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.

This was written by a cancer Mum, who lost her DS in July. I think it's very honest, and reflects so much of
what we feel. I hope it doesn't upset you too much, I just wanted to share it.

I HOPE...

I hope you never have to hear the words, "Your child has cancer."

I hope you never have to hear, "The prognosis is not good."

I hope you never have to prepare to undergo radiation or
chemotherapy, have a port surgically inserted into their chest, be
connected to IV poles.

Look at you with fear in their eyes and say, "Don't worry Mommy,
everything will be okay.'

I hope you never have to hold your child as they vomit green bile.

I hope you never have to feed them ice chips for lunch.

I hope you never have to watch the "cure" you pray for slowly take
away their identity, as they

lose their hair,

become skeletal,

swell up from steroids,

develop severe acne,

become barely or unable to walk or move,

and look at you with hope in their eyes and say,

"It's going to be okay, Mommy."

I hope that you never have to stay in the hospital for weeks, months,
or years at a time, where there is no privacy, sleeping on a slab,
with your face to the wall, where you cry in muffled silence.

I hope you never have to see a mother, alone, huddled, in a dark
hospital corridor...crying quietly, after just being told, "There is
nothing more we can do."

I hope you never have to watch a family wander aimlessly, minutes
after their child's body has been removed.

I hope you never have to use every bit of energy you have left, with
all of this going on around you to remain positive, and the feelings
of guilt, sorrow, hope and fear, overwhelm you.

I hope you never have to see a child's head bolted to the table as
they receive radiation.

I hope you never have to take your child home (grateful but so
afraid) in a wheelchair because the chemo and radiation has damaged
their muscles, 35 pounds lighter, pale, bald, and scarred.

And they look at you with faith in their eyes and say, "It's going to
be okay Mommy."

I hope you never have to face the few friends that have stuck beside
you and hear them say, "Thank God that is over with,"...because you
know it never will be.

Your life becomes a whirl of doctors, blood tests and MRI's and you
try to get your life back to "normal".

While living in mind-numbing fear that any one of those tests could
result in hearing the dreaded words...

"The cancer has returned" or "The tumor is growing."

And your friends become even fewer.

I hope you never have to experience any of these
things...Because. ..only then...

Will you understand.. .

mummydoit, hows DH?

my mum is sadly getting worse. She was faced with going back into the hospice last friday, and decided she "wasn't ready to die yet", but yesterday said that as soon as there is a bed available she will take it . She wanted to know that wherever she is, she wants her family around her at Christmas.

I feel so isolated from it all, and have tried calling tonight but there is no answer from my sister's house, nor her or her DH's mobile phones.

I'm hoping that if things had changed for the worst, someone would have called me??

mummydoit, I hope you are OK. The funeral must have been doubly hard for you and your DH.

I noticed that this thread has gone a bit quiet. Please everyone keep posting. I, for one, could use some support at the moment.

Hi Daisy

Sorry to hear about your mum. I am sure you would have heard if there had been news. I am checking in from time to time but have just gone back to work after ML so my time is limited.

Will be thinking of you over the coming days. I'll check in again when I can. Take care and best wishes.

thanks dolly

Are you enjoying being back at work?

Daisy, have you changed your name? I am thinking you were Daisynightingale?

Forgive me if I'm wrong!

In an earlier post you said your DS was going to see your Mum, did you take him? How did he cope?

My DS saw his nan when she was dying of Liver cancer, he told me she was in wheelchair and looked very old and green.

He was very brave about it all, he doesn't really remember his big brother, although we do look back at the photo's sometimes and on some of them he looked very poorly indeed.

It's hard to know what goes through the minds of little ones, after all, we can't understand why this horrific disease invades our lives and steals our loved ones, so how can they?

Ds knew his nan was going to die, but it still shocked him when it happened. He got very upset, I tried to console him by saying she's better now and she's with Jack but he sobbed "but it's not fair on Daddy and Grandad, who will look after Grandad now?".

His Grandad had Diabetes and both Kidneys had failed, when his nan was given weeks to live, he should have had a leg amputated due to gangreen but he refused to go to hospital because he wanted to stay with his wife.

After she died, he still refused the op and died weeks later, maybe from the gangreen, more likely from a broken heart.

DS lost both his nanny and grandad this summer, within weeks of each other.

He has coped well, but sometimes I wonder whats going on in his head.

He is convinced everyone will die of Cancer.

He keeps asking me if I will get cancer and then he'll get it because Jack did.

