recent brain tumour op

[Siestatime]

I had a metastatic melanoma from brain removed here in Spain on 22nd august. Lost movement in right hand side body totally and had severe problems with fecalomas. Got discharged from hospital last weds night and had to manually fecal impact after taking movicol for 2 days. Since the improvements with fecal impaction I am able to move round home with stroller. Still wearing nappies tho and suffering from epilepsy and very different to how I was. On Friday I go to see oncologist and already worrying about how going to get downstairs,manoeuvre hospital etc and cope with toilet needs in large busy hospital 😟. Also worried coz been told I will now have radiotherapy on brain and this will make me feel nauseous tired hair loss and will set back my rehabilitation. The lack of information is anxiety causing and as as usual I have to self advocate and prepare questions so to understand what’s next. Any advice or help you can give will be very much appreciated 😊

[Maddie_TBTC Administrator]

Hi, I am sorry to hear about your diagnosis and the difficulties you’ve had following your discharge from hospital. How have things been?

In terms about information, we have a Step by Step interactive guide which walks you through what to expect at each stage after a diagnosis. You'll find questions to ask your healthcare team, suggested actions for you to take and useful resources for you to explore. It is important to note that this information is based on the UK health systems. You can read this here: thebraintumourcharity.org/b...

We have some information about radiotherapy on our website that might be helpful to have a read through: thebraintumourcharity.org/b...

As we are a UK based organisation, our knowledge of the health and welfare systems in Spain is limited, so you might also want to try and contact ASATE. ASATE are an organisation in Spain who provide support to those affected by a brain tumour. Here is their website - thebraintumourcharity.org/l...

I hope this is helpful. Please do not hesitate to reach out to the group anytime you have any questions or just want someone to talk to.

Warmest wishes, the Support Team

[Siestatime in reply to Maddie_TBTC]

Thank you so so much for your detailed reply. Very very kind and so helpful. Since posting I have greatly improved and can move around well now and my appointment with oncology went well. I start radiotherapy treatment on Monday so your info is perfect timing 👏👏. Thank you also for the link to ASATE I so very much appreciate you taking the time to reply this way. I am very glad I found this group and appreciate you being there 💖

Best wishes to you all

Jan

[Maddie_TBTC Administrator in reply to Siestatime]

That is great to hear that you have improved and you're appointment went well! Please do reach out if you ever need to talk, warmest wishes, the Support Team