In shock
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Edi, I cannot do porridge as doc has me on gluten free diet for wheat intolerance. between the vegetarian thing and the wheat intolerance thing and the chemo thing, I'm down to potatoes, Chex cereal and GF soda crackers. It's hard to get nutrition from that. A good friend is bringing over some lentil soup this afternoon so that will help. If I was feeling better I could play Ring Of Fire, upload to YouTube and you could watch it, but maybe some other day, not today haha. Would have to get the wig out.
I have been invited out for Christmas supper with friends but it will depend on stomach I guess. I have some very good friends, including the one who is bringing me groceries today in -23 weather. She lives a good half hour from me too. She is a saint. And I have a present to open on Christmas day, thanks to our beloved Websister, who I hope is on her way to a great Christmas in BC with family.
Okay, if anyone really wants to know, the 3 sennakot tablets worked, but not without some serious discomfort first!! Going to lie down again.
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Benny< glad Sennakot worked but can just imagine the pain ooowww ! Gosh your diet is limited no wonder you have problems. Just get that lentil soup into your tummy as quick as possible. My all time favourite soup !
Your friends sound like an incredible lot of people. I too have a lovely support network of friends and they make all this bearable don't they ? I am crossing everything that you feel up to getting out Xmas day, a change of scenery will perk you up.Will raise a toast to you and to a far happier Xmas next year for all the Warriors.
I have got to have that song on youtube please please, as soon as you feel up to it. lol
According to my mobile phones world clock, it is mid afternoon where you are, almost bed time here. Hope your sleep is peaceful tonight and not too damp.
Are you lactose intolerant too ?
Nite nite, Edi x
i
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Edi, I think some of these chemo drugs cause serious emotions after awhile. This happened to me the last time too, I remember. I don't know which drug it is but it makes me very emotional when I withdraw from it. I'm sitting here crying for my mom who passed away in 2000. Must be the season, I guess. I hurt and I'm sad and I wish i had my mom here. She would be in our old kitchen now cooking and baking up wonderful things for Christmas. The kitchen would be warm and festive and the smells would be divine. The tree would be up, the lights would be shining softly and music would be playing. The presents would be under the tree and the cat would be playing with the ornaments again, causing my dad no end of comic relief. Both my parents are gone now, there's no tree, there's no lights, there's no smells eminating from the kitchen. But it is what it is. This is a shitty Christmas, I have to be honest. I'm sick, I have no hair, there are sores in my mouth, life is very different this year. But next year will be different. We'll have hair and we'll be healthy. As for right now, I have a roof over my head, the heat on, the cat beside me, the guitar, and enough potatoes to get me through the next few days. It could be worse, right?
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Hi all, sorry I have been MIA for awhile, but chemo #4 is kicking my butt. You have all been in my prayers especially Benny. I'm so glad this one is going better for you! BTW I get the Neulasta shot after every chemo. It costs $6,000 here!! They give it to me to take home and inject the next day, you can imagine how weird it feels to be carrying a $6K item in my pocket, LOL. Injecting it is no big deal, the needle is so tiny you don't even feel it, and it stings only a little going in, fades very quickly. I have had no SEs from it at all, I take the Claritin and it must be working. Have some body aches for awhile but I think it's the chemo to blame, not the Neulasta. None of the terrible bone pain that some have reported. And it's definitely working, my WBC counts are going up every time.
Yes this will be a not-much-fun Christmas for us all, but it's just one out of many and we will all celebrate together next year when this is all behind us and we feel good again. :-) The emotional roller coaster is so tough, I just try to take one day at a time and don't feel bad when you have "down days", just keep remembering "this too shall pass" and tomorrow will be better. Hugs to all!
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Benny, Have just come downstairs and logged on, it is three in the morning and I so want to be able to do astral travel and give you a big hug.
I too feel like shit, peeing every hour and pain horrendous. This happened last time, thank goodness have a doc's appointment first thing.
