Just when I was coming to terms with only two more weeks chemo and know I would miss it the clinic has just phoned to say my blood test is not good. Plaquettes (platelets) are down again and I can't have the chemo this week. Next week is my last one anyway so with the CA hardly moving this last six or seven weeks I'm at an all time low. The nurse said there's nothing they can do about the low count but just wait but next week will definitely be the last. Surely I can do something to help boost them up. They can boost up the whites with neulasta but not the plaquettes apparently.
I don't even want hubby to hug me. I've emailed my Cancer Support Counsellor as she usually phones on Tuesday after chemo and I don't want to talk to her either. I just want to crawl into a hole and disappear. I've had relatively bad news for the last two weeks and this has toppled me into a spiral of self pity. It's not like me at all. Please help.
I'm going up to bed for a big sulk. I feel sorry for myself and I don't care that I do.
Kryssy xxx
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Oh Kryssy...you have had a rough time recently. If you need a duvet day I would have one. The weather is pants anyway. Hopefully you will be able to complete the chemo next week. It must be demoralising not to have a good dip in the CA125...but please don’t lock yourself away long term.
Aah KRyssy I just posted you a reply on my post and then picked up this straightaway.... sorry to hear your platelets are not good for treatment, like me I expect you were really hoping you'd make it to the end...
What is your count ( to be honest I am not sure what it means I thought it was something to with inability to stop bleeding??) mine started at 258 16 treatments ago and has gradually crept up to 376 , but always told I am in the 'green zone'
My CA 125 came down rapidly from 5000+ But now levelling out in the two hundreds. Somehow I don't think it will move down much more.
Well I am sending you a virtual hug Ike it or not! hang in there, and after your wallow and down patch let ppeple back in to support and help you.
I have replied to you all below but as you asked, my plaquette reading is 60. Over here it's minimum 150 and maximum 400, so it sounds as if it's the same for you and you are well in the green zone. Mine was 94 last week and it's been dropping every week. I was on reduced dose carbo for the last two weeks as it was and no it's stopped altogether. My red blood count is up ever so slightly but my whites are down. Yes, the plaquettes are made in the bone marrow and allow your blood to clot. I have a little ulcer way up in my nose. Had it for years and it never bothers me but it has been bleeding constantly for the last three weeks - sometimes not a lot and sometimes in torrents. probably, the plaquettes are not allowing the ulcer to clot over.
I am amazed that some of the girls, and you, had such a high CA to start. Mine was 385, which is nothing in comparison but I am still stage 4B. It is now 132.5 with just a drop of 19.5 in about 6 or 7 weeks. I doubt it will be any lower by now. But, thanks to you and the other girls I'm more optimistic now. Sorry I had a big moment. K xxxxx
Good luck tomorrow Janet, will be thinking of you. It's a long haul but seems to be worth it and you've done so well. I'm suddenly very tired even though I got home much earlier than usual. Am just drinking a hot drink and then lights out.
Try paw-paw fruit or the dried leaves? It's had some good reports. I've been taking it but I wanted it for the neutrophils really but it seems more effective on the platelets. I thought your chemo would just be delayed by a week if this happened, not that the total would be shortened.
Have a good rest in bed and wallow for a while. You have had a string of bad news. At least if you're not having treatment tomorrow you could have a small pre-Christmas drink.
I'm sure some others will be along here soon who've had this happen to them.
I’m sorry to read your chemo plans are scuppered. I don’t know much about low platelet boosting. I wouldn’t worry too much about the CA125 mine went up all through chemo it’s higher than it’s ever been but scan looks okay. Your scan will give much more info can you have it moved forward?
I know it’s hard when you put a lot of faith in it but this doesn’t mean there are no other options. Your body much just be ready to reboot itself without chemical help
Hope you feel better this evening. I’m around if you need to talk
Somebody said papya...I think sesame seeds or flax have helped...but don't overdose on flax seeds like me(!) see recent post love C X ps have had some since so am not allergic!
Hi Kryssy, Sorry to hear you are so low I do understand I need some major dental work but have not been able to have it while on chemo so my oncologist is giving me January to have it done, then back on chemo first week of February .
I went for a blood test yesterday and my platelets are far to low to have chemo or dental work done ( platelets down to 46 she said that it would have to be at least 100 befor I can have the dental work, I need to get them up so I can have the work done in that break.
As Helen said Paw Paws and the juice or the leaves made into tea may help, I did google ( I know stay away from Mr google) I found this advice on foods that may help.
