Support Thread for Anyone Affected by Cancer

[mummydoit]

I know there are a few of us with DHs or other relatives suffering from cancer. Anyone want to join me in a support thread?

I'll kick off with something positive as DH is doing really well at the moment. The radiotherapy he had over the summer has eased his symptoms so he's able to swallow well and eat almost normally. Still has to avoid certain foods and has to eat slowly but at least he can eat! One of the secondary tumours on his liver had grown slightly but not enough to need treatment. He'll have another scan in December and we're hoping for no change again. If and when he does need more chemo, there's a clinical trial we're hoping he can take part in. Only one in four people are suitable, though. He's had the blood test to see if he is suitable and we're waiting for the results of that.

Sadly, my Dad isn't doing so well. He's been in hospital on and off since June, first having his stomach feeding tube fitted, then he got an infection which turned into c. difficile. He was only home for ten days after that when he started coughing up blood and ended up back in hospital. Thankfully, he's back home again and doing okay though they had to stop his chemo when he got the infection and he's still too weak for them to start it again.

We're approaching Christmas with mixed feelings. Positive regarding DH. This time last year, he was very ill and hadn't been diagnosed. He could barely eat at all and Christmas was awful. This year he's so much better and we're looking forward to a much better Christmas. However, we're sad about Dad as it looks very likely that this will be his last Christmas with us. Plus he's unable to eat or drink at all now so what sort of Christmas will he have? Or my mum who feels guilty eating in front of him and definitely won't be making a Christmas dinner for herself or buying any Christmas goodies.

For anyone who hasn't read any of my threads before, DH and Dad both have cancer of the oesophagus. Dad was diagnosed five years ago, DH in February.

Love and kind thoughts for all as the new year approaches full of uncertainty.

I wish you all peace in whatever events unfold.

God bless you all.

XXX

hello all, i'm apprehensive about posting on here, because it makes it all seem a bit real, and i like to try and keep my feelings inside so it doesnt affect my life too much(i'm not explaining myself very well am i?) but anyway, here goes.

the day i gave birth to my dd in sept 07, my darling dad told me he had lung cancer but had kept it from me throughout my pg in case i got too stressed. he was admitted into hospital 3 days later to have his lung removed. The operation was a success, and he was told that it was all removed, along with a few lymph nodes for testing.... he heard nothing more un til 2 weeks ago when he phoned to find out what was going on - the hospital had forgotten him and he was supposed to have had chemotherapy because the cancer was found in one of the lymph nodes. that should have happened 6 weeks or so after operation, not 17 plus weeks.... so we are all very worried, as is he (although he doesnt like to show his feelings, like me i guess )

can anyone reassure me - i have today stupidly looked om the internet to find out that stage 2 lung cancer patients have only a 40-50% chance of surviving 5 years and i am, quite frankly devastated. Please can i have people's opinions/stories on anything similar.

many thanks.

Oh Kerri, that's just awful.

I don't have an experiance of lung cancer, but my DS1 was diagnosed with Neuroblastoma when he was 3 and was given a 10% chance of survival, he lived for another 2 years, defying all odds.

Other families I know with Neuroblastoma children were given the same statistics at similar ages and their kids are now teenagers, one I know of is now 26!

My point is, there are always statisics, but every person is different, for some one kind of treatment or chemo drug will work better than another, try not to think too much about stats, the best ways to fight cancer are with a strong heart and a strong mind. Fight from within. Thats how Jack lived those two extra precious years.

Keeping your feelings inside will affect you more than you think, don't ever be afraid to ramble, even if you don't think it makes much sense, anyone on this thread will understand, that's why mummydoit started this thread in the first place.

I wish you and your family love and hope.

Devestating news today, I heard of a one and a half year old boy in Nebraska beating Neuroblastoma, defying all odds, running around fighting fit, died on December 30th by a freak chance.

He had a Trach in his throat and it came out during his sleep and his mom found him in the morning.

Now what are the statisics for that?

Good grief how awful ... makes you think there's something to that "destiny" school of thought (which I don't generally subscribe to as feel it is defeatist ... but that's my own personal opinion and I know it brings comfort to others).

I totally agree with you lena about statistics, and kerri it is devastating to start researching the statistics for cancer survival and see it written in terms of 5 years. But that just seems to be the way they describe it. And in your dad's case, for every person that doesn't survive that long, there is another who survives much longer. And never lose sight that these are averages ... and there will be people who have lived much much much longer than 5 years. How awful they forgot about him though ... is he going to complain/take it further?

