Children with cancer

[KinkyDoritoWithFairyLightsOn]

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.

The life of a mother of a child with cancer is heartbreaking, every single second of every day, there is no let up and no timescale.

Absolutely. And yet, because we do not walk around weeping and asking why, because we just get on with it, people frequently forget what we are going through. I could do with your words printing on a t-shirt to remind some people that we do well to just get out of bed on a morning, let alone the countless other things still expected of us.

I'm having a big sigh weekend. So much housework, so much work work. I really just want a couple of days to myself, in a tidy house with nothing to worry about.

Fat chance.

At least DD is okay, although they finally started taking blood off her to try to bring down her iron levels. LP in 10 days, so it is a super big chemo month, right as infections seem to become more likely. I just hope she manages to keep her counts up through winter. Really don't want to end up signed off like last year - I don't think my nerves could take the pressure.

Onwards. Ever onwards. When this is all over, we should all meet up and get very, very drunk.

20 months down. 7 to go.

In fact, it's 21.

Kinky - my counsellor said that the only way to get through this is to enjoy any moment of normality we can. Our lives are no longer normal and we need to remind ourselves occasionally that there was a 'normal'.

I went to a party last night, didn't enjoy it, too tired and too noisy (I feel like I have a touch of agoraphobia these days) and had to listen to a woman complain about her frozen shoulder and the successful outcome of her painful op - I found myself wanting to punch her and tell her she had no idea how lucky she was. Then another woman kept wanting to ask me about Will, kept on telling me she couldn't imagine how terrible my life is - yeah I know - but she kept on saying it and I wanted to punch her too! I used to love dancing but felt sad that on the dancefloor last night I felt that my body had forgotten how to dance - does that sound ridiculous?

Kinky I hope your daughter's counts stay high. It's such a worry. Will is back at school, part time. I spend most days taking him to registration (if it's an early class)taking him to his classroom and them waiting in the car to collect him after a class. He is only doing 2 A levels now to hopefully give him a chance of coping. He is horribly tired and just picked up a cold. It now amazes me how others can dismiss a cold but it has sent me into a panic for him. He's at his Dad's and I want to know that he is taking his temperature (but can't nag him!).

I went to my other son's school for a parents evening. Saw a lady I hadn't seen since Will had been diagnosed. She came and gave me a hug but mid- hug told me she had just had shingles - I nearly through her across the room and was furious she had hugged me (she was over shingles but that did not matter to me).

I am rambling now and need to get started with the day ........

Oh and I wanted to punch my mother too yesterday! We were talking about Will's MRI scan due in a couple of weeks. I am terrified of it, the results, how we will cope if they are bad, what the drs will say to Will etc. She came out with a Mothers love is very powerful and has the ability to change outcomes. I told her it didnt otherwise no Mother would lose a child to this, or any other disease. I said saying things like that means that if Will does die from this then I haven't loved him enough. A Mothers love can only affect how your child copes with the fight. As much as I would like to believe that the strength of my love could destroy his tumour I dont believe medically it can.

Did I read my mother's words wrong?

Your mum doesn't know what to say to you. Nobody does as they cannot possibly know unless they walk in your shoes. She is scared too, but dare not say it as she will be being strong for you - I think she is probably hoping her love will change it for you both, but without telling you that. It is terrifying, lonely path we tread, and I can completely relate to you not feeling you can dance anymore. Hopefully, as time passes we will all find a bit more joy in the world again. But that is very difficult to do whilst you feel so cheated by it, if that makes sense?

You are more than welcome to vent to me whenever you need to.

I am feeling very weepy today. I don't normally cry, but I'm under a bit of pressure at the mo and I feel quite sorry for myself. Listened to this, whilst I was peeling veg for lunch, and it has ruined me!! I am in a right state now, I think it makes me think of all of those we have lost this year and their poor parents.

A fitting close to childhood cancer awareness month I think.

Sending much love to you and your DS, minmooch. We keep on keeping on as there is nothing else we can do.

I hope that I didn't sound like I was dismissing you being cross about the 'enough mother's love' thing - I hate things like that, as I hate the whole 'fight' metaphor used for cancer. Because it does suggest that if they die, we haven't loved enough, or fought enough. But people cling to things like metaphors and cliche because they don't know what to say. It is so incredibly hard.

