General Chat

time for bed good night x

Thank you pusser cat and florence, yes i think it would be good to talk about it but dont like to bother ppl to much. I have just had my latest scan results and so far so good. I was so relieved I could have cried. which I havent done throughout the cancers, surgeries etc. I thought this time they were going to tell me the worst. Waiting to see a geneticist to see if I have gardner syndrome, anyone heard of it. Hopefully I wont have it as worried for my 4 children (grown up ) thanks for listening ...sylvia

hi sylvia, just to let you know if you are feeling a bit low come on and tell us the problem, im sure with our pool of experience and knowledge we can help you out.
sometimes just talking about your experience to someone else does really help, especially to some of us as we all understand what youve been through.

hope you are keeping well just now, stay positive. so glad you have family for support, makes a huge difference.
hugs and best wishes
florencex

thanks sylvia thankyou for sharing it with us always here if you want a natter xxxxx

I wish all you lovely people who have, or who are still fighting cancer. the very best. I always thought if I ever got cancer I would never cope. Wrong, had it 4 times and determined not to go anywhere for a long time . To busy lol Got lovely family to keep me going. l dont usually talk about it but after reading the posts on here made me realise even more what other people maybe going through. I always think there is always someone worse off than myself. love to you all x

Florence, i remember the school ringing me one day they asked if i had money problems , it turned out they had contacted social services because david would only eat dry bread this was a phase that could last months then it would be sausages , at home i had to put food on seperate plates it was a nightmare but worth every minute to have a 6ft loving son, who tells my youngest to be a good girl to me bless him xxx

evening peeps, have been busy all day, usual roast dinners and endless washing up!!
daff i know what you mean about high dose chemo. within 1 hour of being given this, my daughter was so sick worse than ever. you then are put into strict isolation as your platelets and neutrofils dissapear from the face of the earth for about 6 weeks, that was the worse treatment of all im sure you will agree.

as for long term effects, well she has high tone frequency deafnes and wears a hearing aid, but tht so far was all the damage done. her heart, lungs and kidneys are ok so we are thankful it was partial hearing and can cope with that.

pusser cat, i know what you mean about men. in the hospital 90% of mums were there 24/7. even my oh only stayed 1 or 2 nights and then would get the nurses to do everything, he said he coulnt cope. but we do and have to so i think that makes mums pretty special when we look after sick children and deservea pat on the back at least.

when my daughter teturned to school a year or so later i became a special needs auxillary, working one to one with a range of different children. i once had a teenage boy with aspergers syndrome strangly enough. some days he was very withdrawn and i had to watch what i said. he had some strange eating habits, food had to be a certain colour etc. he had panic attacks quite frequently and wouldnt travel on a bus. but we had a good rapoor and built a good trust between us. he has now gone to senior school and is with my older son. he seems to enjoy it and has now settled down which is good to hear.

i count my blessings everyday now, dont plan to far ahead and whatever life throws at me i deal with it because theres nothing left that i feel i couldnt handle now.

mac i didnt know you were ill, i hope you try to be positve and in time you will be clear. sending my positve thoughts for a good recovery.

daff and pusser cat let me know how you get on at the checks ups, will be thinking of you both.
florencex

our daffodil your amazing too xx

Florence I'm so happy for you you too are an amazing lady i know as parents we do and will go that extra million miles and care for our children when things go wrong and its scary , how men can walk away is beyond me as in my case with my son in comparison nothing like what you had to cope with Florence but it my case scary to me as i didn't understand what was happening to my beautiful son, he has aspergers, i look back now and think i did it on my own i could of run but we don't do we Florence to be in total control of your daughter to me must of been the scariest thing any mother could go thru your amazing and deserve every happiness your darling daughter will bring you even if she is one of them alien teenagers lol xxx

Morning Florence.... with AML, it is extremely aggressive... first cancer cell to death about 12 weeks, if it isn't caught and treated. I was just going into my second cycle (bloods are on a 3 weekly birth to death (of the cell, lol) cycle), which meant I was about 4 weeks into the cancerous phase... The thing with AML is to throw everything they can at you, to get you into an early remission... that is, hopefully after the first cycle of chemo, the first cycle is 26 high doses of the stuff over a 10 day period. I went into remission after that... but AML is so aggressive, that it needs at least 3 more intensive courses after that, as well, or it has a very very high chance of coming back. When they do the bone marrow biopsy after your first lot, you get the *all clear* if you have less than 5% blasts (cancerous cells) and the rest of the treatment is designed to knock the rest out, so that new cells can grow properly... I went into the *no discernible blasts* after the first course, an excellent place to be, and the *all clear* to a certain extent.

But the chemo is extremely toxic, so it does cause other problems, lol. It took 18 months for my bloods to be normal... and my platelets still aren't there yet, so I have to be careful with sharp things, lol. I was unable to have the 4th course, as I was too ill. So I have been in remission for 18 months... I now have about a 40% chance of it coming back... in November this year it will be just under 10% chance of recurring. At the 5 year point, it is looking really good for not coming back to bite me on the bum, lolol

A lot of the damage has slowly repaired, and the effects are now mild, but does cause a few probs... I got C Diff when I had the two big intravenous antibiotics for about the 5th lot of septicaemia... and organ failure as well (the nurses referred to them as domestos, cos they kill all known germs, lol except C Diff... the allow C Diff to take over, which is what happened to me)

These effects, they don't know how well I am going to recover from them... older patients don't have the resilience that younger patients do, in many ways. But as you know, there are long term effects that you won't know about until your daughter is a little bit older. Yes, she is certainly a little fighter!