I hope you can recover quickly and finish your chemo do take care..Lorraine xxx
Hi Kryssy. You are such a wonderful support on this site.... to think of you feeling so low makes me ache for you. However, you are being honest about your feelings. And that is a good thing. Face it head on, if you need to sulk, sulk. If you need a day in bed, bury yourself under your duvet. Self-pity is not necessarily a negative thing, why shouldn’t you feel hard done by with all this sh*t you are going through? You have been in the eye of a hurricane and some breathing space and reflective time will allow you to process your emotions which is ultimately healthier than bottling then up.
Just one thing though.... you strike me as very connected with people. Try to allow those close to you to comfort you. Your husband will also be hurting and that hug might be just what you both need. After all, misery loves company 🙄 Be kind to yourself xxx
I’m sorry to read this! What a shit time you’re having! I promise you there is light at the end of the tunnel. I know a lot of ladies are on a vegan diet, my special person has been there and tried it all maybe have some beef a couple of days before your bloods are done as she finds this useful to get from a to b and usually her bloods are where they need to be ready for chemo when she is on it. I don’t know all I know is have what you fancy some chocolate cake and a cheeky glass of wine just to lift yourself back up? Works for me when I’m down xxx
Sorry that you are feeling so low at the moment. I know how it feels when bloods are low and you need to wait to continue.You should however be proud of yourself that you have managed to have so many sessions already.You have been so brave and you will pick yourself up again.Positive vibes are coming to you from us all.Take care.
Oh Kryssy, so sorry to hear you are feeling so low. Try get hold of pawpaw (papya) and eat it fresh and drink tea from the leaves but in the meantime take good care of you and hope you start to feel brighter soon. Sending a big cheery cyber hug to bring you some warmth. Xx
Really sorry to hear you feel so low Kryssy, it's soul destroying when you get bad news week after week. I was told red meat helps boost your bloods, so I eat that when I can, even though it's not really my thing and so far I've been okay with my bloods. Sending you a big hug.
So sorry Kryssy. Know that feeling when you just feel no one, no thing can comfort you and you want to wallow. Wallow away, but for a short time. You with the best sense of humor ever--how funny (the right word?) we get upset when they say "no chemo"!! When they told me that for the first time, I think I screamed "NOOOOOO!!!!" and the friend I was with almost fell off her chair not understanding why I reacted that way to what she thought was news I might appreciate. They have your best interest at heart, they know it would be bad to do and platelets from what I have read, DO bounce back fairly well with no treatment for "awhile". I DO know (in the states) they will give a platelet transfusion if bad enough. Maybe you can inquire. Under count of 50, they won't do chemo, that is strict I do know. Seems you are pretty close to coming above that to get your next treatment. Thoughts, hugs, and hiding under cover with you is what I am virtually doing!!!! oxox Judy
Hi Kryssy. It’s almost a day since your post so I do hope you’re starting to feel better. Chemo is hard enough to manage physically and emotionally without all the extra s**t. I know! As others have said, if you can let your lovely hubby give you some hugs, it will help. Sending you love and 🌻🌺🌹🌼🌸🌻🌺🌼🌸🌻🌺🌹🌼🌸🌻🌺🌹🌼🌸
WOW, WOW AND WOW AGAIN! First and foremost a massive THANK YOU to you all. I learned a lesson this morning when I read your posts. The love of strangers is worth a million universes and more than the hatred of pond dwellers. It will never make it into the top list of quotes but it is so from my heart that thank you isn't enough to say how I feel. As one or two of you said, I'm usually the clown here and that's me all over. I always see the funny side of everything - well, almost everything - but only when it's directed at me. I don't think it's funny when other people suffer or hurt themselves though. Can't stand You've Been Framed. Hubby yelps with laughter at people getting hurt. How does that work?
Anyway, my night and day revealed. It's going to be a bit long so that'll give those of you that know my posts a clue on how I'm feeling today. I keep quiet when I'm really sad.
After I posted, I went upstairs for a big sulk telling hubby (poor little sausage) to sleep in the spare room as I wanted to be alone. I was having a Greta Garbo hissy fit. (you young ones will have to google that). I disappeared under the duvet with a box of tissues. The phone rang and it was our number 2 son, a.k.a. Captain Sensible. He said, "Mum, are you ok? I've just had the strangest feeling that you are upset". Understatement of the century. An hour later, after he helped me think of something for our number 4's birthday in January and ordered it for me because I was convinced I wouldn't be here in January, he was just about to go and I said I was feeling so much better for his call when he announced.... "I'm off to Germany on Thursday. We are going to a Christmas Market". Now, this is the boy (aged 41, going on 16) that missed the New York killings by two weeks a while back, was in New York for a week and returned two weeks ago missing this latest bombing. So, like any mum, but especially Polly Paranoid here, I shall be worried until he gets home safely again.
