Recurrence

You do not say what cancer you have. If you have the right markers you may want to look at lomustine, even though I suppose your oncologist has already considered it. There are studies with various chemos, virtualtrials.org. You will not be sleeping because you are anxious. I have also spent many a sleepless night. I did not have to look after young children the next morning though. Maybe look for some help, from family and friends, to allow you to rest during the day, if at all possible. You need support basically to free you from all chores so you can spend the day as you wish. But with young children this is easier said than done.

Hi BarkingBT239,

First off, well come - (to a club that nobody whats to join). We really do know what you are going through and will try to support you as best we can. Sometimes just doing what you have done, writing on here can help - you are right, things aren't fair, but you are getting through this right now. Keep it up.

I'm not very good at writing things down about all this (dyslexia as part of my tumour!) but other people on here are - I bet Wee Me will be on here soon to give you more practical information.

Mine started off being low graded and eventually had to have an op, radio the chemo (read my story if you are really bored). Like you have MRI's but now down to just once a year. I'm told I have an anaplastic astrocytoma grade 3, but that's back in 2010 so they have got that wrong! They can get it wrong with yours.

Chemo is not much fun is it? Feel bad, Just getting better after a week or so. Then whack, bad again. After the six months I reckon they'll leave it for a little while to see if there is an improvement. What tumour have you got?

I don't have any children so it is not a problem from that port of view for me but you keep strong for your children.  Your husband must be a help but he must be feeling it too. There are forums on here which may help him.

Say what you want on here; that's partly what it is for.

Stay strong,

Richard

Hi BarkingBT239

a warm welcome to the online community. Sorry to hear that things have taken a scary turn for you but breathe....let's take this new trail on your journey one step at a time.

You haven't mentioned the type of tumour you were originally diagnosed with or if the regrowth is the same type or something different. Either way, you have a treatment plan laid out so trust that your medical team are guiding you here in your best interests. 

I supported my late husband throughout the 3 years of his stage 4 brain tumour journey (glioblastoma) so our journey was an entirely different path to yours. What I learned quickly though was that not knowing all the facts was a thousand times harder than knowing what lay before us. It's only human to be anxious here so please don't be too hard on your wee self. Can I suggest that you write down all the questions, fears and worries that are flying through your mind? Use these as the script at your next appointment. They'll help keep you on track and make sure that you don't forget to ask about something that is important to you. There's no such thing as a silly question.

Everyone copes in different ways and there really is no right or wrong way to cope, It's the strongest and most resilient among us though who show our emotions. By showing them you are processing them and that's far healthier than keeping things bottled up. Communication between you and your husband is key here. G shut me out at every turn throughout most of his journey and it made things tougher for both of us. His key coping mechanism apart from running was denial. Perhaps not the most healthy one but it kept him going and who was I to argue with it.

This is a safe and supportive space and as you've already seen there's always someone about to listen who gets it. someone to hold your hand and to offer a virtual hug when its needed. You're not alone. We've got you.

It’s always good to talk so please remember that you can also call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.

For now though I'm sending you a huge virtual hug and lots of strength. Remember...breathe and take this one step at a time.  We're right there with you.

love n hugs

Wee Me xxx

you were right...like a bad penny I keep turning up

hope you and your wife are doing ok

love n hugs

Wee Me xx

We are very well, thanks. My latest scan shows no change, which is good. (the bloody thing is still there but at least it's quiet). My better half looks after me very well and I just keep taking the pills.

Cheers