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Children with cancer

997 replies

KinkyDoritoWithFairyLightsOn · 22/12/2011 09:31

Hi all

I'm going to start this and keep bumping it as I don't think there is a thread for supporting anybody whose child has cancer and I know there are others about. In part, this is a good thing as it shows that it is still very rare, however it doesn't feel like that when you are sitting in a children's oncology ward.

I will be around and am happy to chat to anyone who needs it.

My DD is 13. She was diagnosed with ALL in January. She has to have 2.5yrs of chemo in total, if everything goes according to plan.

I also write a blog that is listed on MN. The catchily titled: The Acute Lymphoblastic Leukaemia Diary.

Best wishes to all.

OP posts:
KinkyDorito · 06/07/2012 18:21

Good luck MrsDV!!! Please sponsor if you can:

www.mumsnet.com/Talk/am_i_being_unreasonable/1511765-Dont-even-BOTHER-trying-to-tell-me-I-am

Stinkyfeet · 06/07/2012 20:07

Thanks for linking this, Kinky, I've sponsored them both.

How are you coping at the moment? I can't help but feel guilty that ds is so well, both from the disease and the treatment. It's so unfair that expat and her family are going through such hell and agonising waiting, while we're breezing through it all. Not that I want it to be worse for us, I just wish it could be easier for everyone else.

KinkyDorito · 07/07/2012 12:07

It is cruel and unfair when you see others really suffering. When DD was in a fortnight ago, there was a girl the same age, also with ALL, at the same stage of treatment, and her kidneys were failing. Her poor dad was on ICU with her through the day, then sleeping on the ward at night. It's horrible. I have no idea what happened to her Sad.

DDs tests are next week. If her counts are still low, they have to check her bone marrow to see if leukaemia has come back. I just feel so incredibly tired. I've driven DD ands DS to see my parents, Dsis and nephews for the weekend. If we do have bad news next week, we won't be able to do anything like this for a while.

Personally, I would rather be in bed with the duvet pulled over my head. Depressed? Me? Grin

mackerella · 08/07/2012 01:47

I haven't posted here for a while, but what Stinky says really resonates with me, especially after the incredibly sad news that Aillidh lost her fight against AML late last night :(

Someone up thread (QueenMarigold ?) described her DC as having been "damaged" by the experience of cancer - and that's exactly it: my DS has been left permanently disabled, both by the cancer and by the treatment, and the whole experience has shaped and blighted our lives in a way that can never be erased by any number of years of remission. DS is at a very high risk of second cancers in later life and there are all sorts of other issues that complicate and limit his future life choices. BUT ... DS is "lucky" to have a cancer with a relatively high survival rate (although his chances of dying are very much greater than those of a child without cancer!) so we've sort of put the possibility of death to the back of our minds, especially now we've got through the critical first year of diagnosis, relapse, aggressive chemo, etc. And when I read about families who are not so lucky, then I can't help feeling guilty that we're somehow having it "easy", which is mad. There's a kind of double-think going on in my head - on the one hand, I can see objectively that we're in a pretty shitty situation and on the other hand, I feel guilty and cross when people sympathise too much (even though it's actually what I want them to do) because things could be so much worse, and because you can't spend your whole time dwelling on how awful things are because you'd go mad. So I spend my time going round in futile emotional circles instead and feeling unfairly resentful towards family and friends who can't say the "right" thing :( Anyone else feel like this?

KinkyDorito · 08/07/2012 09:35

I have written some things in this post that may be upsetting for parents to read, about the treatment of cancer. Please don't read this if you will become upset.

I remember Ade Edmondson being interviewed about Jennifer Saunders having breast cancer, and saying it's not like a 'roller coaster' of pain and emotion, it's a kind of long lasting, endless drag of misery. I am totally changing exact word useage, but it's that kind of thing!

Here: "Ade Edmondson wants to get something off his chest. No one, he says, 'battles' cancer. Neither is it 'a rollercoaster ride'. 'It's just a long, slow, miserable grind,' and he wants me to quote him on that verbatim."