Your words paint such a wonderful picture, Mum and Dad sound really lovely. This is a bad time of year to be unwell but next year as you say please God we can look back and it will just be a memory.
My Mum used to wake us on Xmas day with " hark the herald angels sing" belting out from her record player. Then like you a day of good food and laughter. Her picture is on the wall at the side of my chair and I look at it so often now and wish for just one more chance to talk to her.
I have DH and the children but this is a long and lonely journey we are all on. If one more person tells me how well I am coping I will punch their lights out ! I am not coping, how can we ?
I am crying too, but hopefully the tears will wash away some of the despair and pain. Our Mum's are still with us in our hearts and they will get us through this.
Edi X
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Jennie, lovely to hear from you, no 4 in Jan for me then halfway through.Got to take each day as it comes, just some worse than others. x
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Benny i am an emotional teary wreck when im coming 'down' from the steroids...terribly down I just cry at the drop of a hat. Unfortunately this too will pass.
This Christmas as emotional as is...I need to be strong for my son...he is so excited...thats whats keeping me going through my no hair, shedding skin, added kilos, no taste, risen nails! But this time next year we can look back on this journey we all took and enjoy christmas and many more to come.
Benny & Edi your mums would be looking down on u girls....making you strong and helping you both get through this.
Your christmases sounded so precious and memories that will be in your hearts forever
Take care warriors x -
Traii, you are Cyber Mummy's little ray of sunshine ! You are in a worse state than me and still being positive. These flippin steroids have a lot to answer for. Honestly didn't realise that is why I fell to earth with a bang.If my mobile is right early evening with you ? DS must be so excited, hope he sleeps for you. Tomorrow he is a big boy too. Give him huge hug and kiss from me. Born on such a special day.
Benny hope you have perked up a bit ?we got this sister, next year all on beach with traii x
Edi XX
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Oh Edi....I guess regardless what we are going through we just have to bare and grin it all...this will pass
Not sure what CMF will be like steriods only as IV thank goodness
Correct its 830pm here...we are now at my mum and dads house...DS just got his birthday present....a go kart....it is so cool I could even fit my big bum in it and go for a ride...not fast though didnt want my hair to fly off. Lol
Forsure ladies this time next year ... trip to the beach with meeee -
It's such a tough time but there are things to be thankful for. WE ARE HERE! We can do this. Next year it will be different. We have each other and thank god, no one understands what we are going thru except us. We need each other ! We got this girls. We all have our guardian angels wstching over us they never really leave. Moms, dads, brothers , sisters , nieces nephews friends. They are with us!!! I believe it.
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Traii< go kart ! I am so jealous of you having a go, my brother had one and wouldn't let me near it.x
Dakota, of course you are right this too will pass, just in the middle of the night everything seems so much worse.x
Been to Docs, urinary infection AGAIN ! he reckons onc has said this may happen. Got tablets like bullets, there is no way I will forget to take them.Poor DH was awakened with mug of tea and me looking all pathetic wanting a lift to the surgery.Thought it would be packed out but nice and quiet.
Had a quick whizz around the shops while waiting for pharmacist bought silly bits for GD's, getting excited now YAY.
Laters Edi xx
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Glad u got ur meds!!! Feel better!!! I know it's hard in the middle of the night it does suck so of the time but its gonna be ok. Have a fabulous couple of days warriors!!
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Holy crap, been up all night with the worst sore throat I've ever had. And the furnace is running constantly blowing hot air which isn't helping. My intestines, my esophagus, my lungs, my throat, my nasal passages, all inflamed and dry. Can't seem to get enough water in despite drinking. It is so uncomfortable. Temp is 36.6 so that's okay. It's going to be an uncomfortable day. It feels like I can't breathe. I don't know how I'm going to eat with this raw throat but have to eat something. Water is not helping at all???? It's not an option to go out to doc as it's -23 C with windchill of -32C. I don't know if I should take my Symbicort inhaler or not as that may cause worse problems. Oh dear, when will it end? I can't even talk. It feels like my throat is going to close up??!!