Hi, please can I join? I've been signposted here... My beautiful DS is 3. He was referred to hospital yesterday and, a CT scan later, it looks like there are 3? Tumours on his brain. Likely to be secondary from his abdomen, probably liver. He's having an ultrasound with DH right now. I don't know what to do with myself. I can't stop crying.

Trazzletoes, I read your other thread and although I don't often post here, I wanted to say how sorry I feel for you, at the start of this journey that none of us wanted to take.
The shock near the time of diagnosis is huge. Dh and I would each burst into sobbing tears for no apparent reason for weeks, probably months. Particularly if someone asked about Dd, or made some comment about her without knowing her diagnosis. It is a new and alien world of hospitals, doctors, nasty tests, medication with complicated names. Confusing, frightening, and for me and Dd, surrounded by children who were extremely poorly, as the children who were recovering were being treated as outpatients.
The ladies on this thread have lots of experience and help guide you through some of the treatments. My own Dd as 4 and 1/2 months of treatment remaining after nearly 2 years of treatment, but things look more positive now.
Lots of hugs for you and your beautiful Ds and sending my best wishes for a treatable and positive diagnosis. x

I am so, so sorry to hear that Trazzle. It is a huge and awful shock. I think Orange explains it very well. It is a rollercoaster of having to understand all of the medical things whilst dealing with your own emotions, and your child's. Take all the support that you can get - have counsellors, let friends come and talk to them, lean on your family. Pull close to those you love and let them look after you. You will all need it in the coming months. If other people can sort practical things, it lets you both focus on your DS. You can also get help through the charities, so don't be afraid to ask for it. Hospital will advise you of all of this. Do you have other children? I will be thinking of you all and I am around to talk whether on here or by PM. Sending love to all of you, and hoping that his scan went okay.

I am pleased that things are going well for you Orange.

Hi Trazzle I posted on your other thread. I am so sorry you have had to join us.

My son was diagnosed just under a year ago with a brain tumour. It was completely shocking and to some extent it still is.

One piece of advice given to me was to write a diary/log of what was going on. It meant I wrote down anything that was said to mr, so I didn't have to rember it, I could write down any questions that popped into my head so I remembered to ask nurse/consultant without the pressure of remembering questions. It also meant I could show notes/questions to anyone without having to verbalise the words. Any medication, bowel movement, anything was written down (by me or anyone else looking after him) so I had a complete record of what had been given/said/taken etc - it meant also anyone that came in to see my son had a complete record of what was going on. It also gave me something pro-active to do.

I wish you much love and strength and a quick diagnosis so they can start treatment.

I've just had a look at your other thread .

I think min had it right when she said that we are very good at giving advice for coping with hospitals, etc.

It is a dreadful shock. Be really kind to yourself, and cry as much as you need to. I promise you, you will get through this.

X post! Totally agree with the diary. It can be very pressured, trying to remember who said what.

Hi Trazzle, welcome to the thread. Feel free to lean on us at any time through this and don't hesitate to ask any questions about treatment your DS will be having, there's a lot of experience here. I hope you will get some better news soon and start being able to fight back against this.

Sorry for not being on the thread much, everyone. I have been thinking of you all, but DH just had surgery (brain tumour at the brainstem, nasty spot but looks benign) last Tuesday so I have been very busy. He's recovering well though!

Thank you all. He doesn't actually have a brain tumour. Well, he does. He has 2. But they are the secondary tumours. Primary one is on his adrenal glands. Waiting for more scans to identify whether it has spread further. Though these 3 are scary enough. In his brain, they are behind his eyes.

Dr is certain (without test results so far) that it is neuroblastoma. This apparently doesn't look good, but please, I don't want to hear about the odds of survival at the moment. I can't process it. Dr has said that by no means is it certain that it can be treated. We should find out around the weekend what the prognosis is (is that the right word?).

we are hoping and praying with every fibre that it can be treated so that my beautiful boy has a fighting chance.

I'm devastated. Hoping to get a bit of sleep tonight in my own bed.

Trazzles there is not much to say, except we are here to talk to/vent at, and I will be praying for you all too. Anything we can do, please let us know. Which hospital are you at?