That is so true, and I am expecting the repurcussions of treatment to continue this kind of worry and upset long into the future. I just hope that as she gets older, it does become easier. But, I bet, it will still rear it's head on a regular basis. My mum's friend is 2 years off treatment for breast cancer. One little thing happened, and the site of where she's had radiotherapy on her breast flared up quickly with infection. Another, she said, reminder that it will be with you forever.

I won't lie, I think we are destined to spend the rest of our lives hoping our DC are clear of this thing. We are pumping so much toxic shite into them to stop them from being killed by something that would have killed them, but not being completely aware of what the result of that will be. Will their organs be okay? Will their bones be okay? Will their fertility be okay? Will they get cancer later? We have to blindly follow as it is a case of do or die, but the 'do' could also kill them. The whole thing is horrific, and brutal, and so, so, so unfair.

Nobody can help either. I think the parents have to create this illusion of strength for their children, whilst our minds rattle through all of the potential outcomes. Other people will always say the wrong thing/be futile/ etc as they have no idea what you are going through. How many of them have had to hold their baby down whilst they try and find yet another vein for a cannula, and have to give up on the arms because they are too brusied, so go for legs instead? How many of them have had to sit up all night with a sick bowl, stroking their child's back as they vomit and vomit? How many of them have had to hold their teenage daughter close as she pulls handfuls of her own hair out? How many have had to watch their 2 year old be heavily sedated so they can be put on a machine that removes the stem cells from their blood? Lumbar punctures? Bone marrows? Brain surgery? Organ failure? Serious infection? ICU? Even, the first time you see your child go under anaesthetic, knowing that this is serious, and they look so little on the table?

The closest I came to real understanding was a colleague at work when she said to me her daughter (3) had been taken into hospital for the weekend. It was a minor thing. She said she was worried sick, awake all night, felt ill herself, BUT she knew her daughter would get better. And she came to me the following week and said, I had to say this to you, all I could think about was you and your DD, and how I cannot imagine what it would be like to walk in your shoes. She's right, nobody can.

Even within our community, we all have had different experiences, and we are all different people who deal with things in different ways. You are completely entitled to feel miserable, depressed, cheated, worried, scared stupid, unlucky: I could go on and on, because, as soon as our children got cancer, this became our lives. But you are right mackerella, you have to try not to dwell, for we will go mad.

My prayers and thoughts are absolutely with expat today, and will be for some time. They will also be with Olivia's parents, and Jess', and Thomas', and Sadie's, and, as always, with Billie's.

It is an evil, evil, bastard illness, and all the trips to Disneyland in the world will never make up for the journeys our children are forced to take through treatment and beyond.

Stinkyfeet · 08/07/2012 10:21

Kinky and Mackerella, you've both put into words what so many of us think I'm sure.

Kinky, you've reminded me vividly of ds in hospital after his surgery - he would grip my arm, digging his fingers in, screaming at me through gritted teeth "I hate you. It's your fault I'm here". And having to stay calm and strong and not being able to do a damn thing about it.

Hope everyone is OK this morning.

Vev · 08/07/2012 15:16

I suffer from that evil, evil bastard illness. Five years on - went for my final bone marrow test last month, thought I was going to be given the all clear but oh no, told I had to be monitored every six months "'cos there's no guarantees, all good at the moment and we do what we can. Have to have regular blood tests blah de blah". I felt like crap. It's never ending. I do have a bone marrow match in my brother, don't know what I'd do if it came to that to be honest.

It must be horrid to have to watch your children go through it and rather me than mine.

ToothbrushThief · 08/07/2012 15:37

Other people will always say the wrong thing/be futile/ etc as they have no idea what you are going through

You're so right. Even when we do not speak, aware of how ignorant we are/likely to say the wrong thing... I think we all do think

I realise how unhelpful that is but didn't wish to ignore your post either.

KinkyDorito · 08/07/2012 15:54

Toothbrush I don't want to make it sound like it falls on unappreciative ears. I would rather people spoke to me and wished us well rather than pretend it isn't happening. I possibly didn't make this very clear in my post, and thought afterwards that I haven't expressed myself very well at all. It's very difficult to explain. I think mackerella is correct when she says she doesn't want sympathy (there's always someone worse off), but she does want it too.