My dh has a brain tumour (intermediate-high grade - biopsy was inconclusive). We were originally given "months" but it has responded well to treatment and he's now tentatively in the 5-10 year category. Still appalling but better. And as your awful message shows lena about the boy in Nebraska ... you never know what's round the corner. What's that song out at the moment with the words something like "it's funny how you think you have your whole life planned just to find it was never ever in your hands" ... no idea who sings it (Sugababes maybe???) but it makes me cry a little every time I hear it.

Sorry for long msg ... don't post very often. Wishing everyone on here much love x

Wishingchair, not heard that song, if you remember who it's by or what it's called let me know...

lena, thank you for your thoughts. i read about your ds1 on another thread and it made me cry, i saw his webpage too, such a brave, beautiful little boy, and i can't begin to imagine how hard it was for you, not only to hear the diagnosis, but also to let him go. I'm sorry also to hear that your DD is not so well, do you have any news on her? you must be out of your mind with worry

thanks also wishing, dad is going to complain and take the matter further because it is just dreadful that he has been forgotten, i just hope no lasting damage has been done by their negligence...

the sad thing is that even though i see my parents almost every day, i cant bring myself to ask when he starts chemo...is it very insensitive to ask him about it or will he, like me, have it running in the background of his mind all the time, and therefore not be too affected by speaking about it? what i', trying to ask is, do people like to ignore the reality and not be reminded all the time? Also what is chemo like? he is having 4 doses over 3 months. I've only ever "seen" cancer in my aunty who lived a long way away and who sadly died 4 years ago (her husband remarried 2 years ago but his new wife has the same cancer and is unlikely to see this year out - how can life be so unfair?)

thanks for listening.

My dh has just finished chemo - there are all sorts of different types. He took his in tablet form 5 days in every 28 for 6 months. It got progressively harder for him as the months went on. They made him nauseous, sick a couple of times, really really tired, almost flu-ey. As the months went on it took longer for him to bounce back ... the cumulative effect I guess.

In my experience, I prefer it if people talk to me about it like it is an every day thing. Not have it as an unspoken monster looming in the background. It is/will become an every day thing for him so just talk to him like that.

Re: detrimental effect due to lack of chemo. Not sure if you'll ever know but I would say that lots of cancers are there lurking around in your body for a long time before they're even diagnosed so I've everything crossed this is slow growing and he's not any worse off as a result.

Really really sad about your uncle. Life can be unfair but for most of us, the 'fair' bits massively outweigh the unfair bits. It's just we don't question the good bits ... the thing I've learnt through all this is to appreciate the good bits ... even if it's just a normal day of school run, washing up and cooking ... this is our life after all so I should enjoy it .

you're right wishingchair, i'm normally a very positive person, but i think everything is getting a bit on top of me this week, with a young baby who has allergies and won't feed well, hv irritating the hell out of me cos my baby won't drink enough milk but not letting me wean her, cat in hospital with undiagnosed illness - very upsetting and incredibly expensive, and then this...i guess i do just need a good old cry (or a bottle glass of wine )

so, my life is good, my baby is healthy, my dh is wonderful, and my mum is (mostly) fab! i am going to embrace the cancer as a transitional part of my dads life, talk about it, accept it will be around for a while but expect it to LEAVE our family alone in a few months!

Perfect attitude. When I was in depths of despair about dh he was just like "what's wrong? this isn't going to be the thing that gets me so don't worry". So we try to be positive and just get on with it. It'll be hard now that the chemos stopped ... we're not doing anything to it any more. Will it just grow back? Hoping if there is any left (think maybe a tiny bit) it's been nuked by the treatment and is dormant. No idea if that's even possible but that's what we're hoping for.

So yeah, I try to be positive but brace myself for the worst.

Annoying about your hv kerri, how old is your baby?

I think you just have to live with the hope don't you, other wise you and your world will just collapse. Cross each bridge as it comes and all that. it's just hard, i guess it doesnt get any easier, but at least the shock would have gone in a few weeks, which might make it a little easier...

my baby is 18 weeks, a lovely happy baby who is very bright, but is apparently not gaining enough weight each time and therefore dropping down the centiles. She has bad reflux which no-one was willing to treat but since i'm talking about weaning, the doctor has now prescribed baby gaviscon to try and keep most of her food inside her!! its early days but seems to be working well - even if she does want to eat all my food, i'll hold off for another couple of weeks to see how she goes!!

keeping my fingers crossed for your dh.

lenaschildminding - that song is by the Sugababes and it's called Change. Sad though ...

