DS has brain tumour - update

[Clarinet60]

We went to Alder Hey yesterday and they were very efficient in terms of ordering a second scan for this Friday, etc, but we are back to square one in terms of whether/when a biopsy will be done, because the person we saw wants to start all over again and let his own team decide. This is worrying, because the oncologist at Manchester said ds needs a biopsy - I just hope the new team agrees. Also, we were wrapped over the knuckles for changing teams because they are all good friends together. I lost a lot of sleep last night fuming about the injustice of that, because the Manchester team lost letters, ignored requests for blood test results and generally had a 'some time any time' attitude that didn't put ds's welfare first, etc etc. Mustn't rant, this is supposed to be an update! So, scan on Friday (to see if it's grown) after that, who knows?

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Hey Droile, just checking in babes. You've been on my mind and just wanted to send you my love, TC xx

Droile, just wanted to let you know that we're thinking of you all and praying for you. Followed your first thread but haven't been around much as ny first baby arrived 6 weeks ago and things have been hectic. Hope you've had your call from the Macmillian folk by now and that it's been helpful. Take care, lol x

hope you are doing OK droile.

If it is half-term for ds1 I hope you are enjoying the warm autumn sunshine we have in London today. Lots of love XXX

droile thinking of you and your family
xxx

Thanks everyone. Twiga, congratulations!
Feeling better, still waiting for the Macmillan call, always only answermachine when I ring.

My friend was indeed asking for a word with mummy. She ended up having to put the phone down and ringing back later. Hope he hasn't seen the Macmillan nurse off in the same way, but I'm sure it was just a one-off.

Thanks for thinking of us. One or two more friends have been arriving this week.

Glad you have been having some company this week Droile - and am sure the Macmillan nurse is woman enough not to have been deterred by a "helpful" child message-screener! I do hope she calls you soon. If there are temporary staffing problems for example, they ought to be honest and make that clear on the answerphone message I think.

Droile - pleased that you have had some more vistors this week.

Still thinking of you here too.......

droile - I haven't posted but have been thinking of you a lot (Jimjams with a name change). So pleased your friends are starting to reappear.

droile- is there a friend you could ask to keep ringing the macmillan line for you (to tell them you've been trying). I think constantly trying to get hold of someone is exhausting.

Could not agree more bakabat - I find myself getting disproportionately overwrought when trying to reach the GP in a hurry and the phone is constantly engaged. It's a hassle you don't need right now Droile, one of us would be pleased to help.

Yes. Droile, I'm really sorry but I'm not working this afternoon - but I'm sure someone else could ring for you.

morning droile
just popping in for a chat to see how you are all doing.
I hope you are getting to meet up with some friends, that the hv will be in touch and the macmillan nurse soon gets back to you. It can be so frustrating waiting for return phone calls when you are leaving messages in the 'ether'.
How is ds doing in himself?
You are often in my thoughts

Just nipping in to see if there was an up-date and let you know that we're still thinking of you, lol x

Sorry to have missed messages, but I had wall-to-wall visitors since Wednesday. First no-one comes, then everyone all at once!

ds went to see the neurologist on Wed about his meds. They will keep him on same 3 drugs till after Christmas, then slowly decrease. Because I couldn't tell her much about where exactly the tumour was, etc etc, she's taken it upon herself to ring the oncologist and tell him we didn't absorb enough information (due to too many observers in room, etc) and could he please phone me and explain again. So now I'm waiting for 2 phone calls. Ooo-er.

ds is still fantastic in himself. I'm still barmy.
Things are pretty calm though.

Marina and motherinferior, I'll see what tomorrow brings, then get you to phone for me if nothing happens, if you wouldn't mind. Thanks.
jimjams, nice to hear from you, I'd never have recognised you! Is it a halloween name? I've fallen behind with all these name changes.

Hi Droile.
I hope the visits helped (it isn't something you can take for granted with visits, is it?!).

The neurologists untervention sounds a good one, it must have b*Y impossible to take in what you were hearing in your meeting with the ocologist, due to the shock, the complexity - and all those damn people. Horrible. It might help to go over things after a bit of absorbtion time. I hope so, anyway.

Excellent to hear that DS is so well 'in himself'.

How is your being 'barmy' showing itself? Are you finding that you fell withdrawn, or irritable, or panicked? You must spend a lot of time 'dwelling'? How is DH?

Thinking of you all - and hoping the DS's are enjoying the haollowen / bonfire night excitement this week.

XXXXX

love and strengh to you and your family

Blu, the main manifestation of my barminess is unprintable, but otherwise I'm irritable and alternatively withdrawn and giggly, also can't be bothered with anything. DH keeps himself to himself.

I haven't posted but follow this thread and admire your courage Droile. You live very near where I was born and would love to return to.
I don't know if it is helpful to know of others who have travelled a similar road, but my nieghbours ds had a benign tumour about 18 months ago. Whilst in hospital for treatment they met a toddler from our village with a brain tumour which was thought to be inoperable. That child now attends the same nursery as my ds and has made a full recovery after the bleakest prognosis. I hope so much that your ds has a similar outcome.

Sounds bloody, unprintatbly, tough, Droile.

Droile, glad to hear that you've been having some company.

The neurologist sounds very helpful.It might be worth writing down any questions you have (to do with the last meeting and any others that may have occured to you since then) so that you can ask the oncologist when he phones.

You are all frequently in my thoughts.

Thanks all.
I'm intrigued as to where you were born, Princesssmartypants - CAT me with the town/village if you like and come round to see us if you make it up here. The story about that toddler sounds v. hopeful, thanks.
I've put some questions down by the phone, Polly. You should have seen me diving for it all day Friday, heart thumping, then cursing when it was only about 5 cold-callers. I'm having to be carefully bland about the questions, as when we met, there were only certain ones they were prepared to answer.

Oh Droile, that sounds so stressful, waiting for the phone to ring like that. I am slightly boggling at the notion that it was your responsibility to relay the information to the neurologist to be honest, but at least they're getting it sorted. I hope they ring soon and get it over with.
xxx

Droile - hiya.

Have you asked to be copied in on the correspondence between the consultants/GP etc? I've alawys found them a useful source of info both to clarify points that went over your head and to flag up questions for next time.

Barminess sounds like a pretty normal reaction to all this. Look after each other.