AM I THE ONLY CARER WHO NEVER SLEEPS!!!!!

hi rooster

was thinking about you yesterday, hope your ok today.

wheres me bottomless knickers, mind you cant use them as tents now, would be a bit cold........................i said it would be bloody cold ......lol

love karen xxx

dear mama hen mel

so hope your feeling bit better hunni, have been thinking about you, and how did it all go yesterday??

is it tomorrow that darryl has his onco appt, will be thinking about you all, please let me know how everything goes babe.

sending tons and tons of love and hugs, your chickie karen xxxxxxxxx

Hi My Dear Chickie Karen,

How nice to hear from you, but first i must apologise for not being on here for a few days as loads been happening here!!

I hope you the boys and Will are all well, and that you are all having a good day today?

Well what a week it has been so far! I had a real scare on monday and had to take Darryl to hospital!!! It was really worrying but he's ok and no worries so feel better about that and so does he bless him. What happened was he's been really constipated bless him and started bleeding loads, so i rushed him to hospital thinking the worst like you do, and thankfully he had just ruptured a vein with all the straining!!! He has movecol now and that seems to have helped loads(as lots of other people have said on other threads) and he seems much better, still not back to normal but getting there. I tell you i nearly ended up crying it was so scarey and the awful thing with this disease is that you always think the worst when things go wrong don't you? Anyway i have been looking after him and all bleeding stopped on the same day it started so thats good.

I had my blood test and ECG yesterday and have to go back next week on tuesday the 15th april for the results, but i'm sure nothing to worry about and nothing serious! well thats my opinion anyway! lol

Darryl sees his new onco Dr Taylor tomorrow at 2pm about starting radiotherapy so will let you know how he gets on with that ok? We both have counselling at 1pm first at the same onco unit so another busy afternoon! lol

My baby Kirsty went to Yorkshire yesterday, I dropped her at the coach station and saw her off before my drs appointment. When the coach went i cried driving home it was so sad, and i miss her so much, i wish she was back home already and not in 3 weeks time!! She comes back home on the 27th april for two weeks, with Dan her boyfriend then moving up there with him permanently on the 18th may.I know you have to let your kids go one day but i don't want her to go!!! We are both so close and i missed our chat we usually have in the morning on our own before anyone else gets up and shes only been gone a day!! lol I'm a silly moo aint i????????

Well as for footy glad Liverpool won yesterday good for them!!!

Chelsea did well too good old Lampard can rely on him for anything he's the man! lol Shame Essien not playing in the quarter finals silly boy, just like Essie doodles that one! lol But he'll be there for the final cos i know we will too!!
I quite like the idea of a choccy covered Lampard mind Rio Ferdanand and him are best mates so perhaps we could have both just to make it a bit fair like!!!! lol

I hope all is well and that you get to go on the course again tomorrow so good luck with that and do keep us up to date how you get on won't you? You take care babe and hope to hear from you very soon love and hugs mother hen mel xxx

My dear Teresa,

Well what a lot has been happening with our baby Michaela! Bless her heart i hope her treatments start soon for you both, as the sooner the're started the sooner the're over with eh, and hopefully she can get on with the rest of her life bless her.
I hope you will be able to stay with her as i know that would help you both, but would be even better if all goes well and she can have the treatments at home with the help of a mac nurse so keeping everything crossed for you both. You always feel better at home don't you?
You have both been through so much recently but this will just make you both even stronger people babe even though it probably don't feel like it at the moment. Life is sent to try us, to try our strenghts and weaknesses, but with all us here supporting you, and your family too, you will both come out of this safe and well i know that for sure!! Just a mother hen mellymoo premonition!!! Trust me i know these things!

Not sure if you read what i wrote above to chickie Karen? But hope you have so i don't have to type out all whats been happening here again! lol I'll be fingerless soon otherwise and be typing with my elbows, which could cause a few problems, as i'm sure you can imagine!! lol

I am here babe i promise that forever and ever, and even though sometimes i'm not online when dealing with things at home, i want you to know i'm always thinking of you and you are always in my heart babes! That goes for Michaela and all my little chickies too!!