Happy New Year to everyone on here. Hope everyone managed to have a good Christmas, despite everything. Ours was quiet but good. We put the whole cancer thing out of our minds for the whole holiday. Now it's over, we've got to start thinking about it again as DH goes in to hospital on Friday to have his Hickman line fitted and start second-line chemo. To be honest, I feel worse about it this time than first time around. I had no idea the first time how hard it was going to be dealing with a very poorly husband and two small children. Now I know what I'm in for and I'm not looking forward to it. When he's feeling sick and tired, he can't cope with all the normal noise and squabbling that goes with kids so I have to try and keep them quiet or go out to let him rest. Not easy at this time of year! Luckily, I have lots of good friends who say come round whenever you need to plus there's a good soft play near our house and we spent a LOT of time there. I'm also finding it hard to be optimistic as we'd hoped the first chemo and radiotherapy would buy him a year or two but he only got a couple of months. It's harder to raise my hopes this time that he'll get a decent period of remission (and very scary to think of what will happen if he doesn't).

So how is everyone else doing?

Keri, thanks for asking about DD.

Just seen orthopaedic doctor, she has lactive joints throughout her body, he wants an x-ray of her hips to rule out any further problems, the wait today for x-rays was 3 hours and that would have been through dinner time and we were not prepared for that, so I'm going back tomorrow morning for the x-rays.

As far as standing up and walking are concerned, he says her feet are too small at the moment, she is too young and don't worry!

Too young to stand alone? Too young to wait bare on her legs? Too young to walk?

She is 15 months, I know you shouldn't compare, but my other two walked at 12 months, her best friend is 2 months younger than her and walking. It's not that she is lazy and doesn't want to walk, she's frustrated because she can't do it, her legs just buckle beneath her.

How can she strengthen the muscles to support her joints if she can't stand up and walk? How can she walk if she can't strengthen the muscles to support her joints?

AAAAAARRRRRGGGGGHHHHH!

brick wall.

head.

bang!

mummydoit, i really hope everything goes ok for you and your dh this time round - i can imagine the fear and worry this time round are far worse than last time when your hopes weren't jaded. but whos to say that all his cancer needs is another dose of chemo to put him into remission? perhaps last time it just wasnt enough. i'll be thinking of you.

Please could someone tell me what a hickman line is ? my dad has to have chemo intravenously, is this a hickman line? if so, does it stay in continuously? he has to have chemo for 2 hours every 3 weeks - i have no idea whether this is a lot or not?

lena, i'll be thinking of you tommorrow and hoping everything is ok, or at least you find out the problem with your dd's legs is nowhere as bad as you fear - but i know children who cant walk at 15 months so i wouldnt worry too much. good luck

A hickman line is a tube that goes into the artey near the heart. it comes out of the chest, just below the collor bone and has 'lumens' on the end. They can have one, two or three of these lumens. They are connectors which the chemo then 'plugs' into.

Jack had one with a double lumen. It depends on how much chemo you need.

They go in in theatre under a general.

Once in, you can't feel them.

Mummydoit...love and prayers. XXX

how did the x-rays go lena? any news?

No results yet Kerri, thanks for asking.

How's baby? A friend of mine has a baby with reflux and the gavisicon works wonders.

DD dropped a few centiles when she was 3 months old, she was 8lb 6oz when she was born, on the 75th centile but she dropped just below the 25th, she has now stabilised on the 25th. No-one ever seemed bothered about it though. She eats well and that's all that matters I guess.

The best person to ask about what chemo is like is Vev, she posted back in November, she was diagnosed with Leukaemia in July, obviously, I know from a parents perspectice but Vev can say what it feels like to be on the recieving end.

I am hoping she is doing well, as we haven't heard from her fo a while.

If you're reading Vev, let us know how you are doing. X

Love ang cyber hugs to all!

My friends DD was diagnosed with Leukaemia weeks after Jack was diagnosed with NB. They were both 3 at the time and we spent so much time together our families became very close, my friend is now DD's Godmother.

Jack and Fran used to sit in bed together playing and they used to say that when they grew up they would get married!

Sadly, that will never happen.

Now DS2 wants to marry her!

What's even more sad is that Fran relapsed in May last year. Visiting her in hospital for the first time was so hard, Jack always had the bed by the window, it was known as Jack's bed, walking onto the ward I hadn't been on since he was sent home to die was really tough, then turning the corner and seeing Fran sitting up in Jack's bed sent shivers down my spine.