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Benny, you poor love, have you dishes of water dotted around to moisten the air in the room.
Try pieces of ice melting slowly in your mouth to ease dryness. Warm milk helped soothe my sore insides last night too. Put sugar in drinks to keep up your levels or you will feel even worse.
Can you ring any kind of help line at the hospital for advice ?
Edi x
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I had some awful mouth and throat sores felt like I had shards of broken glass in my mouth and throat. Couldn't eat or drink without horrific agony. Call the Dr they can call a prescription in and maybe a friend could pick it up. A compounding pharmacy can make a mouth rinse with lidocaine it helps a TON not with the dryness but the pain!! There is over the counter biotene that helps too! Do it soon though or the holiday could get in your way
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lesleyanne, hope Benny reads this and acts on your advice. x
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I just called the oncall emerg line and they're going to call me back. I can't eat because it's so raw and it's just sticking in my throat. Intense pain. I tried to eat some milk-saturated corn Chex cereal but it's just sticking in my throat, it's not going down. Even diluted apple juice is burning. I have to eat but how? Hopefully they call back soon. Oh pain. I tried a few raisins too but won't go down.
Edi, I filled the bathtub with water and will just let it sit and hopefully humidify the air a bit. This is going to be a long day
Temp is still okay at 36.8 but I am soooo uncomfortable and breathing is difficult. Thanks for being there Edi and Lesleyanne -
There is a prescription stuff called magic mouthwash. Lidocaine, benadryl, maalox and some other stuff. But as you say the weather is nasty. Do you have any maalox? It might be a little too minty but maybe just rinse out a little with it maybe diluted. Pureed stuff, very milky mashed potatoes, plain. Maybe (I know sounds terrible) baby foods maybe the ones for the older babies. I've heard avocadoes suggested for their fat content. Light salt water rinse like for sore throat. Another thread has gone thru this recently from rxn to CT contrast. She is much better and getting chemo constantly for colon CA. On the Middle Aged Women 40-60ish. But it has taken her a good 2 weeks but think she had an extra whammy from the contrast rxn too.
Have you read "tips and a shopping list for getting thru chemo" on here? It's on my bookmarks as favorites if I ever need it. Look at your tongue b4 they call back. Is it normal/pink or white coated which would be oral yeast and need Nystatin prob. swish/swallow if throat that sore?
Pasted off another website
Saltwater Mouthwash
- 16-ounce bottle of water
- 1 teaspoon salt
- 1 teaspoon baking soda
Keep a bottle by bathroom and kitchen sinks.
Rinse, gargle, and spit after meals, before bed, and anytime your mouth feels dry or sore.(((HUGS)))
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Luvmygoats, will make up some potatoes and mash them. I had some salt water here all along and was swishing with it regularly but didn't help. I did read that tips section way back but will re-visit it. I sure hope this doesn't drag on for 2 weeks as I won't last, no way. The lower intestines are okay today, just the upper is screwed up. I took some Gaviscon a few hours ago, didn't help at all. Tongue looks normal to me but I'm not sure. I don't see anything in my throat (white) other than it's really red and irritated.
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Wow, I sound like Johnny Cash. My voice is raspy and low.
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Doc is ordering lidocaine mouthwash but not sure how that's going to help my esophagus and eating? Ouch, ouch. Sorry to complain so much but esophageal pain is staggering.
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Benny, admit it you are just getting ready for my " ring of fire " video.:-)
Can you have eggs ? baked egg custard, just eggs milk and sugar is really slippery. Have you any ice cream.Maybe fruit jelly. All things my mum gave us for sore tubes.
