Could I really be this unlucky?

dreamdaisy

Well that is good news, I hope the steroids continue to do their thing. Yes, there will be a toll on you but that is in a good cause, no? We're cheering you on with every stage of this hard journey. DD

kentishlady

Hi Jenny. Am so pleased to read your message and to know that your appointment was so positive. It's very difficult when you get bad reactions to meds, isn't it? Do hope you are resting as much as possible. Take care and remember we are all with you. Beryl (((()))) xx

Toots

Really happy to hear positive news Jenny, I'm so pleased that you seem to be responding so well. I know the wait will seem interminable, but hang on in there, you're doing great x

dibdab

Hi Jenny,

I am so pleased for you- good news, and if you can get on top of this without more aggressive drugs it will be wonderful. I'm sure you're positivity is helping too.

Will continue to be sending hugs ((((((((( )))))))))), positive vibes and prayers.

Deb x

thistlegirl

well I gave in today and asked the doc for sleeping tablets. My impression of a zombie was getting to be scarely convincing. I then for some reason decided to go off to do a restock shop as my cupboards and fridge were bare. I actually gave in and asked for help at the checkout and they got someone to load the belt and pack my bags for me. It is the first time I have asked but certainly will be doing it again. it left me that last dribble of energy to get the fresh produce in from the car and into the fridge.
I need to ask for help more, it makes my life easier and lets me use my energy on the things I want or need to do. My family have been saying this for years but pride is a tough thing to work around. We are a family of "Do it Elfs" this phrase started when we were young kids choosing our outfits and dressing for the day and has never left. It has meant that we can all gut and decorate a house bar the electrics and plumbing, we can all sew and cook and other skills. Although at the moment I have been relegated to design, planning and research for the latest project as I am not fit enough for the labour I wil need to rely on the staff instead!

Jenny

kentishlady

Hi Jenny. Am glad to hear you have asked for some help, you need it and deserve it too. If only we weren't all so far apart, we would all be first in the queue! I do hope you have managed to get at least a little sleep. It helps so much if you can as you then at least have a little more energy to face the day. I am thinking of you so much and wishing you well. Am sending a few more (((()))), just in case they can help you.

Take care. Beryl xx

stickywicket

Two good moves there, Jenny. Do It Elfs is a great basis to work from and has probably endowed you with much of your resilience but knowing when to ask for help in order to achieve more is also hugely important. You need your sleep and you need not to use up your reserves of energy pointlessly. It can be hard asking for help but very necessary at times.

thistlegirl

12 hours of sleep!!!!! :P

I feel much more human today, I am meeting up with friends at 7pm tonight and now feel that I can form sentences and do joined up thinking. I am going to spend the day on the couch have a bath later and relax. We are having a night in tonight so I don't have to worry about a seat in a bar or trying to focus over lots of noise, just good friends, comfy seats and poker-well we say we play poker but we mostly chat and forget who's turn it is but it is good fun.

The doc said not to use the tablets every night but I think I will do a couple of nights to try to get my body back to a good routine.

Sleep is good!

Jenny

dreamdaisy

I am pleased for you, a good night's sleep can make such a difference. Enjoy your evening, relax, have some fun and I hope you have another restful night. DD

Toots

Hurrah for sleep! So glad you're feeling a bit more human today Jenny! Enjoy yourself tonight x

dibdab

So glad you got some sleep, well done for asking for help, have a lovely "chums" evening!!!!

Deb x

thistlegirl

So the doc GP says she doesn't want me to take a sleeping tablet every night but if I take a tablet I fall asleep and wake up nice and early feeling fully rested if a but groggy for a couple of hours. If I don't take a tablet it takes a while to go to sleep and I never get into a deep sleep, i feel I am waking to a point every couple of hours and even after 10 hours in bed I don't feel fully rested.

She has given me some relaxation tracks to listen to but I don't know if that is the problem, I am relaxed, my mind is pretty much switched off, I can get to sleep ok after a bit but I don't feel I am getting to proper deep sleep for much of the night if at all.
I am having problems downloading the track but once I get it sorted I will give it a try. Part of my problem is that I still need to keep myself occupied pretty much every minute to control the thoughts so I need to be doing something right up to the point I close my eyes-knitting, reading and watching TV.

I don't know what to do, I am normally good at following Doc instructions but the lack of sleep is the main problem/symptom of this cancer fight at the moment and I will happily put up with it as I could be dealing with a hell of a lot worse symptoms.....but I am just so tired.

Jenny

dreamdaisy

Hmmm, this is a tricky one isn't it? I don't ever get a good night's sleep, I am now very used to waking up every 90 minutes or so to turn over (I no longer move naturally in my sleep). I can understand your doctor's concern but I think it's a case of needs must - and she doesn't have the needs that you are currently dealing with. Surely this matter has to be open to negotiation? DD

stickywicket

I wonder, did you ask why, Jenny? or did the GP explain why. Maybe there could be some interaction with your high dose of steroids. Just a thought.

thistlegirl

The Steroids are causing the wakefulness, it is a proven side effect. She doesn't want me to become reliant/dependent on the sleeping tablets, I don't want to either. I am not happy about adding another drug to my regime at this point but now I am feeling guilty about wanting to take it.

My GP has always been big on relaxation CDs etc and I know they can help but I honestly just want an easy solution at the moment. Any hassle is too much just now. I was thinking about halving a tablet and seeing if that does the job.

