Scaniexty

[banabak]

Anyone else got a scan coming up in the next month? I could do with a place to chat away the nerves with people who get it. Lead up is always tough, but there's headaches going on atm which are making it even tougher.

Sometimes/all the time, I really do hate this way of life.

I get it @banabak . Feel free to chat.

DS just had a (scheduled) MRI 2 weeks ago. There's always an underlying fear: 'will they find anything / will it be worse this time'?

His MRI was fine, but I was very afraid this week, as he started waking in pain every night with headaches and is actually in hospital at the moment. Thank god the neurosurgeon came down last night and confirmed she couldn't see any issues on his CT scan or x-ray. (It's sinusitis and potentially another type of infection on top, but so far the cultures haven't grown anything, so they're not sure.)

I'm sorry to hear that your ds is in hospital. Nighttime headaches terrify me these days - I'm so glad the team are taking it seriously. Such a relief that the CT was okay. How is he today? How are you doing? Were there any more headaches last night?

I'm really struggling to manage and contain my worries. Worrying is exhausting and it's exhausting trying to hide the fear/preoccupation at home and at work but despite all that I'm on high alert at night and can't sleep. This is a tough motherhood card we've been given (and goes without saying, an even tougher hand dealt to our kids).

I am so with you both on the headaches. Feeling sick or even not feeling hungry are bad here too as those were the first symptoms. But we have had a scan with headaches that was ok.
@C152 I'm really sorry about the sinusitis and more hospital time, that sounds miserable.i hope antibiotics kick in soon and staff are being kind and supportive.
@banabak I find very occasionally strategies to manage scanxiety work but more often I go from o-60 and it's too bloody late to try anything. I hate it more and more and start dreading it about a month before. If I hear a noise even slightly like the MRI noises I feel sick. Whilst waiting for results I can't bear it if the phone rings.

i hope the radiographers faces are smiley for you and you get the results quicker than ever.

My son has just had his last round of chemo before starting maintenance. He has his MRI booked for next week to see where we are at. I feel sick with worry.

Hope the scan results come quickly @Downtoyou and the chemo is working. Is it an 18 month chemo protocol? I'm still holding on day to day at the moment, counting down the weeks til the next scan. I'm normally okay these days until results week but all this talk of headaches is freaking me out. I'm back to keeping a diary and reporting symptoms.

Hello @banabak and @Castlereagh

Things have taken a shit turn at this end. So at first there was the bit where I tell myself not to over-react to night-time headaches: 'well this can't be serious; he's only just had an MRI and that showed no change'. But of course it's absolutely terrifying, because that's how the brain tumour manifested itself in him.

Then there's the fact they continue for 5 days and over the course of those days, he loses interest in eating (frankly, one of his favourite past times) and just wants to lie on the sofa staring into space...he doesn't want to do anything, doesn't want me to read to him, doesn't care if the tv is on, he just lies there because he says he is so tired. Eventually my ex and I admit this is horrendously worrying and, much as all three of us hate all hospitals, decide that's the best course of action.

Step 2 was the 'fuck me, has the cancer come back already?! So quickly? But we need MORE TIME!!!!' Then when it seemed he 'just' had sinasitus, I was massively relieved. Only to be slightly more worried that none of the Drs believed me when i said I thought he also had chicken pox, as he started coming up in spots the day he was admitted to hospital. Not many, but definitely chicken pox spots. They tell me (in marginally politer terms) that I don't know what I'm talking about, and the spots are just spots. A few days pass and he gets worse and, low and behold, swabs show he has chicken pox. That sent them into a massive panic that he has encephalitis. (Which the consultant insists on mispronouncing...I know it's pedantic, but I just want to smack him and say, really? Can't you get the name of the fucking disease right?!)

So, today poor DS had an MRI, lumbar puncture and a central line put in. No resuls back yet from the lumbar puncture, and they don't expect any for several days. DS is very upset to have a line back in and depressed to be in hospital for what looks like several weeks.

@Castlereagh I too go from 0 to 60 miles/hr in the blink of an eye. In quieter moments I try to think of better ways to manage this, but they just don't translate to reality. I think I'm actually always operating in fight/flight mode and just hiding it from DS in order to keep going, so when things stop being 'the new normal', the mask drops.

I too rarely sleep @banabak . Is it worry, is it peri-menopause, is it conditioning from what was effectively a year in hospital and the constant waking every 15mins to do obs and turn the beeping machines off and comfort a terrified child in awful pain? I don't have an answer. I hope you're doing as ok as you can.

It's ok to keep posting to say you're worried, if it helps. There aren't many people that would get it in real life. Friends empathise, and I do have some good ones who check in, but it's just not possible to get it unless you've lived it.

@Downtoyou That first scan after the end of first stage treatment is very worrying. I hope the results are ok. X

@C152 absolutely gutted to hear what's going on for you and your ds right now. I don't even know what to say about the fact the doctors didn't listen to you about the chicken pox. What's another blood test when so many bloods are taken? Are you on the ward or in PICU? My dc had encephalopathy during treatment (with a long name and another syndrome to add to the list of many).