Please do keep me up to date when you can as to how you are and how Michaela gets on won't you? And we all understand if you have to have some time offline to be with your baby so don't worry about that, just remember that we'll all still be here rooting for you both and looking forward to when you can update us as to how things go ok?
The chemo may take Michaela's hair but as i said to Darryl it can't take away his strenght, courage or charecter so whats a few hairs among friends and family eh? After all it is just hair and only there in the first place to help keep us warm, so you can buy her lots of swanky hats and she can be an individual in her own right!! may cost you a fortune but be worth it eh? I hope that didn't sound cruel, as i know it may have come accross as a bit callous( flipping computers!!) as i also know that women can be more devastated about hair loss then men, but what i meant was, even if Michaela does loose her hair you tell her to hold her head up high and never be embarressed about that cos it goes to show what she's going through and how much of a fighter and how brave she is!!! And no one can take that away from her!

Well babe i hope to hear from you soon remember i'm here whenever you need me love and hugs mother hen mel xxxx


My dear Kate,

I'm so sorry you have been having a tough time with our duracell bunny, but hope she is a little better today? How are you doing, and coping? I admire you so much my little chickie as you always plod on no matter how bad things are with a smile on your face and love and care about other people in your heart! You really are an inspiration to me and i'm sure many other people on here too!! You deserve 2 gold stars today for doing so well, in not only looking after our duracell bunny so well but also your dad! Thats official from mother hen so there you go! Accept them with my full compliments and love xxxxxx

I hope you read what i said to Karen above, as i said to Teresa can't type the same thing too many times or my fingers will wear out and i'll be down to my elbows by xmas! lol Bit of a prob typing then me thinks!

As for the footy, well i personally am glad Liverpool won and good for them too!! Arsenal usually get it there way bit like Man Utd so makes a change for Liverpool to have some decisions for them for a change! lol (sorry Karen and Teresa, but you know it's true lol)

Chelsea did well too but shame Essien misses next match silly boy just like my essie doodles he is! lol But he'll be in the final thats for sure cos Chelsea will be there definately!! lol

Well all these choccy covered sportstars and popstars i don't know what the world coming to! lol Me thinks you all need taking in hand and wheres Mick when you need him????? Joining in i bet? lol Mind i wouldn't mind Lampard in choccy but just him in the flesh would be ok for me! Mind think Darryl may have something to say about that, and knowing my luck if Lampard did come round he'd be so busy talking footy to Darryl and Daley i wouldn't get a look in!! lol Poor mother hen melly moo!!!!!!

Well babes i hope you are having a better day today and you take care cos i care love to your dad and the duracell bunny love and hugs mother hen mel xxxx


My dear Rooster Mick,

Hope alls well with you today, and why haven't you been keeping these girlies in order? lol

I did warn you they can get a bit overexcited and out of hand sometimes, bet you wonder what you let yourself in for now!!! lol

I hope you have read what i've written above to the chickies, so saves me typing it all again?? Plus gets a bit boring for people to be reading the same thing over and over again, and my poor fingers will be worn away by xmas otherwise!

I hope you and your lab are having a good day today and hope to hear from you soon.

You take care my friend love and hugs mother hen mel xxxxx



My dear little chick moomy,

How are you today, and how is Caz doing? Is it this week she has her scan etc? If it is i hope all goes well for her and do let me know how she gets on won't you?

I hope you don't mind but i also say to you that i hope you have read what i have said to Karen above about how things have been this week so i don't keep repeating myself? Which is exactally what i am doing now! lol

I hope the audition goes well for Caz and do let me know how shes gets on with that too won't you?

These girlies have been getting a bit overexcited on here don't you think? lol

Maybe a little slap with a wet lettuce leaf is in order to keep them under control? I don't know, i'm away for a couple of days and they get all out of hand, i think i will have to try to control them better in the future!! lol

Well my little chickie i hope you are having a nice day today and that alls well your end? you take care and hope to hear from you very soon love and hugs mother hen mel xxxx


My dear little chickie Juls,

Hope that you're ok and that allls well for you today too?

As i keep repeating to everyone if you read what i have said to Karen above you will know whats being going on here in the last couple of days!

I say that so i don't have to retype the same thing to everyone and that seems to be what i'm doing! lol

I'm thinking of getting some thimbles for my fingers, so they don't get worn out with all the typing so quickly!!!!

How is Donna? Has she read the thread you started for her? I do so hope she is feeling better and that she hasn't let her sisters words effect her too much, as she sounds like a waste of space( the sister not Donna of course!)

Anyway babes i hope you are having a nice day today whatever you are doing. Hope to hear from you soon love and hugs mother hen mel xxxxx


My dear Chickie Kim,

Welcome to my thread, it's so nice to hear from you just a shame as to the circumstances!

You're very welcome to be one of my little chickies anytime and we all look after each other on here so please feel free to be able to say what you like when you like ok?