I will try to get the relaxation stuff downloaded but it of course is set up for apple software and I am more android do it is not as simple as I thought. I loaned my Ipod out and am getting it back. I am just waiting to get enough energy to focus on this long enough to fix it.

Jenny

dreamdaisy

Surely you won't be needing these once the steroids are reduced? DD

daffy2

It's difficult enough dealing with the original illness without having to sort out pros and cons of drugs as well. I do hope you find some sort of solution that suits you and the GP!
I was interested in your comments about asking for help.It's understandable that having been used to doing it all yourself asking for help is difficult - it's something I struggle with. It cuts both ways though. For many people providing help to others, whether as family and friends, staff in shops, or volunteers, is a source of pleasure and satisfaction. It is also a way for loved ones to feel that even if they can't 'fix you' they can make life a bit easier, instead of being on the sidelines watching you suffer.
Asking for help may hurt your pride, but sugar the bitter pill with the thought that the person responding to that request may well benefit from being able to help.

stickywicket

thistlegirl wrote:

The Steroids are causing the wakefulness, it is a proven side effect.

Oh I know that My eyes felt as if they were on stalks when I was on a big dose of steroids in preparation for chemo I just wondered if there might be a good 'chemical' reason why sleeping pills shouldn't be combined with high doses of steroids or if it's just a hobby horse of your GP. If the latter, I'd want to play it my own way in your situation but, if the former, better safe than sorry.

thistlegirl

yeah sticky matchsticks are most definitely in use here too. I am going to try alternate days for now and that will take me with enough tablets to my next appointment with the GP. I think she would have been specific if it was chemical as she is pretty direct.
I know the first thing she will ask me is if I have tried the relaxation stuff so if I put in place one night drugs one night relaxation then I will have a good comparison for her and she can't say I haven't tried.

How long did they have you on steroids for and what dose before chemo, another month or so before I know if they need to step it up to chemo

Jenny

stickywicket

Not long. It was all about twenty years ago now, for breast cancer, and routines differed even then between hospitals and cancers let alone trying to compare then with now.

For me they just did the mastectomy then gave me the high dose steroids to build me up for the chemo. It worked I hope you come out of it as well as I did.

phoenixoxo

Hi Jenny,

Just catching up with your thread

I had enough trouble sleeping while on 30mg pred, so it must be really rough for you. I think I tried a 'Forest Ambience' CD at some point, but I got a bit too excited about it, imagining an assortment of 'forest friends' and making up songs about them. Alternate nights on tablets sounds like a good compromise and I hope it's working out for you

Best wishes,
Phee

thistlegirl

So last night I spent 5 hours in A&E but this time it was for my dad not me.
He has been given the all clear but he was having "Twinges" They did all the tests and more so he is fine but what a scare. He has some other existing conditions and they think it was that but they needed to make sure and I am happy they did, a very long day!
I did not have any trouble sleeping last night and actually most of this morning too!

I think I spent more time in hospital yesterday than during my whole tests and diagnosis weeks of this cancer :roll:

I have been doing well when I can sleep and still doing my healthy eating and juicing diet and feeling the benefits. I am now getting the increased appetite from the steroids but so far been able to keep the food healthy but I am hungry more and quicker.

Every day the lumps get smaller so it is great to see the improvements just need to be patient to get through the full 8 week course and get the tests done to check that it has worked or if I need Chemo. I think I might get my hair done this week if I continue to have the good days, we'll see.

Thanks again for the hugs and support, I do appreciate them all
Jenny

DebbieT

Hi Jenny,

Firstly I'd like to apologise for neglecting to post for so long.

Wow girl ure tough
You are certainly grabbing this cancer malarky by the short & curlies (as my Dad would say )

Regarding the sleeping tablets, I take the same view as I do with long term pain killer use ... So what if you become reliant, you need them!! In your case it's temporary while ure on steroids & if she keeps leaving you to miss out on stage 4 restorative sleep, with the stress ure under too, she's putting you at risk of getting fibromyalgia!!! That is NO joke believe me. If you need the help of a tablet for these 8wks or so then fight for it huni. Which ones did she give you & at what dose btw??

You are showing such remarkable maturity & strength throughout all of this, I'd wana curl in a ball & cry. Ure parents must be amazingly proud of you I'm so glad to hear ure Dad was ok in the end, it's always best to be safe than sorry.x

I remember how hard you found that initial post ... I'm so glad you were brave enough!!!

Masses & masses of squishy hugs. ((((((you))))))

Xxx xxX

kentishlady

Hi Jenny. You are doing so well. Just carry on with all you are doing. I often think about you and so admire your courage. Hope you can manage to get your hair done, how about a re-style if you fancy it?

Take care. Beryl. xx. ((()))

stickywicket

thistlegirl wrote:

I am now getting the increased appetite from the steroids but so far been able to keep the food healthy but I am hungry more and quicker.

If I've got this right, hunger signals and thirst signals come from the same area of the brain and, as we're often not good at interpreting them, we can mistake thirst for hunger. If I ever feel hungry between meals I always brew up and usually that's enough. If it isn't I'll then have some fruit. Works for me

I'm glad the news on your Dad sounds good. Hospitals are always exhausting places. I think I usually underestimate the amount of distance to be walked but also there's the stress factor.