It's an awkward, and lonely, thing because people can't take it away for you, even though I'm sure they would want to.

Where I work, I go in and people have stopped even asking me. And it's so weird: I can be in hospital with DD, critically ill, nasty infection, hear about other children we know passing away, then she gets better, and the next day I'm at work and it isn't mentioned. I think my head might explode from it all at some point!

Vev I'm sorry to hear that you have this too Sad. I know that when DD finishes treatment, she gets to go to clinic forever, afaik. It starts off every couple of months, then every six, then annually. But, from what I gather, she goes every year after. Like you, I don't want to even think about bone marrow. DD has to have hers checked early next week (counts have been unexplainedly low for weeks now) to see about 'disease': relapse. Sad I really, really hope her counts have come up. Bone marrow is a place I really don't want to have to go. Sending you love. I hope you are going to celebrate the official end of treatment, even though they want you back for checks Smile. I'm planning a big holiday next year. We all need it!

Vev · 08/07/2012 17:52

Thanks for your kind words Kinky. Thanks

I do hope your DD's okay, it's a nightmare. Counts are a nightmare when you're still on treatment, up and down all the time. It's a roller coaster of a ride.

Theglassishalffull · 09/07/2012 22:12

Hi all, just wanted to say hello, hola, and sut mae to you all. Although I don't have a child with cancer I do work with a child with ALL as well as SEN. I have worked with him since he was 2.5. He was 3.5 he was diagnosed with this crap waste of space disease. The phone call his mother made to me after he was just diagnosed was horrible, his usually calm, happy Mum was in pieces( as was I after getting off the phone) she cried and thanked me for all I had done for her son.

Two hours later she rang up and apologised for being upset and reassured me that his chances were very good and promised to keep me in the loop. I then received regular texts and phone calls from her throughout the 6 months he was in hospital.

When I visited the first time it was awful, he was slumped over, crying in pain. The usual happy boy was a gost of himself. A day later he was in intensive care unit. The next time I visited he was much much better.

After many ups and downs he is now in school where I continue o work with him. He is so resilient and his Mum, Dad and little brother are brilliant. Recently we went on our school trip, luckily his bloods were good and he was able to come, that was one of the best days of my career so far. I have since taken him out for his birthday which was an amazing and wonderful day. A far cry from his birthday 12 months earlier!

Theglassishalffull · 09/07/2012 22:16

Just wanted o finish by saying this thread is great and you are all so wonderful ( hope that doesn't sound patronising). I wish you allthe best.

KinkyDorito · 12/07/2012 06:54

Theglass Hello and welcome. It's such an awful thing to see somebody that you care about go through.

We're hospital today for spinal chemo, MRI results, Xray and to see whether her counts have come up. If not, bone marrow to check for leukaemia.

A long and stressful day, I think.

I hope everyone else is doing well. At least it is, for a change, sunny outside this morning!! Smile

FarloRigel · 12/07/2012 11:11

Only have a minute but just checking in to wish everyone all the best. Hi to all the new posters, I'm really sorry you are going through what you are.

kinky you'll be in my thoughts all day today, I hope her counts have done their stuff and you're spared the bone marrow aspiration.

Thanks to everyone who shared Olivia's story or helped in any way. It absolutely meant the world to her parents to get her back to Scotland and everyone caring so much and coming together so fast to help them and their little girl is of huge comfort to them.

KinkyDorito · 12/07/2012 18:47

I'm just so sorry you all lost her Farlo Sad.

Bone Marrow not needed, thankfully. Other tests still going on for iron overload.

Thank you for thinking of us Thanks

minmooch · 13/07/2012 07:16

Hello everyone. Sorry I have not been around - I have been lurking on 'Relationships' as my relationship with DH crumbles fast and furious. I use it as a distraction to the worse reality of my son :-(

Farlo my love and thoughts are with you and Olivia.