Farlo I am pleased surgery went well for your DH.

Trazzle - We will all be hoping and praying with you that your beautiful boy has a fighting chance. You will be in shock for a long time, try and get some sleep whenever you can.

Farlo - I am so sorry to hear about your husband - on top of what you have already been through this seems so unbelievably cruel. I wish him well and wish you much strength.

Kinky - I have watched the link you posted and it too made me cry.

We have bought our Stand Up to Cancer t-shirts and wrist bands and will be wearing them on 19 October.

AFM (as for me) I too am feeling weepy. Scan coming up on 2 November and my son is having nightmares about it and the results. He wants to have the scan though. I want to put it off and put my head in the sand - don't want to have to deal with any bad news and can wait for good news. He wants to get it out of the way but what do we do if we get bad news? How will we get out of bed everyday? How will I tell my other son?

I am tired every day and yet my mother keeps asking me why I am so tired? Does she not get it? Lots of chocolate keeps finding its way to my mouth as a way of coping! Oh and wine! Also think I am getting scurvy from such a crap diet!

Keep on keeping on - that has stayed with me Kinky.

Love to all

Oh, min. It's so horrible for you. I put on loads of weight at the start - 3st. I am a comfort eater, and it was how I coped. You need to do whatever you have to just to get by. I can completely understand you not wanting the scan. You need to be gentle with yourself at the moment. I must admit, I am quite at your mum. She doesn't get it, does she? Spend time with people who make you feel better - you need to for your own mental health. And get some sleeping pills, and get some proper rest. It will not make you feel better in your mood, but it will help your body and it might help the tiredness. I know only too well the mental tiredness and the eating to cure it that this whole shitty ordeal brings - but some of it might be real tiredness if worry is breaking your sleep.

I didn't find ADs any help at all - the situation is still hideous - but sleeping pills could be useful?

Sending, as always, love to you and your DSs xx

LGI in Leeds Kinky. DH says that DS is currently having his MRI. Biopsies etc in the morning. We pretty much know it's neuroblastoma but fingers tightly crossed for the best possible result.

Putting in to see how you are all holding up.
Saw and posted on your other thread Trazzle, will be thinking of you on this horrible journey.
As for us we are now three and half years in and treatment as always continues, and we are due back to London in just over a week. His tired again and caught quite a few bugs the start of school has brought,hoping its not another resistance :(

You are at my hospital trazzles. Are you on children's oncology - it used to be 76, but is now 30 or 31, something like that? We have moved to the teenage ward which is across the corridor from where you possibly are, although daughter at home at the moment.

It is brilliant - they are brilliant. If you ever want to meet up for a chat, or some support, I will come and meet you. If you look on my profile, there is a pic of DD last year when we were back in for illness. (We were in A LOT). I will be there on Thurs 11th as DD is having a lumbar puncture for spinal chemo under a GA. We will be in from about 8.30.

Also, if you ever need anything bringing in, I can come down after work. Get yourself plenty of hand cream - the filtered air on the ward combined with all the hand gel breaks your skin up. I had really bad bleeding hands.

I now understand the SNACKS - every day, without fail. We were drowning in crackers, wotsits and packet biscuits!! Today, this afternoon, a lady should be round who does head massage and reflexology for parents. It sounds weird, but it can be very soothing.

The play workers in there are wonderful, and good to chat to as well. The social workers are also there to help you - ask to see one. They can help you apply for things, but also are an ear as you really could do with sitting down with someone and talking it all through. They work for Clic Sargent, and as far as I know we all get one who works with us for the whole of treatment.

If you need any tips, just ask - I spent months in and out with DD over past 21 months.

I'm going to work now, but I will check later.

Again, sending you love and thinking of you often xxx

Lisa keeping everything crossed for you. Hope it is okay x

Oh yes forgot about the hand thing. Seriously good idea.
Thanks kinky, hope dd does ok with the next appointment.

Kinky yes we are on ward 31. It would be nice to see you next week if you have a spare second.

Currently drowning I Wotsits as DS doesn't like them

Good luck for your DD's procedure.

I ate LOADS of wotsits . I'll be there on Thursday most of the day, so we should definitely meet up for Costa in Clarendon, or find somewhere to sit and have a chat.