How are you today? I hope you are ok and that alls going well for you.

As iv'e said to the other chickies if you read above what iv'e said to Karen you will know whats been happening here in the last few days. I hope that doesn't sound too impersorsonal to you being a new little chickie of mine but it saves me keep typing the same thing which is exactually what i'm doing now! Which is quite funny really lol. Its just people get bored of reading the same thing over again so thought that would help you all not to get so bored if you know what i mean?

That all sounded double dutch really but thats mother hen for you!! lol

I do hope you're having a nice day today and hope to hear from you very soon. You take care babes and remember you are never alone now as we all walk alongside you forever!

Love and hugs mother hen mel xxxxx



To anyone else i may have missed, and for this i am deeply sorry i hope you are all ok and that alls well with you all?

I'm here if any of you need support or a chat and hope i can be of help to you all in some way even if it is just to listen.

You all have a nice day and again sorry for being so impersonal about this message to you, so hope you forgive me.

lots of love and hugs mother hen mel xxxxx

Dearest Mother Hen Melly moo
I am gald to see you posting again as this means you feel well enough to watch over us again.

Yes Donna has read the thread and all of the beautiful messages that have been posted on there for her, these have given her proof of the genuine love for her here on this forum! She also gave me just a miniscule payback but that was banter and friendship! No issues there.

Last night was a little fraught as our grandson (he lives with us) developed a raging temperature and was fretting he couldn't breath properly so immediate action was needed. He has a history of febrile convulsions and asthma which are both triggered by viruses. Although all of the problems were easily sorted, for him they are scary and emotional. Today as is the way with children he is bouncing again! No sign of anything at all.

Richard is well and about to start his last round of chemo tomorrow, ...............................................!!

Once again I am happy to see you back here>

Juls

Hi Juls My little chickie,

So nice to hear from you again, but sorry to hear your grandson was poorly last night. My daughter Kirsty when she was a baby used to have night terrors and convulsions if she had a high temp, so know how you feel it can be scarey can't it? I'm glad your little grandson is feeling better today, it's surprising how resilliant little ones can be isn't it? I hope he continues to do well.

I'm so pleased Donna is feeling better too and that all the messages left for her helped her to feel that she's not alone and never will be on here! Some people can just be so cruel but when it comes from your own family i think that hurts more, so imagine how she must have felt poor thing. I have 3 sisters myself but only see one occaisionally as the other 2 have been nasty to me over the years, but thats another story and too depressing to discuss on here, as we want to be happy people don't we!! lol

I wish Richard good luck with his last round of chemo tom and hope all goes well, so please let me know how he goes won't you?

It's weird cos when Darryl had his last round of chemo we felt really relieved that it was all over and on a high that another battle had been won. But you don't really get any congratulations from other people or the hospital that it's all finished, you just go home and thats it! I don't mean that we expected banners to be out at the hospital but you would think that they would awknowledge what you had been through and, i don't know say well done or something. Do you know what i mean? Maybe you will tomorrow when Richard has had his last one if you don't today. It's just a weird kind of feeling.

We did say we was going to have a little get together after Darryl had finished his chemo and was feeling better, but then i haven't felt 100% either and we see the new onco tomorrow Dr Taylor to find out when radio starts so think we have put the get together off till after radio now! We will get there in the end though! lol

Please do let me know how Richard gets on tomorrow and how you feel too. I'm here anytime you need a chat babe, after all you're under my wing now my little chickie!!

You take care and once again good luck for tom love and hugs mother hen mel xxxxx

Dear Mother Hen Mellymoo
You have captured exactly our thinking. How very perceptive of you, but then yoou too are on this journey and so know all of the helterskelter emotions.

I am just so relieved we have got this far and without any major problems or hospitalisations. Gratefull that for him and us the dreadful side effects and chemo moods will so be a thing of the past. We now only have another two weeks ahead so count down has commensed.

I feel however, we are not yet out of the woods as his CEA levels have risen over three consecutive test and so a scan was ordered, which he has had but no follow up appointment given. I would press but he doesn't want to bother, 'it will be alright, if not they will contact me' attitude, we are in limbo and I don't speak Limbo'am. I am mindful that the inital diagnosis was a T4, so no small issue.

He has been given a 'final' appointment at the end of May / early June, but I feel that is just too far into the future, as there are still too many unanswered questions.

I am also at a loss as to how we move forwards from this journey. As you rightly say there is an expectation of banners, fireworks, pzzazz, but it almost feels like falling off the end of a conveyor belt!