Mac... I am sorry, I didn't realise you had had cancer. How long ago since your treatment? As I said to Puss, there are not many cancers they can say *you are cured* although they can say *all clear* because it looks like they got it all. I believe her stepdad's might be one of them.

Love

Daff xxxx

daff, so glad you got through it, i think like me you are afighter and dont give up easily! how many years have you been in remission now? the only good thing to come out from those that have either suffered themselves or like me a parent of a child is that we all understand the highs and lows of the disease and treatment and how it affects the whole family not just the patients and that we can offer hope, advice and understanding to others going through it.

someone once said to me, oh i know what you are going through, as when i broke my wrist the trauma of it all was too much too bear, and that is completely true!! i just said really, i dont think a broken wrist and cancer really compare do they?

when we came home after a year, my daughter had a milk feed for 20 hours a day and we had a drip machine in the bedroom. it looked just like the hospital room but in the night when the tubes were blocked, it was me that had to get up, there were no nurses for supprt. yes pusser cat i felt as if my safety net had gone and was on my own. it was quite scary for a while. i gave all the drugs myself through her feeding tube, they taught me at hospital how to do that. i had charts made to keep tabs of everything etc. but as time goes on, you do get back into a normality, not quite what you had before, but normal to your own family.

if anyone who had a cold wanted to visit they were politely told come back in 2 weeks, her immune system was still very low as you would expect.

but after a while you become a little more relaxed and dont fret quite as easily when she says ive got a sore tummy, thats how it all started.

as she approaches teenage life i have adifferent set of worries, but i never cross a bridge until i have to.
kepp smiling
remember we are all here for each other
big hugs to you both
daff and pusser cat

Florence, that is wonderful news.... she is one plucky young lady... you went through hell and back, I know... my family did, and I am adult! I had Acute Myeloid Leukaemia.

Love and (((((hugs)))))

Daff xxxxx

hi pusser cat, when my daughter finally finished her treatment of chemo, 9 months, 5 hr operation and 3 weeks of radiotheraphy and lastly 6 months of a special vitamin to strengthen her bones, i thought i would never here the word all clear but we did. however she was then after the first year classed as in remission, that is the cancer had gone away but could come back at anytime and moreso in the first 2 years. we regularly went to yorkhill in glasgow on monthly, 2,3 and 6 monthly visits. at 3 years we were put onto yearly visits, such a milestone. were told less likely to come back now but still had to be 5 years in remission before classed as cured. but in may 2009 that day finally came. from 51/2 to a girl of 11 1/2 it was a chapter in our lives i wouldnt wish on anyone, but we now have passed the magic 5 and she will be 13 this september such a miracle. the survival rate for the neuroblastoma stage 4 is only 30% but she is still here.

stay positve and live everyday to the limit, never look back because we change anything.

i send my positive thoughts to you and your family and hope all goes well
all the best florencei

Thanks daff you explain it so well, i will pass your message on, and my mum is grateful for the info you have provided for me to tell them, so thank you very much from the heart xxxxxx

No... no sprouts, lol.... I am playing scrabble with my hubby, lolol... what an exciting life! ;¬))

Love

Daff xxxx

When they say *all clear* they mean that there is no discernible cancer in the samples they have taken, and they are likely to have got it all.

But it also means different things in different circumstances... they usually don't say *you are healed* they say *all clear* meaning there is all liklihood that it has all gone, but a remote chance that it could return... or return in another place. Some cancers they can say that there is a very remote chance of it returning, and I think yourstepdad's might be one of those... they have caught it before it has spread any further.

After other treatment, they also use *in remission* which means that they have cracked it for now... similar, really. I am not all clear... but I am in remission. Mine had an extremely high chance of coming back... although it is much better now, lolol

But it is a good thing... so build on that, and keep very positive... his chances are extremely good, of it never coming back.

Love

Daff xxxx

Unfortunately, this is the cloud that will always hang over the head of someone who has fought and beaten cancer. A small chance it will return, but still there.

Your stepdad will now feel as though a weight has been lifted from his shoulders..... but, and it is a very big but... he has nothing to fight now, and he will feel very much alone, even though he has so many people behind him, it is still a lonely time..... and his life has altered very dramatically, so he will now be looking at that.... last week he felt he was fighting for his life, now he is looking at quality of life... tell him from me, I know exactly what he means, and it is absolutely normal!!

The longer he goes without it coming back... the better his chances, by the way... but he must still look out for any changes and go to the GP straight away, don't leave it. There are very very few cancers where they will tell you that you are cured, totally even after 5 years... I might be wrong, but I think your stepdad's might fall into that category... but he has needed massive surgery to get that.... huge emotional issues for him to be dealing with.

Thanks julia, yes hopefully she will be on tonight i think she is cooking some sprouts xx

Hi Pusser Babes, just getting ready to go out.
I would have thought that, but I think you really need the expertise or our Daffers to explain it fully
Lots of Love to you All
Julia in Derbyshire

what all clear actually means, does he have to go 5 yrs like others with different cancers, and when he reaches 5 yrs does it mean its less likely to come back