I didn't get up until 12.0 noon, after a night of having difficulty sleeping, going over and over in my head things I wish I had handled differently over the last few years. Is this the chemo making me maudlin? I have had anti-scikness tablets today, I feel uncomfortable in a restless way, yet tired too, it's driving me mad wanting to do things around the house yet not having enough energy, I ironed one shirt and had to sit down, it's so frustrating. Hubby went to work at 6am and is home at 7 tonight, with another early start tomorrow, he has been good but says he feels like he doesn't know what to do to help, I don't think I need help I just want to get out of bed get dressed and do normal things.
I'm having menopausal night sweats still, I don't know how long they will go on for, and I have the most vile taste in my mouth which is encouraging me to eat so the taste goes away, trouble is it comes back. I feel so miserable tonight, sorry ladies, I think being home alone means writing it down might make me feel better. Does it wear off before the next chemo, or is this nothing to do with the medication at all?
LA
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Lily-Anne
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Sorry you are feeling so rubbish. Not sure the feelings are directly from the chemo but, hey, be kind to yourself here - look at all the stuff you are going through. After all the worrying and difficult decisions who would NOT be feeling a bit low? You got it sorted and, being a dynamic woman, now expect it all to happen quickly and be done and dusted. I know I did. Now you feel like crap and can see the treatment stretching ahead. Unfortunately the patience habit takes some time to build - and I did not take to it at ALL well either, by the way. You absolutely have to take it easy, despite it being frustrating. Normal isn't where you live for a while. Ironically maybe this is where you can help your husband feel he is helping? It took mine a while to get into the habit of doing the housework and stuff, but once he was doing practical stuff he stopped feeling like he wasn't helping - which he really was, simply from being there and supportive, but couldn't recognise that.
If it helps I have found that the night sweats have receded - I had my op in September and had them quite badly for a couple of months but then they seemed to go away, so did most of the daytime hot flushes, they are now far less. I also found that aside from a couple of nights around chemo anks to steroids that the sleeplessness i had after both the diagnosis and again after the op got a bit better too.i think the mind works away at things to rationalise them, perhaps. Chin up my lovely - you WILL get through this.
I'm sorry you're feeling down. I think some people - quite a lot of people - having chemotherapy have bad days and they must seem endless.
Hopefully you will feel better when your husband comes home from work. Have you got a treat lined up for the pair of you? A DVD, a clip from UTube that's amused you or interested you? A bit of news you think is uplifting?
Hopefully you can find something bright on the horizon. If you can't shake your mood over a period of days or even weeks you should talk to your GP. Sometimes all of us need a little fillip to get over the bad times in life and anti-depressants can just get you over a bit of a hump while you try to work out what's at the root of the unhappiness.
Tea and sympathy to you with a big hug.
xxx love Annie
Chemo, in my experience is, more than anything, an endurance test, I'm afraid. I remember that the whole time I felt my body had been invaded by aliens and I never felt wholly well. On the other hand, a lot of the time I didn't feel too bad and I just had to accept that that was as good as it got and get on with it. The horrible taste in the mouth goes with the territory too. I quite liked chewing on crystallised ginger. Other people have recommended pineapple.
Have you got any company you can call on during the day? You need people who understand that sometimes you're in the mood to engage with others and sometimes you just want to crawl into your nest.
I know it's tough Lily-Anne but you will make it through this.
All the best
Linda xx
Hi Lily-Anne,
Those of us that have been on chemo have all been there but you will get through it, let your husband help you... in helping you... you are helping him. On the 25th of June I posted a poem that I wrote on chemotherapy, please try to read it, you will find it on the "musings of gwyn" tag it sizes up to me what chemo was like (twice) so you can then see that you are not alone.. but we do get through it... and it becomes just a distant memory but it will take a while, the alternative to this is to have cancer (need I say more?) I don't want to be brutal... but there is "LIFE" after chemo I promise you.. and life is sweet with a capital L.
I really do feel for you and wish I could help... Lots of love and you are in my prayers x G x
Hubby came home and cooked dinner and I feel a little brighter now, don't know if it's the company or the food or both.
I don't have any friends locally, when I remarried I moved 70/80 miles away from where I lived and where my children are. Because we work such long hours and it is quite insular delivering Police courses you don't really meet anyone, quite apart from the fact I am the only female trainer in the areas I cover. Hopefully once the shop is up and running properly and I can concentrate on a new career it will change.
I talk to my cousin a lot on the phone, she is on chemo tabs for myeloma, and will be having stem cell transplant in a few weeks. she doesn't live locally either, and has been quite unwell, on and off. We were diagnosed within a couple of weeks of each other.