Kinky - your post on Sunday morning was hard reading but you summed it all up perfectly Sad. The damned-if-you-do and damned-if-you-don't choices we get to make for our children are no choices at all. The whole situation is relentless and that males it so hard to cope with. Every day I wake up exhausted, I feel sick with exhaustion most evenings, I can't ever imagine a day where I don't feel tired. I can't ever imagine a day where life is normal again Sad.

My son sleeps through the night most nights now, except for if his feed pump bleeps, but it makes no difference to how I feel - the exhaustion is bone deep and no amount of sleep takes the edge off it.

I am divorcing DH at the moment and that is hugely stressful, plus selling one property to release cash, sell our family home and buy a house for my boys, dog and cat to live in. I hope that when this part is done (hopefully move in 6) weeks I will have a little more energy. I hate, hate, hate my husband for being the shit he has been whilst my son has been ill and sucking energy from me at a time when I need it all to ficus on my son. I will never forgive him for piling on the shit at such a shit time - daily I live with him adding more and more. He has no compassion.

Will is doing ok at the moment. Maintenance CHEMO is going ok - but of course then I worry it's not strong enough and not doing what we need it to do. Drs wanted to add a further stronger chemo in there but kidney failure on an earlier cycle means they can't risk it. We are at the stage where they have done all the intensive chemo they can, all the brain surgery they can, all the intense radiotherapy they can. We are only left with a years maintenance chemo. This has got to work as we have no other options. Last MRI scan showed tumor had changed shape, got slightly bigger and there had been a bleed into the space left by the bits of tumor they could take out. Fuck how do I live with this knowledge? The Drs hope (they can't be sure) that it is radiotherapy effects which would be good, rather than tumor growing. Another scan in October. The uncertainty of it all is horrendous.

My DS has missed a year of school. He is desperate to enter the 6th form with his peers in September so this week has bedn a week of meetings at his school to see how it can work. His current (maybe permanent) disabilities make this tricky (fucking understatement there). The school are being exceptionally helpful but I fear they may turn around and say it is unsafe for him and others. It was heartbreaking (for me) to spend time with his healthy, normal friends and watch them run all over the place. I wept buckets when we came back but nobody seemed to understand why I was upset?

I feel I have to battle for everything. I am not sure if I am allowed to ask this but has anyone heard of a rule that says the NHS can't provide physio for anyone with a grade 4 brain tumor? I have been told this, been told by others I have a case to put in a formal complaint but I don't know if I have the energy to take on this fight too?

My son seems to find his battle much easier than I do - I'm not sure if that is because I am his mother, has he just handed all his worries to me? Do I know, whereas he doesn't, how much he is missing? Is he the bravest person I know or is he hiding his worries from me? He is 16 by the way, should be that lively age of finding your independence, finding young love, playing hard at life. Aaaarrrrgggghhh.

It's just so not fair and I am so fucking mad for all our children at the unfairness, the horrendousness of it all. I spend most of my time either wanting to sleep, cry or scream!

Anyway morning life calls, alarm clock ringing for my other son who is entitled to a normal life (Christ how this affects siblings too Sad).

Wishing us all gentle days today. Love to each and everyone xxx

Sorry if that was a huge ramble.

minmooch · 13/07/2012 07:17

Oh and meant to say Kinky great news bone marrow not needed xxxx

FarloRigel · 13/07/2012 13:14

Thanks Kinky. I really am so pleased you didn't need that BM for your DD.

Thanks to you too minmooch, poor little DD especially is grieving for her partner in crime, they used to shriek with laughter stealing a couple of big feeding syringes and filling them with water to go soak the nurses with. We all thought the world of her. It's something we all go through, I know, tragically, losing our kids' wee pals, but it is so damn close to the bone and you do get so attached to the kids you live with on the ward for months, especially when they are that special.

Massive hugs to you minmooch I am so sorry for everything you are going through. Your DS sounds absolutely bloody amazing and I am keeping everything metaphorically crossed that the scans in September show good news and that he never looks back and can concentrate on the bright future he so deserves.