It's so difficult with kids, I can't say no, I won't, no, you won't, because if it ever happened he'd hate me for lying. I just tell him that no-one knows what life holds for us and even if we do, people do survive it. Luckily some of our friends kids have been in remission from Leukaemia for the last 7 years, so I can use them as examples.

Sadly though, one relapsed this year, but she is doing well, bless her.

Sorry for waffling!

yes I was lena...this is my christmas name...I'm usually daisyboo or daisyandbabybootoo; daisynightingale in deference to helping look after mum and now Christmas...

I'm off up there tomorrow, but things aren't looking good. she has a visit from one of the hospice nurses everyday, to assess her to see whether she needs to go in (no beds or she would be in there already . I spoke to my BIL as my sis couldn't even speak on the phone, she is so upset. It is not looking good at all. Mum has asked that me and my brother go see her, and BIL thinks she is just getting everything together for a final goodbye. So, I'm off up there, not knowing whether I'll be back home this side of Christmas.

DS did go with me last time, and he was fine, as although poorly she was up in her chair most days. Onlt two weeks on and she is rarely even out of bed. Part of me wants to take him this time, but the protective part doesn't want him seeing her any iller than she was the last time. God this is so hard; I feel like I'm torn between the two parts of my family. And DH works away so it's not as if he's at home to look after DS so I can stay in Scotland. I need to be here for DS, but want to be there for mum and my poor sisters who are caring for her 24/7.

sorry for just ranting on; I just needed to ge that down

Oh, Daisy, I really feel for you. It is a hard decision whether or not to take DS, I didn't want my Ds to see his nan when she got worse and because he only goes to his dads on alternate weekends, he didn't get to see her again.

DS1 went downhill very quickly at the end, on Monday and tuesday, he was up and about, wednesday and thursday sleeping more, then on friday he sat up, ate his bowl of readybrek, gave me a huge hug and then went back to sleep. He never woke up again. He died days later.

It was very peaceful though, just slowly drifted away in his sleep.

I hope it is like that for your mum.

sending love and hugs.

(oh, don't apologise for ranting...thats the point of this thread, somewhere you can let itb all out with people that understand. X)

This thread has gone quiet, I am struggling at the mo, although (hopefully)this is not cancer related, what happened to Jack is making me feel the way I am. So, I guess, in a round about sort of way, it is cancer related...

I never dreamt I'd be going through tests and scans again with
another child of mine.

DD is almost 15 months old. She has suffered from constipation
since birth, for which she sees a consultant at hospital, despite
laxatives, there has been little to no improvement.

At 6 months, we
noticed her eyes go in the wrong direction and after an initial
check up, she has been refered to hospital for more tests.

At 12
months DD could not crawl, she just dragged her legs behind her
on her tummy. She was refered to physio at the hospital.

DD did start to crawl at 13 months but she cannot weight bare on
her legs. Her hips, knees and ankles all 'pop' when she moves. If
I try to hold her up she becomes distressed.

A few weeks ago we saw her consultant for her constipation. She was
given stronger laxatives as her bowel is still clogged up, they
haven't made much difference.

Yesterday we saw the physio about her legs. She took one look at
them, felt all her joints 'popping' with every movement and said she
wouldn't touch them in fear of doing more damage, she noticed DD
has one leg longer than the other and suspects a hip problem. She
is writing a referal for scans and xrays.

She's got her eye apmt tomorrow and I'm dreading that. It's not
going to be nice for her, I've been told it can take 4 hours, they
will be doing various tests on her beautiful big blue eyes, one
involves putting dye in them.

Thankfully DH has taken the day off work to come with us.

Being in hospital, scans etc, brings back such painful memories.

I lay awake for hours last night thinking of leg pain, hip problems,
constipation and what Jack's scans showed up. A tumour the size of
a football.

I keep telling myself DD hasn't got Neuroblastoma, but it's not
knowing what IS the problem that's eating me.

If it was just one of her three problems, maybe I'd be coping
better, but the three together is painting a duller picture.

I thought I'd done with Childrens hospital wards, they make me so
uneasy.

This time of year is so hard and painful anyway.

It's so painful. My wounds from loosing Jack are still so raw.

I just needed to to 'talk' before I fall apart.

DH just says the usual...'you worry too much' and 'you think too much'.

I know he's right. I just can't help it. I don't think I can cope with more childrens hospitals.

Gosh, you really do have a lot on your plate, Lena. No wonder you're so worried and down. I wish I could say something to make you feel better but all I can offer is try not to focus too much on the worse case scenario and wait until you have some facts. Easier said than done, I know.

Just wanted to share this...

My DS has arranged a sponsered mountain climb in Jack's memory.