We will never leave you and hopefully emergency line will get back soon.
will check in, in an hour x
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Doc has ordered 'Dr. Acabuta's mouthrinse' whatever that is. He thinks it's mucositis and could last a week (OMG). Told me to take codeine and use inhaler to breathe if needed. Keep an eye on temp and go to emerg if hits 38. Oh please no, no hospital this time. He also said there's a flu going around and this is how it starts so that could be bad. Wish me luck. If I end up in the hospital again I'm done, no more chemo, I can't take it any more.
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For my sisters. Why?
Why oh why did this happen to me,
perhaps it was always meant to be
I have known love and also pain,
I know I will feel it all again
I have known joy and also sorrow
and yes, I WILL have a new tomorrow.
A warrior who has fought this fight,
walking into the future healthy and bright.
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Edi-
That's great!!!!!
Benny-
I so hope u feel better!! -
Benny, glad you spoke to someone, do take codeine you need some pain relief.Hope you haven't got the flu.
My youngest daughter rang to say GD has vomiting bug also her husband the same. Novovirus is rife here, don't want to be horrible but hope they don't decide to risk a visit tomorrow.
Boxing day would be much better and hopefully they will be better by then, Next year we are definitely going away just find it all so noisy and stressful right now. BAH HUMBUG lol.
Dakota, glad u like it. Hope your plans are all going well and you are ok x
Lesleyanne, luvmygoats some great advice hope it helps our Benny. xx
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Ah - Dr. Google says similar to magic mouthwash (Dr Akabutu). One recipe says saline, Cortef (a cortisone), lidocaine, glycerin and Nystatin. I would not be swallowing any with lidocaine in it. But this might be enough to get you started. You still might need Nystatin prescribed for thrush. Just keep at it little bits at a time, milky sweet warm, not hot, tea. See if colder or warmer is better. Any chance you can puree some of the lentil soup, thin with cream?? (((HUGS)))
Edi - sorry DD/GD are sick but you're right, not what you need. DH has a cold but went on to work today (retail though doesn't have a lot of public contact). I've got some frozen pork steaks out thawing as well as some leftover ham. Making the yummiest buttermilk scalloped potatoes that I could just live on. Will have to find a vegie in the freezer; think I have some brussel sprouts. (((HUGS, TOO)))
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Benny - Checking in to see how your doing today. We've had about 2 inches of snow, I know not much by your standards. (((Lots of HUGS)))
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I'm hanging in. The last 48 hours has been really painful, literally counting the hours. Thank goodness for codeine. I thought I'd start decreasing the dose last night; maybe not such a good idea yet. It's 0342 and I'm awake and in pain. Think I'll take a full dose at 0400 and go back to bed. Thank goodness I got that Neulasta shot. So far temp has stayed below 38. It's day 8 now post chemo tho'...... could it still go up or am I in the clear?
Hope everyone had a good Christmas? Luvmygoats, it is -24 celsius with a windchill of -34 right now. And snowing a bit. I feel imprisoned by pain and bad weather.
THIS TOO SHALL PASS. It just seems to be taking forever.
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luvmygoats, , hope your xmas was special, buttermilk scallop pots sound good, may I have the recipe.?x
We had xmas dinner at the local pub with my lovely employers, they invited DH and I to their family celebration. So kind of them, children all went to their in laws but came in the morning for present opening.:-)
DH dressed as santa and came down the stairs with two sacks. Think their Mummy's enjoyed it as much as they did. After a while he said he had to go back to Lapland, as he walked out of the door smallest GD yelled" bye bye Papa,"we all just dissolved into giggles.
My girls posted pic on facebook of me kissing Santa under the heading " I saw Mummy kissing Santa Claus "lol.
Benny, oh sweetheart, glad your temp stayed good, Neu shot must be doing some good.Hope things improve today. Have you managed any soft food yet ? You will get through this. Take that painkiller, try warm sweet drink then sleep. ((( hug ))) x
When you have all stopped eating drinking and being very merry, would love to hear how you all got on.
Laters Edi X
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