Much love to you all Thanks

KinkyDorito · 13/07/2012 15:55

minmooch I think a ramble here is needed: get it out!! I'm so sorry you are having to go through these things Sad. I hope there is retribution for people like your DH. How unbelievably callous to abandon a person who you purport to love at such a time. There are no words. I wish we could make them wear a badge so nobody else gives them the time of day ever again; 'weak, spineless, ducks out in a crisis'. I really hope you have some support around you.

I totally understand how you felt seeing the peers of your DS. I teach DD's! I teach two classes of students she knew really well, several of whom bullied her when she was at school (before cancer). I have had to learn to be very detached, but I can completely sympathise with you finding that incredibly emotional. It brings home what they are missing. I sometimes look at them and think they don't know how lucky they are, but then children aren't supposed to have to do that. It's just a total bastard that our kids do.

Your post beautifully conveys exactly how I feel: the tiredness, the overwhelmedness, the horror of what we are forced to know and see. I am so sorry to hear that his tumour has got bigger. I don't know what you do with that, except find somewhere to go and scream or hit things. Make sure you try and let it out out somewhere before it makes you poorly too. If you ever want to PM me, or have a chat, just let me know. I am sending you much love. Smile

Wave at Farlo Grin.

KinkyDorito · 17/07/2012 16:44

Always here... lurking... Grin

FarloRigel · 18/07/2012 11:57

Passes Kinky Brew and Biscuit to keep her going as she lurks and sends everyone good wishes for their amazing, brave children.

Queenmarigold · 18/07/2012 15:08

minmooch - why on earth should the NHS not provide physio? That can't be right, certainly we were grade 3 and not told anything of the sort. However physio in the community where we live (Midlands) is appalling - they are constantly off sick and just turned up and told me I was doing all the right things. FFS. After I've nursed my kid night and day for over a year, researched and liaised with onoclogists, pharmacists, and brain surgeons, I then have to deliver f**kg physio on on top of everything else. Un-fkg-believable. And then they go on strike about their pensions...Angry

Yes, absolutely you must fight for it. Yes it is unbelievably hard to find the energy, but ignore your rubbish H for a while - he doesn't need you. Your son does, and he needs the physio care.

The one thing I learnt during our nightmare journey is that the ONLY person who truly cares enough is you. You are their voice, their energy, their passion for life at a time when they can't do it for themselves. They will do it for us, one day when we are old and need them. You can, and will find the energy.

KinkyDorito · 18/07/2012 18:29

Ta Farlo Grin

Queen so true about being the only person who cares enough. I hope everything is okay with you. Smile

minmooch · 19/07/2012 22:52

Kinky - thank you for your words xxx

Queen - oh I will fight for his physio it's the formal complaint I don't know if I have the energy for. I have kicked up such a fuss NHS physios are seeing him at the moment. I am not convinced they will continue so I am paying a private one too.

DS had a terrible day today. He has been so brave, stoical, smiled all the way through all the shit but today he fell apart. He spent hours sobbing his heart out, asking why this happened to him, he hates being in the wheelchair, hates taking his medicines, hates being sick, hates not going to school, feels he is useles. All I could do was hold him tight, sob with him, tell him how unfair it all is. My heart is breaking for him Sad. It is just so unfair. I can't even give him a timescale for when he will be better.

Yesterday he said to me that when he is older and has kids of his own how he would build a huge sandpit for them and hide things in it for them to find. I don't think he realuses that his fertility has probably gone - I know there ate other ways of having children but it's so unfair that he will have to fight that as well.

We are off to Dorset tomorrow for a few days. Hoping we get to have a few days sun if only so we can sit out and have a glass of wine - that is my mum and I - kids will be on something softer.

You are right Queen we are their passion for life, their everything.

Love and strength all round xxx

Queenmarigold · 20/07/2012 15:57

Good for you, girl. Good for you. Keep doing it, and when you can't do it, take baby steps and don't look further ahead than the next 30 seconds. We all know what that's like.

It honestly gets better when chemo finishes. It takes about a year - but when they are off it all of a sudden they have so much energy you can't keep up!

And for fertility - I'm planning to get my eggs saved. I will fight the NHS to pay for that one as well, they did this, they don't research it enough so they can pay.