Planning to call my sister tomorrow, hopefully it will go well. Thank you all, it is a lift when you feel down to know there are so many kind people here to help. I hope I can offer that to some too.
I can imagine organising police training courses is a lonely occupation as you meet hundreds of people at the courses but really don't make a relationship with any of them.
I wonder if there's a support group nearby - or if not whether you could approach your hospital to see if they'd back you starting one up by handing out flyers about the proposed group. Is there anyone from Ovacome in your area?
For me having friends to call and having a dog to walk made a huge difference. Friends can really lift the spirits.
I am so glad you're feeling a little bit more cheerful, Lily-Anne. Don't know what I can do except send a hug and reiterate what others have said. You've been through so much rough stuff and you sometimes have to just sit tight and hang on......it will pass. I know it must be hard when you're in the middle of it all. If you phone the Ovacome offices, they have a network of FoneFriends. They may give you a number of someone you can chat to when you feel like a talk. I think it's Ruth Griggs who co-or donated them.
Keep your chin up! You are strong, you will get through
I found the night sweats got worse just after chemo, they were exhausting when they occurred, and more often. They reduced in severity and get less often as you go on. I think it's when you are more tired they get worse!
I was prescribed Omeprazole to protect my stomach. They had the added benefit in that they reduced the acid taste I was continually having, so it might be worth discussing with your onc if it is acid that is causing the bad taste.
I also used to get what I described as the "twitchys". Basically I couldn't settle to anything. I hadn't the energy to do anything, but my body wouldn't let me relax. When it got to that stage I sometimes took some paracetamol, had a hot drink and went to bed! This seemed to work!
I think it's quite normal to feel low at this point, I know on occasions I literally just had a good cry. Something trivial would set me off, and plain exhaustion and frustration would finish the job! I would then feel better, so long as there was someone i really trusted either at home, or that I could phone, to talk to! But it does get better. Once you have had the next chemo you start thinking nearly half way, then over half way etc, so it gets easier.
Sorry you are feeling low at present. Most of us have experienced this and yes it is probably due to the drugs. I hated the restlessness and lack of concentration or energy to do much. For me personally, I get on better with Domperidon anti sickness medication rather than the one I was prescribed. I can understand you just wanting to get back to normal and do things at the pace you used to and you will - but in the meantime make life a little easier for yourself. Temporarily adjust your routine. Don’t rush to get up and ready. Hide your make-up bag by your armchair and do it when you feel like it. Put a comfy chair in the bathroom and kitchen so you can rest in between bathing and kitchen work. Shop on the internet, this takes time to sort through. Maybe an interest, write your story, collect something. I collect coins mainly on ebay or the Olympic series in change. Think of simple things to look forward to, your husband taking you late night shopping, a meal out or takeaway in, visitors, maybe a home hairdresser or domestic help, warmer weather to get out more. Some cancer centres have lots of activities like aroma massages, exercise classes, facials, hair care complimentary therapies etc. and very reasonable. I really enjoy the company of our cleaner (I am loathe to call her that because she has become a young friend) If you are not getting much sleep (sometime due to steroids) you are bound to feel low. You could ask for something to help (I take zopiclone) or to shut out the dark thoughts a small radio with earphones is very good and LBC’s callers chatter on all night. Don’t be frightened to indulge yourself, Robinsons Fruit Shoot tangy jellies, Rowntree tangy fruit pastilles, strawberries, cherries (expensive) and water melon are all good for refreshing the mouth.
There's nothing I can say to help really..only to say you're not alone in your feelings. I am up and down more times that a yo-yo. And yes we are normal!!!
I promise there will be better days and time enough to clear the house! You need to give yourself time to cope with the results of chemo. . .you need to feel ok about listening to your body needs and when it says rest then rest.. . .i do feel for those around us who don't know what to do or say... It's not easy for any of us really... Glad you are feeling a bit better now x x
Jules x x
Hi Lily-Anne
I really do feel for you. I didn't realise how much difference having company and support made until I went home this Christmas (I live in Singapore). Being with my family and friends made life seem very different and I suddenly found I had more energy than for a long time. During chemo last year I used to talk to my sister and a couple of others on the phone, which was a lifeline, but not the same as face to face contact. Is there a local support group that you can join? I joined one last year and though I didn't get there often, it was great when I did. TAlking to others going through/who have gone through the same thing makes a huge difference. Also, one lady was a hairdresser and will wash/restyle our wigs for us, another is a yoga teacher who can adapt what she teaches to those of us who are stiff and sore from surgery, they have great speakers such as an oncological dietician... it is a great resource, do check out to see if you have one.
