph nodes out 2 weeks today. Then radiotherapy after that. Am very scared of the surgery, pain and the risk of lymphodema afterwards.
I have a PICC line in now - my forearms are corded and sore. Having herceptin infusions every 3 weeks for a year at least.
Everybody says Im looking well, am very brave etc etc. But they're lying. I look !!!!. Bald, no eyebrows or lashes. Many more wrinkles.
Not brave - this is a roller coaster we cant get off.
I dont have kids, have a supportive partner, but I can see he is getting fed up now. He resents having to give up things he would normally do at to care for me. Drive me to appointments. He had a go at me yesterday shouting "dont start bloody crying again" then stormed off.
I feel very alone. stuck at home, off work, my parents and sister live 120 miles away and I dont feel up to driving so far. My sister cares for my mum - altzheimers - has to be there to get her up and dressed, shopping, washing, cleaning, so cant get over here to see me.
I was 50 in January. Luckily it fell just before chemo day so we had a weekend away in a lovely country pub. Was nice, but last year I was planning a month long trip to India to the tiger reserves for my birthday. You say your birthday falls just before chemo too? Means you should be fine to go away, have a nice meal, so get something booked then you got something to look forward to.
Crying again. I want my life back. Had enough of being ill.
Please feel free to PM me to rant, cry, moan, if you like.

GlasweJen

OP, I know it's hard but stay strong.

I had a Hickman line implanted under local and also a pacemaker, the procedures are horrible BUT out is easier than in. It's almost like your body just wants rid of it. Request the sedation of course but bear in mind that you won't need to go through that again even if your sedation isn't scheduled.

As for the brave face, you need to choose someone and let the mask slip, bottling it up will only make things worse. It doesn't have to be your husband - for my aunt it was my mum (her sister), my granda chose my mum as well, there will be someone in your social circle who deals with these situations without drama (last thing you need is drama), get them enlisted.

Good luck with the chemo, try not to think of radio unless the doctors tell you to. Focus on now and getting better.

elisebutt65

Sorry about the radio silence at the minute. Ill pop back later tonight and do an update and some replies. Just a wee bit tired at the mo.
X

Ich_2

I am having mastectomy and lymph nodes out 2 weeks today. Then radiotherapy after that. Am very scared of the surgery, pain and the risk of lymphodema afterwards.

I had my lymph nodes (left armpit) removed in November, in hospital for 9 days in total as they were waiting for the lymphatic fluid to stop draining. It didn't so I was discharged. this led to a fluid build up at the operation site that went down after a few weeks.
Apart from the first day no real pain from the operation scar and it has fully healed.
Had Lymphodema already just redness around the operation sites that went away after a couple of weeks and some anti-biotics
Now in radio-therapy (9 out of 20 treatments) as a precaution and just beginning to show signs of burning (like sunburn)

elisebutt65

catzooo wrote: »

Hi Elise
OMG we have almost the same things going on right now. I was diagnosed last Sept with BC after being called in for routine mammogram at age 49. I went straight onto chemo for 6 rounds. FEC-T is that what you are getting?
Yup, exept I've already had my surgery. The chemo is just a back up now.
I tried wearing the cold cap but it didnt work for me and my hair fell out after chemo2. The week before that was the worst - shedding hair, in my face, falling into food, worrying about how much was falling out, then had a shower and my hair more or less all came out when i washed it. Have managed wearing woolly hats, tubes, bandanas, beanies, and sleep caps - try annabandana http://www.annabandana.co.uk/ -

I've spent about £30+ on that site - LOL the stretchy scarf hats and turbans

My local GP has been very supportive, pls contact your GP as they will prescribe stuff to help with side effects.

I've been told not to use my GP, but to phone into the Unit for whatever I need such as mouthwash. I think it's so I don't have to use a waiting room full of sick people.


I am having mastectomy and lymph nodes out 2 weeks today. Then radiotherapy after that. Am very scared of the surgery, pain and the risk of lymphodema afterwards.
Are they going to check your sentinel nodes? Might be worth asking your surgeon if they do that a it saves stripping the lot out. Mine only took 2 nodes out so my arm wasn't as sore and it lessens the risk of lympodoema apparently. What sort of masectomy are you having? Are they gong to reconstruct straightaway - That has helped me immensely: having a cleavage when I look down (no nipple though)

I have a PICC line in now - my forearms are corded and sore. Having herceptin infusions every 3 weeks for a year at least.