Then, the phone rings again, just as I was settling down under the duvet again, and it was a friend who said, "Hi Chick (he always calls me that) are you ok? I sort of sense that something could be wrong". So, now I'm tele-pathetic am I? I used to call him, Big Red Cock but my hubby said that wasn't polite so now I call him Big Red Rooster. I don't seem the harm in Big Red Cock at all .... So, after another hour of offloading I was ready for a sleep. But sleep was my enemy.
About 2am I'm still awake and now feeling really lonely in this big empty bed so I go downstairs and open up a bottle of wine and eat a whole bar of chocolate. Then I get the munchies and rummage in the fridge and find a half tub of Tabbouleh. I'm not allowed it because it has gluten in but the wine said, what the heck, have it!! I don't remember getting back to bed but that's where I woke up this morning with gripping pains and a tummy as big as a beach ball. I certainly didn't need my prune juice this morning. Ouch!
So, feeling lousy, I decided to stay in bed all day and stink. Wouldn't even brush my teeth - what a rebel. Then I read my emails and all your messages. I cried. Not with sadness but you made me cry because I realised I wasn't alone any more - I had love coming at me from every direction and a whole lot of advice too. So, up I got and got ready for the out, telling my poor sausage that I was sorry but can I have your wallet please? I hit the big city and trawled around looking for Papaya leaf tea. Went to the orgasmic shop and they had it but it was with green tea and I think that's a no-no with chemo. But they did have dried papayas, which looked like little orange road kills. Bought some and I also got some Vit B12 and Magnesium with other B's in as the lady in
the orgasmic shop asked why I wanted the papaya tea so I told her and
she said I would need the B vits too.
Then headed for the big hypermarket, which is the size of a small town inside. After walking up and down, up and down and then down and up on my knees, I came away with some cubes of papaya covered in sugar. They had fresh papayas the size of marbles. I thought, they look nothing like the road kill and left them.
Hang on in there - nearly finished. I have returned home semi triumphant but have strained something down below lifting heavy shopping bags into the car. Should have stopped after the sugary papaya. So then I reread all your lovely comments and shock of shocks, I should have got Paw Paw, but thank you, Lorraine. You saved me from hanging myself.
A big ask now. Would someone lovely please either point me in the right direction as to where to buy some papaya leaf tea online in UK as it seems as if you can all get it easily OR buy some for me and send it over? I would pay for it of course and the postage. I can put sterling straight into your bank via payments. No need to divulge anything other than what is already on your cheque which you freely give to strangers i.e. sort code, account number and name on cheque. I do it all the time when people go back to UK for shopping and buy stuff for us. I don't have any sterling cash though.
So that's it in a nutshell - well, a flipping big nut actually. Love you all Kryssy xxxxx
Here’s the link where I’ve ordered mine. If you like, you can let me know your address and I’ll post One box to you as soon as mine arrives (I ordered three to save delivery). That will save you waiting while they process your order. I don’t know If its any good as I’ve been eating the fruit which is at least as big as a Bramley Apple.
I know my delivery has been despatched .
On train, on the way home now.
All the best! You should have taken your chaffeur shopping.!
Had a look at the link Helen. Thank you. It's far cheaper than on Amazon France. Same thing there is 17,69€ a box (!) plus delivery (the equivalent in sterling is about £15.50 for one box). You keep your box as I think I may have enough road kills and sugary lumps to last until next week at least and my blood test is on Monday. I'll buy some cheaper elsewhere - your discount looks good with free delivery too - and get them sent to one of the boys and they can forward them on to me. There probably won't be much time difference and at least you won't have to share your supply with me. How does that sound?
If it comes tomorrow, I'll let you know and then you can decide. I ordered three packets so it isn't as if you'd be depriving me, I'll have two more boxes (and something else which I think was one of the green teas ) to get the free delivery. When delivery is free it's not always speedy.
I could take the bags out of the box, put them into a freezer bag and cut all the salient points off the box and then post speediest method poss. Tea bags don't weigh much.
I think the paw paws must be working. WBC gone up this week from 6.86 to 7.40 today. Platelets 387 though were 4.86 last week and nuts 3.46 up from 2.5, what they do, and exactly what are the best numbers (I have a vague feeling you can have too many too).
I wonder why it's hard to get paw-paw fruit. I saw some in Calais, I think, or it might have been Brighton, huge ones.