Watching Fran go through all this again has been heartbreaking, the worse was when she lost her beautiful hair, which she'd been growing for the last 7 years since it first fell out.

Thankfully, she is responding well to treatment, she doesn't need a bone marrow transplant, she has managed to go to school, she has spent Christmas at home, tomorrow she will go to hospital for intensive chemo which will last 2 weeks, then she will be on maintainance.

Coincidently, Frans dad is a registered podiatrist and also Lectures on podiatry at university. I asked his opinion about DD's feet. He has told me he can get me a private appointment and orthostics WILL help her. (supports for her feet which the doc on monday told me won't do any good!).

thinking of you lena, hope the results/diagnosis won't be too long in coming, i imagine the wait is the worst part of the whole procedure because your mind must be in overdrive. Poor fran . i bet that was really hard for you to see her there, and hard for everyone involved with her to see her back in hospital. I hope she continues to improve. >

baby is fine thanks, she's settled fantastically on gaviscon and today looks a bit plump instead of the scrawny beanstick she's always been so hopefully we're turning a corner and i can tell my health visitor where to get off (if i ever bother to go back and see her!) Reading this thread though just makes reflux etc seem so trivial i almost feel ashamed to reply

will ask vev if i see her around, thanks for tip. dad goes in on monday so i guess i might be able to ask him before i get to find vev anyway.

onlyjoking, is everything ok with your dh? you havent posted on here for a while. Thinking of you.

Kerri, don't feel ashamed, your baby is just as important as anyone here, just as mine is.

It's a wierd thing, having friends that we have never met, but this post has made us friends and friends share all worries and problems, I'm sure anyone else will agree with me on that one.

I guess in light of the pain we all share in being so close to cancer, any illness in our families is a worry and I think we have the right to express our worries and concerns, however trivial they seem in comparison.

Remember...It's good to talk!

Well, we're officially back on the chemo treadmill again. Yesterday was pretty grim. It's a different regime to the one DH had before and we weren't sure what to expect. The dr had said inserting the Hickman line would be a quick procedure under local, then they'd attach a bag of drugs that DH would wear for 48 hours. We guessed the whole thing would take a couple of hours max. How wrong we were! The procedure was pretty quick but started half an hour later than we thought. Then I had to go down to theatre and be shown how to flush the lines. Then they wanted DH to wait an hour before starting chemo. After that, they had to flush through various bits and pieces, including one bag that took an hour and a half. There was a lot of waiting about for things to come up from pharmacy and the various bags to be connected and disconnected. All in all, it was after five by the time it finished. I'd asked a neighbour to take DS1 to school but had made no provision for picking him up as I'd expected to be back in time. Luckily she is an absolute star and agreed to do it at short notice and kept him till we got home. We had awful Friday rush hour traffic so the journey back took 90 minutes instead of the 45 it should take. DS2 was with us and I have to say he was brilliant. He behaved so well all day. Can't have been much fun for him stuck in one room but he played with the toys we'd taken him, watched a DVD and was so good. I took him down to the cafe for lunch and we went out for a walk later on but it must still have been pretty boring for him. We have to go back on Sunday for the bag to be removed then do it all over again in two weeks. There will be six cycles of this. Hopefully, the next five won't be so bad as we won't have the Hickman line procedure to go through but it still looks like we'll be at the hospital for three hours rather than the quick 'in and out' we were hoping. Poor DS2 is just going to have to miss nursery on those days as there's no way we can get there and back in time.

mummydoit, so sorry it has been a rough start to a long haul.

I don't understand what you meant when you said the next time you won't have the hickman line thing to do again.

The large doses of chemo Jack had through his hickman lines always needed to be followed by a 'flush', a bag of saline. Smaller things were followed by a syringe of saline that had to be pushed through slowly. Unfortunately, the procedure is time consuming.

Jack had 4 large bags of chemo, through his hickman line, all at once on 24hour infusions, over 4 days, every two weeks! With all the flushes, then antisickness drugs, pain relief, NG feeds and the oral meds we put through his NG tube so he didn't have to taste them, it seemed he was permanently attached to his drip stand.

Then he'd get a bug in his line and need IV antibiotics too!

We never saw home for 7 months!

At least they have shown you how to flush the line, we had to sit and wait for the nurse to do it, sometimes we'd be waiting forever!

As strange as it seems, it soon becomes 'normality'.

Sending cyber hugs and prayers.