This is the link.

www.justgiving.com/climbingforjack

Hope it's ok to post this on here.

hello lena i hope things are looking better for your dd. my daughter, Molly, was diagnosed with neuroblastoma in july 2007. it turned out to be stage 2b and so far she has had surgery and no further treatment (thank goodness). blood samples, scans, urine tests etc are always going to remind me of that time. i'm so sorry that you are going through a barrage of tests again with your daughter. i can't express how sad i am that you lost Jack- it is truly heartbreaking.

Lena - good luck to your son on his climb.

We've just suffered another blow. DH got the results of his latest scan yesterday and the cancer has got worse. The spots on his liver are bigger and it's now in the lymph nodes around the liver. The main tumour in the oesophagus has grown too, though we guessed that as he's started to have difficulty eating again. We'd hoped he'd be able to take part in a clinical trial of a new drug but the biopsy and blood test results show that he's not eligible so he's going to start on a more established chemo in the New Year. His decision to postpone treatment until after Christmas. I'm not happy about it - I'd rather he got on with it straight away - but his oncologist didn't seem to think a couple of week's delay was a problem. He has to have a Hickman line fitted to administer this kind of chemo (he was on tablets before) so that won't be fun. So, here we go again. Twelve weeks of hospital visits and side-effects to look forward to.

It really does feel like fate/god/whatever has it in for us. It's only three weeks since I lost my dad to the same bloody cancer. Isn't that enough? Couldn't we have just enjoyed one Christmas before it got worse? Poor DH is hardly going to be able to eat any Christmas dinner. We had a really bad Christmas last year as he could hardly eat then and I'd hoped for a good one this year to make up for it but it looks like it's not to be .

oh mummy that was not the news you wanted, why do they give that kind of news just before christmas.
christmas is going to be difficult for you this year after losing you dad only weeks ago, i think of you and your family often.

Just bad luck that it worked out DH had his scan early December and we got the news now. It came as no surprise, to be honest. It was borderline at his last scan whether he needed chemo so we knew that, barring miracles, he'd need it this time. Plus his eating has deteriorated so much it was obvious things were getting worse. We're just hoping this course of chemo has longer-lasting results than the first one. It would be good to have more than a few weeks remission.

I think about you and Steve a lot too. Sometimes I feel so detached from normal life. I stand at the school gates and look at all the other mums, laughing and joking, and feel so isolated and alone, like they can't possibly understand what life is like for us. It does help to be able to come here and talk to people like you who do understand, though I wish none of us were going through this.

I hope you and your family manage a good and happy Christmas. We're going to have a bloody good one, I'm going to make sure of that!

it is a "different" life isn't it, i always thought we were used to different with 3 kids with autism, then we get another "different" to adapt to and "normalize"
we are lucky we have some very amazing mates who help as much as they can, the Mac nurse is dab and the kids SN school are very supportive and will walk alongside us throu this, and where would i be without you guys on MN, the evenings often seem the hardest when all are in bed and i sit here night after night wishing things were different for us and for you and MB and everyone else dealing with this stuff.

Wow there are some really inspiring stories on here

My mum has just been diagnosed so I am going through the first weeks of hell in coming to terms with it all, but I realise how much more some people bear so well

I feel like a yo yo at the moment - sometimes all I want to do is hide in my bedroom, under the blanket, like my dd does until it all goes away others i can be quite cheerful, like at dd's Cubs Xmas party this evening which was really sweet. The only thing really keeping me going is the dc's.

I think the most difficult thing for me is to face the prospect of my mum no longer being the 'powerful' head of the family as she always has been but the one needing support and help; I hate the thought of her getting so tired and sick through chemo

My last promise to my dying grandmother 8 years ago was to look after my mother and now I feel I have let her down because she has to go through all this and i can do nothing to help.

It has been helpful to read that it is normal to feel like this in the first weeks, and also the advice to live one day at a time - not something i am very good at (I am the arch planner) but I will certainly try

Glad you found this thread and I hope you can get some support and comfort here. You'll be surprised at how quickly you adapt and how what seems unthinkable now will become normal. The thought of chemo and side-effects is daunting but you soon learn to cope with the reality of it. Be prepared for emotional swings in your mum as those can be the hardest to cope with. DH would have awful black mood days when nothing I or the kids did was right. Many times I had to take the boys out for the day as they are too young to understand why Daddy was in a bad mood. If your mum gets days like that, just remember it's the chemo that's doing it and try not to let it get to you.

Jomole, I am sending love and prayers your way for Molly and your family. Bless her, I hope with all my heart that a cure will be found for this monster.

