We Talk Brain Tumours

Daisy and Mandy, your posts are always so dignified and composed, you are both amazing - as are all the carers/patients on this journey!

I thought I would share my good news with you all, no sign of tumour on my MRI - although my oncologist hadn't had the full report from the radiologist (scan was 1.5 weeks ago)but that was her "informed opinion" of my scans which she showed me.  The scar area is less "white" on screen and apparently there is still some blood and gunk (not what they called it) in the "hole left by the op".  Midline is still nice and rod straight and they don't want to see me for 3 months and my next scan is in 6 months - half a year of almost worry free time!

So a huge sigh of relief and a pub lunch on the way home to celebrate.  Tomorrow we are going out to get another bead for my Trollbead Bracelet - I treat myself everytime I get good news......the aim is to fill the bracelet!

Love & Strength to you all

I'm currently waiting for my first post op scan, and am also thinking about returning to work. You all seem to be a little further along than I am so I'd like to ask an opinion

I had sorted a phased return with work, who have been really understanding and are letting me use some carried over holidays from last year so I'll be getting paid full time.

I put all this in place last week based on my first scan result being on 2nd March and I would return on the following week. Got a letter off Hospital saying that they have moved my appointment until 16th March!!

Did any of you guys go back before the scan results?? I'm a bit split here on to stick to target set or to wait until scan results before committing to return???

Oh and to the woman thats named her tumour, I had a dream few nights before mine was removed that it wasn't a tumour but a pirates of the carriabian 3 crab! You know the ones that help Jack Sparrow get his ship out of the desert and into the sea. So mine is known as The Crab

Hi

Rona, I understand your worries - to allow others to care for those we love most is hard, you feel out of control and guilty for accepting the offer of hospice respite. However, I need to try and comfort you - Peter had two stays in the hospice, both for respite.  The last time he was discharged exactly one week before he died - he was on top form - and I am so grateful for that week.  Both times he was in meant he was excited and pleased to see us and us him. He was able to put that infamous act on whilst we were there, he couldn't do this at home.  I did feel guilty but I did need to recharge and didn't realise it.  Although I spent most of my days with him in the hospice we just sat and drank coffee, watched tv and talked - I didn't have all the other stuff to do - and then I went home, yes feeling guilty, but was able to go and have a nights sleep without that huge weight of responsibility - it certainly meant Peter and I enjoyed seeing one another in a whole different way. I actually wouldn't change this and hopefully you will be surprised and find your dad actually enjoying his stay with all those lovely nurses who do a wonderful job xx.

Debs - wonderful news and certainly news to be celebrated. x

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Thanks so much Mandy, Your reply makes a lot of sense to me. I was feeling guilty and worried that he would think I was dumping him there. I have also been feeling guilty at home though as I feel I should be making the most of each day with him etc etc but with all the stress sometimes involved in having him living with me I get a bit fed up. I feel now when I do see him it will be nicer and more relaxed. I just hope he enjoys it too. It felt strange coming back to an empty house this evening but also a bit of relief at not worrying about what state I might find Dad in. At least now he has someone there all the time. Thank you for your kind and wise words!

Great news on the scan result Deb. That's brilliant x

Dear Green tree

Try not to feel guilty, you are an amazing daughter and your dad knows it.

Graham spent 3 weeks in hospital and I found that incredibly exhausting. The staff felt it would be too hard on me to care for him at home and advised I send him to hospice. I agreed with this but when they phoned there were no beds available. They decided the next best option was private hospital and that's when I began to feel very uneasy as I wasn't going to send him just anywhere there happened to be a spare bed available. I then made the decision to bring him home and my Dad and sister were here with me every step of the way. I could not have done it without their support and I also only had me to look after, I doubt if I could have coped if I had small children, such as yourself.

I must also add that over the 3 weeks Graham was home there were several times when I questioned myself as to whether I was giving him the best care he deserved. It was a huge learning process.

At the end of the day we do what is best for our loved ones and you should be very proud of yourself for everything you have done and continue to do.

Much strength and love to you.

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Debs, I am so happy for you, what a brilliant result. May it continue.

Cheers

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Hi All

Sorry for not posting for so long, I have been reading all of the news though and continue to be amazed by everyone's strength and persistence through so many obstacles. Ali has been very well and even managed four days skiing in France, which after surgery, RT and two cycles of TMZ I think is pretty impressive, but we have the joy of another scan now so tension time. One thing that I was wondering about was Ali's scan which was ten days ago and we have heard nothing about an appointment to get the result. Whilst Charing X Hospital is often inefficient this seems longer than we would normally wait, does anyone know how long is normal?

Love to everyone - Charlie

Charlie, I think every hospital may do it different.  I am under Queens, Romford and every time I see my oncologist, I leave with a form for the next appointment.......take it to reception and the appt is booked then and there.  They sort out the scans for inbetween.  I have just been today for the results of my first scan since finishing TMZ in December and left with my next appt for May 14.  I had my MRI on Feb 4th so waited 8 days and the stress was bad enough in that time and even today my onc didn't have the full radiologists report!

I have a neuro-oncology nurse that is my link to all departments and queries, do you have anything like this??  If so, a quick phonecall couldn't hurt could it?! If not try ringing the oncology department or their secretary..sometimes they just need a very gentle PUSH!

Good luck with getting the appt and even more luck with the results.

Hi Charlie,

Debs is right. Sometimes they need a push but sometimes they need a huge shake!
I wouldn't hesitate to give your neurologist or normal contact a call and get an appointment. It's more than likely they were also skiing and things got a bit behind.

Great to hear that your holiday went well.

Miggins xx