You do make me laugh, Helen. I don't know whether I should be pleased for you or sad for you with your nuts up.... Haven't the faintest idea what that is. My whites are 3.86 now. The min/max range is 4 to 10 so I'm only just under. My V.G.M. and T.C.M.H. creep up weekly and are now both over the max but don't know what they mean. Something on the red list. The good news is that the potassium, which I starved myself for a week to get down and it didn't shift, is now down to just 0.1 point above the max and my magnesium is only one point down from the minimum. And, most interestingly, the C-reactive Protein which went over triple the max has come right down again to normal from just getting back to drinking my ginger tea every day. So I'll carry on with that one. Ferritine still up but they have said before at chemo clinique nowhere near what it would be for them to be worried. Some of these words will be a bit french to you but maybe in english they are very similar.
The Sri Lanka tea is in my eBay basket but I haven't bought yet. I'll decide on the morrow and let you know toute suite.
Can’t sleep so looked up these two. I think VGM, very likely stands for Mean Cell Volume, which measures the size of the red blood cells, either too big or too small and is looking for anaemia. TCMH is again looking for anaemia and is a measure of the haemoglobin in a red corpuscle. How this differs from the haemoglobin measure I do not know.
Morning Helen. Hope you got some sleep in the end last night. I'll buy the tea from Sri Lanka and hubby said we'll go back to the big city next week when he hopes his back is better (Lazerus lives!!), have some lunch and trawl around the shops instead of the supermarkets. Hmmm, week before Christmas. Flipping madness. Still, I'll get fed, always a bonus. So thank you for your kind offer and enjoy your tea too. Let me know your readings and I'll do the same. After next week I can get an ordnance (request) from the GP. Stay well and big thanks again. Calais is about an 8 hour drive from me. Brighton even more.
I am filled with admiration for you extraordinary sense of humour in the face of adversity! What a remarkable site this is for supporting folk through this ‘altered lifestyle’ - I’m not using its proper name today because it makes it feel important and controlling and just now, I ain’t having that! It can just bugger off!
I've woken up my usual cheery self this morning after sleeping 10 whole hours with no pee breaks. Haven't done that since July. I usually get about 5 if I'm lucky.
I renamed the monster Fluff Balls and now Fluffy Balls as the other word scares people and they can't say it out loud. Works well. I have just joined your bugger off gang...
I'll stay strong- don't like the word, "try" as it gives me the option to fail and not feel guilty. You stay strong too. Kryssy xxx
Hello Kryssy, I'm a bit late reading all this and feel for you. I have been sent home a couple of times and was so disappointed. I am drinking papya leaf tea. You can buy it on Amazon here, I would be surprised if they don't send it abroad. Hope you have hugged your man by now and feeling a bit more cheerful.
Thank you Katie. Yeah, hubby and I are cool. He's just making dinner as my noonie hurts when I walk from lifting the shopping by myself. Well, that's my excuse... xxxx
Right then. I've had a good look on Amazon France - way too expensive over here - and at the Buddha Teas which are really good value if you buy a lot and have found some dried leaves, no bags, 50g for £5.88 delivered from Sri Lanka to me for free. I actually prefer not to have the bags if I have the choice. It will arrive after 1st Jan but that's ok as my last chemo is next week so if the fruit doesn't work this week then I can still continue with it until the leaves arrive. Nothing ventured and all that. I have decided to grind up the dried fruit to a powder and mix it in with my porridge or, if that doesn't work, make a smoothie with it and some pineapple and some frozen strawberries. The bromelain will be good for me anyway. Hubby has pineapple juice every day to keep his bit of gout away.
So, do you think that's a good plan? I hope so.
Thank you all. Such good advice as usual. xxxxx <-3
I really can't remember where I read it or was told about it. I love green tea and have it languishing in the cupboard doing nothing. It may have been the nurses as they are always giving out advice on food etc. Their mantra is always, no sugar, no sugar, no sugar. That's fine with me - except when I eat a whole bar of choccie in the middle of the night...
Glad you got home safely. I'll PM tomorrow if I can as absolutely done in now. Been on the go all day. Time for my head to hit the pillow with the t.v. crapola and knitting. I recorded the new 4 parter Bancroft last night as I wasn't in the mood for t.v. Got to look at that first. Don't usually do t.v. watching, especially murders but I like Sarah Parish as an actress, so I'll forgive her this time, unless there is lots of blood and then I'm behind the sofa or peering over the top of the duvet. What a woose!