Jack did have stage 4, he was only given a 10% chance of survival because his little body was riddled with disease.

I am so glad that Molly's had not reached that stage and she does not need any further treatment.

Thank you to mummydoit and HumphreyCushion for sponsoring Charlie, we deeply appreciate your generousity.

For everyone on here, whatever stage you are at with this monster that invades our lives, be strong, Christmas without loved ones or with poorly loved ones is so difficult, but our angels are with us, they want us to be happy, so have a good Christmas, as far as possible in your own circumstances.

Love to all. Merry Christmas. X

Sending all of you love and prayers this christmas ... agree with you mummy ... we;re going to have a bloody good one too. DH is supposed to be starting chemo on xmas eve but he's going to delay till boxing day ... it made him feel so terrible last time. This is his 6th month out of 6. It's going to be so hard not actively fighting this thing. His last scan showed no re-growth which is great news ...

What mummydoit so eloquently said "I stand at the school gates and look at all the other mums, laughing and joking, and feel so isolated and alone, like they can't possibly understand what life is like for us." ... I feel like that so much of the time. I went out with friends recently and came away feeling so lonely and just different to them. But of course you could be looking at me mummydoit or me looking at you at the school gates and we'd never guess what the other was going through would we. Anyway, am going to try to get into the christmas spirit and get festive . Merry Christmas everyone x

lena, sorry things are tough with your DD at the moment and I hope they get to the bottom of it all soon.

mummydoit, I'm so so sorry that you have had this bad news . when my mum had chemo for non-hodgkin's lymphoma 4 years ogo, she had her first treatment a week before Christmas. It was very hard for her as she felt so awful and sick from it. It seems like we've had the shit piled on us too. You'd think that having survived one cancer she'd be spared anything else, but no.

News isn't good for us either. We did a mad dash up to Scotland on Friday as she took a real turn for the worse, but she rallied again on Saturday (probably seeing us lot perked her up a bit). We came home on Sunday, but things aren't looking good. They think the cancer has now spread to her brain as she is very disorientated nd is losing her sight, and is coming out with some of the most extraordinary things.

She was having a tube into her stomach today to administer the drugs direct;ly as she is having real trouble swallowing, and the phlegm that she is constantly trying to clear is probably a tumour in her windpipe. They are giving her a sedative with te morphine, and it is really only a matter of days now.

She had hoped to make it till Christmas to see her grandchildren open their presents, but it doesn't look like it.

DH will relieve me here tomorrow and I'm going up there on Thursday. thankfully we can stay until after New Yea, a si feel so helpless here and want to be there helping my sister's to look after her.

Daisy, so sorry you're going through all this. It is bad at any time but made so much worse by the time of year.

I'm a bit upset at the moment as DH had his annual appraisal at work and it wasn't as good as usual because of the amount of time he's taken off work and, they say, he hasn't applied himself as much when he's been there. They accept there are mitigating circumstances (big of them) but feel they can't give him the same bonus as last year as he hasn't put in the same performance so he's getting half of what he got last year. I know we're lucky to get any sort of bonus and I am grateful, really I am. It's just I feel they're being really unfair to him. He didn't have to go to work at all but went in all the time he was having chemo and feeling tired and ill. As for not applying himself, he's been diagnosed with incurable cancer and has just seen his FIL die of the same cancer - of course his mind is on other things! I just feel they think they can get away with paying him less than his colleagues because he's not in a position to leave and get another job. He wouldn't pass a medical.

On the plus side, they're restructuring his team so he has less responsibility and can take all the time off he needs for future treatment and his job will be less stressful. He's very happy about that. And I shouldn't be too upset with his company. They've kept him on full pay and been fine about all the days off he's needed for hospital appointments and treatment.

How awful mummydoit; it surely wouldn't have hurt them to make a better gesture than that. It is good that they are reasonable about his time off though.

Mum is being admitted to the hospice today. She was so determined that she would see all her grandchildren open their Christmas presents, but she told my sister yesterday that it is time. We don't think she'll be with us after the weekend . But she is really suffering now, so I suppose it's for the best.

I'm going up there tomorrow, or later today if DH is home at a reasonable time and I'm organised (better get off here then, eh?)

I hope you can have the Christmas you want.

Thinking of everyone else at this time.

daisy xx

Daisy, my thoughts are with you and your family. When the time comes, it's a cliche but it does help to think that their suffering is over.

I know, and that is what is keeping me going. That and the fact that I still haven't finished organising all I need to for Christmas.

Thanks for your kind words, and take care of youself and your family

I'm not sure I'll be able to log on until after New Year, but will try to let you all know how things are.
daisyxx