I would like to mark the end of this phase in our lives, but feel i will be tempting fate! AND will have Mick after me as this is one area we agree on!

I feel it is almost like the hours directly after the party has finished! Just how strange is that I should be shouting out, but still only feel a whisper emerge!

Juls

Dear Mother Hen Mel,

I am so glad to hear that you are being well looked after, and having tests to make sure you will soon be fighting fit, especially to cope with us naughty chickies!

Caz had her scan yesterday and we get to see the Prof on 21st, I will go for that appointment with her, we will see....

She has just got home from her rehearsal just now, and has the concert tomorrow, that's in London, and then on Friday she has the audition....

I have a wee confession, managed to sprain my left foot/ankle, not even sure how, but it has been plaguing me for a couple of weeks so at long last I went to the 'hobble in' centre at our local Hosp, and got checked out in case it was any worse....I'm supposed to rest it elevated some of the time (hahaha, how??????)

Caz has managed to get me some information about joining the Halle choir for a special event in July, with a recording for the Halle's own label, I have to audition too! Rehearsals will be 2 a month IF I get accepted! at least I can avail myself of Caz's B&B, and get my own back!



Teresa, I do hope you know soon what treatment Michaela will be having, and for how long, please keep me posted if you can.....



Juls, so glad Richard is nearing the end of his marathon treatment and so hope the news will be good for him, speak to you soon.....



Mama Hen Mel, your suggestion of the wet lettuce leaf might not be a bad idea!...........

love and hugs to all...........

My Dear Juls,

It's good to hear that other people have felt like we have about the end of chemo. I mean that in a nice way too, not in the way it sounds! lol

We had a very bumpy ride with Darryl on chemo the first course he had he ended up in hospital with neutropenia(no white cells) and had to have iv anti biotics and an injections of filgrastim to encourage his bone marrow to make white cells. He was in there for 5 days and was very poorly for the first few days but did pick up again. The 2nd course was reduced by 25% as the onco said that Darryl may have had a bit too much, and never ended up in hospital so we thought we'd cracked it. However, after his 3rd and 4th course of chemo he ended up in hospital again with neutropenia, and was in for another 5 days on each occasion. When Darryl had his 5th and 6th round of chemo i was asked to give him injections of filgrastim to prevent his white count dropping so low, which along with the anti biotics seemed to keep him out of hospital and quite well. Not sure why they didn't do that after the second admission but thats done now.

When we last saw Darryl's first onco Dr Shah in March he said that Darryl tumour in his lung had gone down by 90% and the mets on his spine had changed shape and looked like scar tissue now. We asked if that meant that Darryl's cancer was now not terminal but the onco said it was still terminal but Darryl had reacted much better than he thought he would especially as his tumour was so large to start with. Darryl has small cell lung cancer so it's not really staged just told it was extensive.

We now are seeing another onco tomorrow called Dr Taylor who specialises in radiotherapy and he is going to discuss with us what is going to happen and when it will start and how many courses Darryl will have to have. We have been told that he will be having radio on his chest and head as the type of cancer Darryl has is prone to spread to the brain so just a precautionary measure, which we thought was worth doing as it cuts the chance of his cancer spreading to his brain to 30%. Still a hard decision to make but we feel the right one for Darryl as he's only 44.

Forgive me for sounding so ignorant but what are CEA levels? i'm not sure what type of cancer Richard has so not up with all the terminology for other cancers apart from SCLC so please forgive my ignorance.
I know you say Richard isn't worried about a follow up appointment but would he mind you ringing the hospital just to ask if he's meant to have one? If he doesn't have a follow up you are both never going to know, but i can understand what he's saying as i'm like that alot(which Darryl's always telling me off for!) i always say if it's that bad the'll contact me, but i know how you feel too as it's worrying when you're in limbo so to speak. If it was me i'd just ring to ask anyway, but only you know what to do about that babe as i don't want to start a family argument! Perhaps you could say to Richard that would he mind you ringing just to check to at least put your mind at rest? Let me know what happens won't you and what you decide to do?

I'd like to wish you both good luck with Richards last appointment at the end of may/june, i really hope that all goes well. Will Richard be having radio as well do you know or not?

Babe i'm always here whenever you want to chat, i may not be able to resolve your problems and most times probably won't have the right answers, but i am here, and i do listen, and if i can help you in any way you just shout ok sweetie, cos you're not alone and never will be all the time i am on this earth. You have done so well to get Richard so far in his journey, and i bet he's proud of you every flipping day, because without you by his side, who knows, he may not have progressed so well. So you give yourself some credit too babe cos you both made this journey and will continue to do so, and you will be there all the way like i am for Darryl and have been for the last 7 months(Has Darryl had cancer for 7 months already thats gone so quick!).