Hi Kryssy, its okay to feel down after this. Low platelets will make you not like yourself at all. I hope the hospital will see sense and do a transfusion if possible. Very hard when you are almost finished. Thinking of you and sendingkind thoughts
Oh hell sweetheart. I,be been offline for a few days while I waited for yet another tablet, number three this year!. The guy in the computer repair shop asked me if I,d been falling asleep and dropping the damn things, moi?😇😯. I hope things are looking a little brighter by now, and what did you mean by you,d been thinking wouldn't,t be here in January? You can pack that line of thought in right now Missy, seriously though apart from being total Irish tosh, we all know the power of positive thought on healing, some of the ladies are doing this mindfulness thingy, I don't,t know much about it but have heard great reports of it helping. As it,s now at least three days since your post I,m hoping you have emerged from your bolthole and Hubby's had his hug! Know exactly where your coming from though Krissy, sometimes we all need to vanish under the covers, and I hate people touching me when i!,m upset, I wonder why we do?. Well, anyway, it,s tough as I have just sent you a massive cyber hug and gentle healing vibes😂I. Notice the reply above mentioned blood transfusion as a way of quickly upping the platelets and that was also my first thought, it seems so obvious, have you asked them pops? I also seem to remember that egg whites up white platelets but I,m going to check on that as soon as I post this. Still. Finding my way around this new tablet so am limited on what I can write, full stops, capital letters all appearing in the wrong places, so far this reply has vanished twice so third time lucky!. Kisses. And cuddles winging their way over the mer is that right? I wrote mere in a school essay once after my best friend had told me that was French for sea. Regard LA merd!!!!!!!!.😉😉😁
Thank you. At least you didn't write merde. Now that would have gotten you a detention. No one has mentioned a blood transfusion. Down to 60 last week but results a day late coming so won't know until tomorrow and I didn't ask when they phoned today. At what point is it blood time? I thought about 50. xxx
Dear Kryssy, I hope your blood Plaquettes are up for this next chemo, I was the same during my last time with tax/carbo and I had only 1 to go, after 3 weeks they decided not to give the last one. Ros x
Hello Kryssy, hope you are doing well with your paw-paw porridge. My papaya tea bags arrived yesterday and I'm afraid to say it's the most horrible taste imaginable. I hope you fare better with the real leaves from Sri Lanka.
Bhuddah teas are a US brand and the instructions are to use water at a temp of 75 - to 85 deg. My kettle heats water in deg C. After much stubbornness on my part, "I know how to do this, -32 x 5/9, better do it again in case it's x 9/5. Perhaps it's the wrong way round, maybe it's x 5/9 + 32. Umm, maybe check it on a calculator in case I've made mistakes. Fifteen mins later and no calculator I found, remember there's a calculator on the Mac. No mistakes..... but that answer seems too cold, what about that one? Admit defeat and punch it into the internet and get the answer almost at the speed of light. But it's barely 30 deg C. Perhaps the instructions are in centigrade after all. One cup of water so that wouldn't mean a mug, it would be too weak. Dig out a cup, pour in the sort of hottish water, wait a few minutes, breathe in deeply, neutrophils here I come, cough begone........ It's horrible.
Sorry I've been quiet. Having traumas with a group I belong to. Hopefully all over today or tomorrow. Too boring to share with you though, unless you wanted a potted history...
Chemo cancelled again today. They were sneaky and didn't phone last night but waited until late this morning when I was all set to go. The swines. Luckily they have agreed I can have another one next Wednesday if my platelets pick up. Last week they said today would be the final one. Now I've a cold coming - or woman flu. Woman flu isn't so bad as it only lasts about 10 minutes, unlike man flu which lasts at least 3 weeks... Just dosing up with Vit C and hoping for the best. Can't get in the festive mood. If carol singers come a-calling they will get their holly and ivy where the sun doesn't shine today. (That's it girl. Get all the anger out).
Apart from all that nonsense,I wish all you wonderful girls and boys the most spectacular and surprising Christmas of all time. Lots of presents including the surprises you didn't really want and must look appreciative etc. etc. Lots to eat and drink and be merry with and lots of love and hugs from those you care about the most. I hope no-one is on their own or has just suffered a loss of a loved one. It's just a day but it's the most loneliness day of the year for some. Tell someone special that you love them. Tell someone that's not so special that you care about them. Laugh until you almost pee yourself. These are my rules for you all.
My rule this year is that I shall don my best onesie, hubby will probably wear his jeans and T shirt, nothing new there then but I may get him to wear a tie for dinner, and I'm hoping he'll do his little dance for me on Christmas morning wearing something special I bought him many years ago. It's very rude (as it would be with me) and all I can give you is think of a bank robber wearing a fish net stocking and you may get it. Sorry girls, probably a bit too much info., especially for the squeamish. We shall eat what we like, drink what we like, watch the rubbish on the box or play games. It will be the first Christmas with just the two of us for many years and it will be heaven. Hubby has threatened to get out the old home movies. Jeez. Not those again!
I love you all and thank you for being so supportive, caring and kind.
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