Christ almighty! 3 weeks for a year - I'm aiming to get back to work - I can't be doing with bloody more crap for a year and I want to go on holiday!
Everybody says Im looking well, am very brave etc etc. But they're lying. I look !!!!. Bald, no eyebrows or lashes. Many more wrinkles.
Not brave - this is a roller coaster we cant get off.

Yeah - Like we have a bloody choice!
I dont have kids, have a supportive partner, but I can see he is getting fed up now. He resents having to give up things he would normally do at to care for me. Drive me to appointments. He had a go at me yesterday shouting "dont start bloody crying again" then stormed off.

Oh god; that doesn't sound supportive at all!

You say your birthday falls just before chemo too? Means you should be fine to go away, have a nice meal, so get something booked then you got something to look forward to.


Crying again. I want my life back. Had enough of being ill.
Please feel free to PM me to rant, cry, moan, if you like.

I quoted your post as it rings so true to my situation. Especially the last sentence. How the hell has this happened? Why? I just want to do the 'Poor me' thing all the time! One thing I keep saying to my OH is why the heck haven't they got a better way of sorting this out yet? Why poison our entire body to get to a few renegade cells? All the money they spend on research and they haven't found out how to switch them off yet! It's almost as though the very profitability of the drug regimen keeps the drug companies keeps chemo going - or is that the cynic in me?

Anyway, I'm feeling better today. I think I'm hitting the curve of my 'good' week now. It also helps that my OH is somewhat psychic and noticed me being somewhat down, so came on here to check my posts . Saves having to explain my self verbally I guess. And after the 'You're spying on me! tantrum, I remembered I gave him my username and said he could check up on me(ages ago) as I'm not good at verbalizing problems:rotfl:

I've had my line flushed and the dressing's off apart from the weird sticky stuff they put on. does anyone know if you can buy these plasticky dressings as they would be handy for a bath? I meant to ask for some extras but forgot (chemo brain) It doesn't hurt so much today and I've actually risked turning my head a few times without it falling off. I did have a red card through the other day and I was going to get the bus to pick it up. I managed to walk as far as the bus stop before thewave of tiredness made me turn right back home and to my bed again so I've slept most of the day again. My sleep cycle is soooo b!&&ered up right now as I'm awake most of the night (just thinking and mentally griping) and then napping on and off all day.

My arm is so sore when I wake up, but the nurse consultant has shown me some stretching exercise to do and hopefully it'll go back to normal eventually. I can follow the line of my vein all the way up though by the red streaks up my arm.

Tastebuds are back to normal and mouth ulcers have cleared so i can drink coffee again - Thank God!!! I think caffeine withdrawal has a huge part to play in my down-ness as I love my nespresso machine and it has to sit dormant for a fortnight at a time now.

I have my 3rd session next Wednesday:( but at least that marks the halfway stage. My last one is due May 22nd. I see the consultant on Monday an I'm going to ask about having a holiday in July as I can get insurance 1 month after last treatment and I am dying for some sun and sand!

My littlie has decided he feels ill tonight so I can see he's angling for a day off tomorrow. I used to do exactly the same when I was fed up with school so I've told him to go to bed and drink lots of water. He is going in tomorrow so he can forget about me letting him off! He's got his timing all wrong, cos if he'd done this last week, I was feeling so crap myself, I'd probably have let him stay home to save having to get up:rotfl:


I'm also aiming to go back to work for the last fortnight of term, which at college is the final 2 weeks of June and then the 2nd week of July is our training week. I can pick which days to go to training apart from our departmental one, which is compulsory for all. I really need to go back as I go to half pay in May. OH has said he'll pick up the slack, but I don't want him to have to do that. I love my job and I really miss work. Everyone keeps saying 'Don't push yourself' 'take your time' but it's honestly more depressing sat at home, than dealing with my students. I'm giving up teaching as of the next academic year as that part of my job is just too stressful, but I'm going to to keep the tutorial side going, even though it's a lot less pay! Means I only have to do about 5-6 hours a day for £12.5G, instead of 14 hours/day (after work prep & marking etc) for £19G. I can live with that, especially as I don't take the tutorial work home with me.

Wow! This has turned into a mega post(sorry)