You take care babe and don't forget i'm here love and hugs mother hen mel xxxx

My dear little chick moomy,

Funny how our names are so similar, me being mellymoo and you being moomy! lol

I'm glad Caz has had her CT scan and wish her the best of luck for the 21st when she see's the prof, please do let me know how she gets on won't you? I will have everything crossed that alls well.

Poor you spraining your ankle! don't forget the magic words will you! R.I.C.E!!! lol thats rest, ice, compression, and elevation, but can undestand how difficult that can be but you do your best or we'll all be falling apart on here and it will end up being the sickie thread instead of am i the only carer who never sleeps! lol Seriously i do hope that it gets better soon and that you are soon running about again. No chance of you doing the London marathon on Sunday then??????? lol

Good luck to Caz at the concert in London tomorrow hope that goes well and with her audition on Friday. I will be thinking of her and keep everything crossed that all goes well. Best best wishes and luck with that for her!

Caz sounds very talented what with her musical talent and the Halle choir too, and you may be joining too thats really good so good luck with that too! You never know we may see you both on T.V soon! It will be nice for you to go to Caz's for a little while in July too and hopefully the weather will be nice then too, at least then she can pamper you a bit! lol

Anyway i hope you have a nice evening and you keep resting that ankle when you can hobbler!! lol

love and hugs mother hen mel xxxxx

Hi All

Just thought I would stop by and add a few words about us. My husband was diagnosed with bowel cancer last August. Perhaps a short wind back might be helpful, we moved house some five years ago as I had been caring for my mother for some four years at that point but from some distance away and it had become blatantly obvious the situation would not improve so both houses were sold and a joint purchaes made so I could care for my mother on site

Anyway three years ago whilst on holiday Richard experienced for the first time excrutiating stomach pains which were check and a probable cause of trapped wind / constipation put down as potential cause, with the advice of see your GP if it happens again. No further incidents occurred.

Mum then sadly died, llast year eaving our annex vacant, Richard suggested we moved as I was finding life very hard to cope with, but I insisted we wait a while before moving to ensure we were moving for the 'right reasons'. Min L then cottoned on and did the 'helpless deserted mother' act to my darling soft hearted hubby. So within six months all traces of my mother now gone and M in L happily in residence and doing her best to make her mark in all aspects.

Shortly after her move in Richard needed some dental treatment resulting in antibiotics, to which he developed a reaction to (so we and all medics thought). These consisted of violent stomach cramps, but absolutely no other symptoms. Anyway after much nagging from me (only over 2 days as pain severe enough for him to notice), he visited the GP who initiated tests for bladder infections / Kidney stones. All of the results however came back negative, at this point the pains had moved up a gear and within four days his bowel ceased to function, his appetite disappeared completely, this initiated many calls to NHS direct as well as GP. The responses were, "take a senecot and paracetamol you'll be fine, wait for next round of tests for stones". (we are talking about only three weeks as private med insurance speeded up tests).

Then he started vomiting fecal matter (bless him, embarrassment prevented him telling me this for 2 days). When I found out what was happening we immediately went to A and E where the duty Dr. requested morphine given to absolute maximum dosage, just so they could examin him. A CT scan ordered and the verbal suggestion of ominous mass given, emergency operation just hours later once colorectal team were prepared and our life altered forever by the op findings of a tumor that had totally blocked his bowel with signs of bowel perforation.
The pathology result arrived with the 'colon cancer Dukes B stage 2 T4 with cancer cells found in blood supply', given and now we are part way through Capecitebine chemo.

The macmillan nurse assured us he would be able to work throughout, no such luck as most of the side effects have taken firm hold resulting in his inability to function on most days. Respite from the awful side effects becoming less during each 6 days off time.

I have copied my initial intro from 'Rectal cancer - how big is yours' thread for you to read. The CEA Is a protein that is used as a tumor marker for bowel cancer. Some people do not have any fluctuation whatsoever in this marker and others have erratic CEA counts. So logic tells me this test is none too reliable and therefore shouldn't be given too much credibility, however, as I am sure you will recognise that despite words of reassurance I want PROOF. AND I don't want to wait until June thank you very much.

So that just about sums us up. I do apologise for the long ramble and witterings, especially as others have far harder journeys ahead. For this I am truly sorry for them, but I can only live the life we have been given.

juls