We're on our usual ward, thank goodness. Both Ex and I were worried they would shove us on the horror show that is Lion ward because DS is 6 months post chemo, so technically not a high risk patient anymore. CNS has even offered to move DS to a bigger room with its own bathroom when one is available - small pleasures, hey?!

Oh my gosh @C152 not another central line. What a nightmare the whole situation has been. I really hope it's not encephalitis, their poor little brains have had enough already.
@banabak sleep is horrendous around scan time isn't it. I now don't try to force myself to sleep and if I do sleep and wake up, I just go downstairs or read a really crap thriller, the type of one where there are 7 old friends on a holiday island or whatever! I have tried everything else,magnesium, nytol, lavender oil and no success.
@Downtoyou I'm so sorry you are going through all this too, I think that first scan feels worse cos all you've had every time is terrible news so kind of primed to expect it.

I've been trying to not stress about the lack of night time sleep, but I can now add nightmares to the mix!! Utterly ridiculous reaction given the real stress you're going through right now @C152 and the very real stress we've been through in the past. I think like you say though the mix of perimenopause symptoms here adds a whole new dynamic and one that I wasn't navigating a few years ago. I'm going to discuss HRT with my GP and maybe an increase in antidepressants. The low level headaches are continuing and I'm on angst alert, whilst trying not to show or be on angst alert, which is exhausting me as well. The only thing that can reassure me is a scan result.

Thinking of you this morning @C152 and hoping things are calmer there.

Happy Mother's Day to you incredible women

Oh no @banabak . It's dreadful when you've got nightmares added to the mix. Don't think for a minute it's a ridiculous reaction. It's your brain trying to make sense of things and live out different scenarios so it knows how to operate if one of them happens in reality. That's the way I think of it, anyway.

Have the doctors suggested what the headaches may be caused by? We understandably automatically jump to the worst conclusion, but it may be something like dehydration, tiredness, sinus issues, or a combination. Certain medications can also cause headaches/migraines, especially in children. Or it could be stress. Humans are really very sensitive to the slightest change in environment. I really hope it's something simple like that and that the headaches stop soon.

This probably won't be helpful, but I have always felt, and relatively recent studies have indicated, that humans can only take so much. A bit of a challenge or a few massive challenges over the course of a lifetime are a good thing in terms of teaching us and pushing us forward, but multiple massive challenges and struggles over a long period of time don't actually make us stronger, they make us weaker. The reality is we'll all just keep going because we have no choice, but I wouldn't be surprised if things feel tougher than they did during the early days of diagnosis and suviving the year(s) of treatment etc. Maybe that's just a lifetime's worth of inner strength depleted, so we just don't have the reserves to cope as well anymore. I don't think I explained that well, but I hope you understand what I mean. Don't judge yourself too harshly and do whatever you have to in order to get through this.

When is the next scan? I hope it's soon and they can at least give you a high level "everything's fine" result within a couple of days.

Happy Mother's Day to you and all the other women on here. X

That's so interesting about multiple challenges not making you stronger. Do you relate to that too? Like all of us, I've had a fair few challenges to manage in life but this is another level of stress and one that I don't manage well. I was reading with interest the thread today on AIBU about how to handle stress and it made me think about what to incorporate into my life to make me better able to tolerate the worry, which will hopefully mean I'm a better mum. I'm going to make a list and see what I can do to self soothe. What do you do @C152 to manage all the stress you navigate?

I think the fact that there's no cure, no hope of resection, no hope of this being in the past, but always something with us that I find so difficult to manage. I want to do all the things with my dc, but at the same time I'm terrified of being away from a hospital. I don't know what's causing the headaches, and we've not spoken to a doctor. I've kept the nurses up to date and I've asked for the scan to be brought forward as it's still some weeks away. I'm not sure if there's enough give in the NHS right now to accommodate that, and I hate that unless it gets to an urgent shunt blockage for any action. At the same time, I don't want to complain because my dc wouldn't be here now without the neurosurgeons and oncologist. Gah.

How are you doing @banabak ?

I wish I could give a good answer re stress management, but I don't have any. I think a lot of what works/doesn't work is to do with the type of person one is and part of it is the level and length of the stressful situation.

For me, it's the medical professionals that cause the stress. The actual brain tumour and cancer is a constant low level stress in the back of my mind; but that bit's livable because I'm now used to it. Being away from hospitals is our safest place of all. I recognise others have had different experiences, so feel differently, but no one in the medical world is our saviour. They fail us at every turn. Not just because medicine itself is still so limited, but the people they are and the way they behave makes a dreadful sitation 10000 times worse than it need be. Having zero contact - and zero threat of contact - with any of them is where my son and I both feel best.

Wild swimming is the only thing I have found that really lifts my spirits and that feeling will last for a few hours, unless something happens to interrupt it. But I hate the cold, so that option's only available 1 day a week (when I'm not looking after DS) in summer.