As to only being able to iron one shirt and then having to sit down...I know exactly how frustrated I felt at just that. What I did was to make a to do list (very simple like pay two bills, sort pile of magazines, tidy drawer) usually sitting down jobs, then feel very proud of myself when I had done them. I was especially proud of the drawer which had been a mess for ages.
I know exactly what you mean i get frustrated because i cannot do the things that i used to do in the time i use to do them, simply tasks like tidying up now take twice as long, you have to listen to your body do a little bit, rest and then do a little bit more.As for the taste in your mouth i find if i keep drinking lots of water it seems to help quite a bit. We all feel low from time to time but we just have to put our positive head back and try to get on with it, not easy i k now when you feel so crap, i to am on my own all day as my husband couldnt coe with my diagnosis and took his own life which takes some coming to terms with but time is a great healer and you have to put yourself first at the moment.x
Hope you're over the worst now. I used to feel ok the day after chemo, then it would kick in and I'd have a few rough days. Felt tired, couldn't do anything but couldn't sleep either. I had "earworms" constantly which was most annoying. The first time was the worst, after that I had stronger anti-sickness medicine and recovered more quickly. I used to suck sour sweets to help with the nasty taste in my mouth. (Sorry dentist, needs must.) Its good to plan treats for the days when you're feeling more yourself.
Hang on in there. It will pass and you will be able to get on with your life.
I'm going through a 'feeling down' period, probably caused by the chest infection, anti-biotics and little sleep because of all the coughing. For a few days I've been getting up late and then going back to bed, which doesn't help sleeping at night, so today I'm reluctantly staying up and going through the motions of veing normal, whatever that is.
Currently feeling very weary, but believe that keeping normal hours will aid getting back to feeling ok, so I'm sticking with it. I've set myself 3 minor tasks for this afternoon - nothing too stressful - but it may help the feeling of having done something.
All my children live away - the closest is 160 miles off - and apart from my husband have no othe relatives. My working life meant I acquired few friends as I worked from home and as a Project Manager I only had temporary work colleagues who I met infrequently as contact was mainly by phone and email. It's tough being isolated and not feeling well enough to do anything about it, but I'm trying. Tomorrow I'm hoping to join Slimming World as I'm about 10lbs too heavy, and their diet is good.
Please get up and try and do something, however little.
Ditto ditto ditto to everything everyone has said. I have had 5 lots of chemo 6th and final next week. I reckon that I have 1 bad week after chemo followed by 2 good weeks. I try not book to see anyone during first week. If anyone rings me they have to take me as I am and be prepared for me to cancel any arrangements at the last minute. I start feeling rough about second day after chemo, tired, not able to sleep, nauseas but not actually sick, not fancying much to eat, horrible taste, constipation etc etc etc. I know though that by 6 -7 days after chem I feel almost back to normal.
I do try and do something each day in my good weeks even if it is going to the shop for a paper. I am lucky to have lots of friends who i regularly meet for coffee or lunch. although I am going through a paranoid time of not catching any bugs. I am very fussy where I meet them and avoid crowded places. I had my 1st 3 chemo in the summer and it was much easier. I try and set myself a goal even a simple one like tidying a drawer. It doesnt matter if I dont achieve it its only me that knows.
In my bad week I am lazy and wacth tv or read. If I feel like doing a job I do it and then rest. Sometimes just getting up, showered and dressed is enough to need a rest afterwards. My advice would be listen to your body if its saying sleep then sleep. Dont bottle up feeling weepy have agood cry it you need one. Try to do it when there is someone around to give you a hug.dont feel bad for having a weep you are going through a tough time.
Try and keep postive, believe you are going to get through this. Negative thoughts are not good ones if you find yourself going that way try and think about happy times, holidays etc.
I know its easy for us to say you will get through this but we all know how you are feeling. this is a great site because sometimes if you feel alone you can read a blog and realise that you are not.
Just go with the flow and do what ever you feel like doing as each day comes but if you can get out and have a short walk on your good days then it will do you good ..I did and it helped with the aches and pains ..plus the advice from Fluffycloud on drinking plenty of water through out the chemo is really good advice ..got through 2lts a day ..it was worth the the trips to the loo ....
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Well , it's all been a bit of a winder !
Some news that has rocked my boat a little today.
A Happy Day
No chemo today due to low platelets......feeling worried for next week
Feeling rubbish
