We Talk Brain Tumours

Hi Debs,

I'm another "sprinkle".  I have an Oligo grade 2\3.  I am so frustrated about that \!!!!!  I started with a seizure in May 201, so surrendered my licence immediately (15 months ago now).

I am 'lucky' if you can call it that, I could only have 6 weeks RT to shrink it as it was too deep for surgery.I completed treatment on 2 DECEMBER last year.  I have 3 children under 12 and so the holidays have been a nightmare - not really being able to take them anywhere unless on the bus, which is awkward - we don't live in the country exactly, but we only have 1, yes ONE bus from here and have to go to Newcastle City centre first to get anywhere else.  I am desparate to get licence back but because of that \ it's been suggested "don't even bother re-applying until after the new year as no matter what we may write about your tumour, the DVLA will just see the 3 and say no" 

Looked around on here and someone else has said in a post somewhere that it's up to your cons. to declare you fit to drive.  I downloaded the medical form from the DVLA website and although it asks if you have any of the following, and brain tumour is on the list, it then directs you to a different section to give details.

Do you, or anyone else on this website, know of any case where someone has got their licence back before 2 years?  I want to be safe and not a danger to others on the road, but I feel fantastic and just want some normality back.  I went to see cons for routine appt Tues, but saw her REG.  told him my plight! about kids etc and his answer was "They've got legs, they can walk"  Not helpful thanks given where we live.

Anyhow, moan, moan, moan,

love and best to all comrades

Tasha

Sorry to welcome you aboard our train BUT the people on here are amazing and without them I don't know how I would have got through the last 11 months. Sadly, it looks as though my dad is reaching the end of his journey but I know I will still come on here "on the other side" for much needed support.

I have looked at your profile. It sounds as though you have a good family network around you and they will give you strength and love to get you through this. It seems like only yesterday my dad was going for his mask-fitting but it was actually ten months ago! My dad had six weeks combined RT/Chemo (no surgery for him - his tumour is inoperable) and please be assured that my dad had 6-9 months of good quality life. It is only in the last few weeks he has gone rapidly downhill.

It's a rocky road ahead for you and your family but you will smile and laugh along the way. Cancer has taught me so much about myself and other people. Friends that I thought were good friends have avoided me and struggled to know what to say (even someone saying "I don't know what to say" is better than saying nothing at all) and people I thought were relative strangers have reached out to me and become good friends. I have learnt so much about love and patience and forgiveness and understanding. It's made me a better person.

Keep coming on here, the people are wonderful and no-one understands better than someone going through the same thing.

Naomi.x

I would like to say a big thank you to everyone who has messaged me/posted on here for their support. It really does help to know that so many people are silently willing us on.

Dad saw the DN and OT today. Hospice nurse coming next week (Thurs) to arrange transfer to Hospice sometime the week after. It all seems to be taking so long but we have been reassured that if dad were to have a crisis situation that he would be admitted immediately. It's so hard to know when is the right time for him to go in.

Yesterday I spent six hours getting five children ready to go back to school (thank goodness the baby isn't there yet!). Five school bags, pencil cases, uniforms, shoes, indoor and outdoor pe kits! I now feel everything is ready to go should I need to rush off to be with dad.

Some good news today for once! My eldest son has just finished year ten and took five GCSE's in May. He got his results today - 2 B's and 3 C's (he took foundation courses for those 3 and the maximum he could get was a C). He's not a naturally academic child and lacks self-confidence so I am over the moon with those. Never ever thought he'd even achieve a C! That sounds terrible but I'm sure mothers of sons will understand where I'm coming from!

Love to all.

Naomi.x

Congratulations to your son, Naomi.  Great result.

I just had a bit of a moment when I went upstairs to look for a warm top to wear.  It suddently struck me that most of the clothes in my wardrobe haven't been touched since Ali ironed and put them there.

Even after all this time, there are still things around the house caught up in her time capsule.

Oh Pete :( It's always the little things that take your breath away.

Keep going .....

Do you ever have to get clothes out of Ali's wardrobe for her to wear now that the weather is colder or is she warm enough in bed? Sorry it's a tough evening for you Pete. I feel for you both.

Naomi.  We have comfy pyjamas for Ali which she's happy to wear (especially since the majority of her time is in bed).

I have laid out her pyjamas and my most used clothes in piles on the bed so that each morning I just take the top set off for Ali and I to wear (I put the clean/ironed stuff at the bottom of each pile).  It's not very often that I have to open the wardrobe.

I guess it's also another painful reminder that a couple of seasons have passed and nothing seems to have improved. Sometimes I feel like life is passing me by and I'm stood still watching it. I'm stuck at the beginning of October last year when dad was diagnosed. My mum says she feels like she has been holding her breath for almost a year.

It's a cliche but it's still a slap in the face in a strange way that the rest of the world is going about its business, completely unaware.

Debs and Naomi - thank you both x

My Dad (63) is scheduled to start his treatment on 19th Sept although from what my mum says, it sounds like he doesn't want to go ahead. Still, hopefully he will re think before that!!

Naomi-well done to your clever son-and to acheive that while all this surrounds you, he's a star.

Thank you Tasha but he's really not that clever - he's incredibly unmotivated. Ah well, that's boys .....

My dad was 64 when he he was diagnosed. Prior to his illness he was a really fit, healthy and active man. The RT probably had a worse effect on him than the chemo because the side effects are longer lived. He was still extremely tired about three months after finishing it.

My dad also didn't want to do any treatment but he did it for us. He didn't regret it, even when he was feeling really poorly.

Hope all goes well for your dad.xx