There was an article in the Metro or the Guardian recently about how casual interactions actually do more for us than we realise e.g. a simple chat with the guy in the newspaper shop, a greeting from the lady in the coffee shop. I have found that does work in terms of low level mood improvement. It is nice to have people that recognise you enough to have a casual chat with, without needing to go into your whole life story.

My son's MRI was delayed until last week as he was admitted to hospital with an infection and was too poorly to attend.

I've had the results this morning and have been told there is something glowing on one of the images which they think is unusual. He is booked in for a lumbar puncture tomorrow morning and I have been told they are going to ask for the results the same day. I am so worried at the speed of this, it means they are very worried.

My son has developed trembling hands, headaches and sickness which he was admitted for at the weekend and they said he was dehydrated and gave fluids.

Worried sick

@C152 I didn't reply to your post! I was in a really bad place when I started the thread and it got to the point where even posting was feeling too much. But I recognise so much of what you said.

@Downtoyou I'm so sorry to hear that there's glowing on the scan. I'll be thinking of you and your son today. Did you manage to sleep at all last night? There's nothing like this horrendous worry.

@downtoyou I am so sorry to hear this. Have they given you any indication of what it could be? I am really hoping it is to do with the infection and not anything else, but I know anything on the MRI is terrifying. I know an oncology friends son had something on his review MRI which turned out to be pseudoprogression, something to do with the treatment irritating the tumour so it looked like it was growing but wasn't. However it it took so long to get the answers, all the mum's hair started to fall out with the stress. I really don't know how we are all keeping going. I hope you get the answers you need quickly and I hope your hospital team are supportive.

@banabak @Castlereagh It's really bad news unfortunately. My son's cancer has spread into the fluid around his brain and into his spinal cord and is now stage 4. He will be receiving relapse chemo as part of his clinical trial, but we have been told that he will most likely pass away within the next 12 months. I just don't have the words to articulate how I feel at the moment

Oh @Downtoyou this disease is absolutely horrific and brutal and I'm so so sorry.

@Downtoyou am so sad to read this. You mentioned maintenance in a previous
post- is it leukaemia? If it will help do share the history here. I am the OP on the terminal thread- very happy to chat if it will help when you are ready.
I know everyone is different but we were told 12 months in December 22 and still here.
I hate this disease.

@banabak @C152 I missed all these posts, but on ‘the ability to cope with successive stress’, in my previous life I worked at a very stressful place, where expectations were super high. They were also quite progressive, and staff had ‘resilience’ training to enable them to cope with the workload. So building in micro breaks, recognising stress early to react and deal with it, acknowledging when it was too much, looking for signs in colleagues etc. Partly staff welfare focussed and commendable, partly covering their backs In case they got sued for inflicting depression/suicide in staff.
All well and good but I realise there is no manager to spot the signs now, the micro breaks and treats etc are not possible with a child in hospital and you cannot just walk away from hospital/ your child like you can with an office/ your colleagues.
long but in summary yes the constant waves of this don’t make you stronger as there is no recovery.
@banabak I hope you got more ADs and @C152 what does the encephalitis mean for your son?

@Downtoyou I am so sorry. What awful news.

I hope the Drs are wrong about how much time your son has left. I know that not only are all cancers different, but all children - even those with the same type of cancer - react differently, but as @ScaredOncologyMum suggests, timelines are all very 'finger in the air'. Our initial diagnosis was stage 4, with spread throughout the brain and spinal fluid. The neurosurgeon showed us an image and said, 'the white bits are cancer'...and there was so much white in his brain I didn't know how he was actually still functioning at all. Then we got worse news, that in the two months waiting for radiotherapy, it had spread even more. Then each scan throughout treatment showed no change (no improvement but no spread). Until the last one, which all of a sudden showed huge improvement. I don't know how that's possible or what it means, if anything, for the future; but I guess it just shows everything about this life we all lead is uncertain. I sincerely hope things improve that way for your DS.

@ScaredOncologyMum he has Alveolar Rhabdomyosarcoma, a soft tissue cancer that was diayin August after hay fever like symptoms and a swelling across his nose. The tumour was about 6cm x 4 and was behind his nose, resting on his brain and there was lymph nodes involvement. He had 9 cycles of very high risk chemo as well as proton beam therapy and his MRI was routine before moving on to the maintenance chemo. Unfortunately he has now skipped this and has moved onto the relapse part of his clinical trial.

@C152 I am.really interested in your post and it has given me some hope. My son's consultant doesn't know how he hasn't got worse symptoms.other than mild headaches and hand trembles. She was teary when she gave the results. The scan showed pockets of glowy bits and the lumber puncture came back full of cancer cells. We are up early for a full body PET scan and some other tests today and more chemo will.start tomorrow to try and slow down the spread.

@Downtoyou I have been wondering how both your and @banabak are doing. (No need to reply if it adds to the anxiety of the situation, just wanted to let you both know I'm wishing you well.)

@Downtoyou How did the tests go and did your DS start more chemo? I hope his symptoms are still manageable and chemo hasn't exacerbated them.

Hi @C152 scan results will be next week. Just keeping on hanging on. Thankfully the headaches seem to have stopped though. How are you doing?