We Talk Brain Tumours

Dear All (too many to mention)

My heart is heavy after reading all the bad news and heartache people are suffering.  I saw my oncologist on Friday and she said I look really good and then she asked if I am working........puleeeeeze, I worked with pre-school children, told her I didn't think it would go down to well if a child asks me what something is and I reply with "I was hoping you could tell me?". 

My word recall has worsened and my concentration is crap at best.  BUT compared to everyone else here, I am doing so well.  Just keeping my fingers crossed they don't stop my DLA next March, we really do depend on it.

I also wanted to remind everyone that today is "Wear Grey for Brain Tumours Day".  I am decked out in grey (but then I tend to wear a little grey everyday if I can) and I have been trying to tweet it (such a novice on there).  There is a facebook event for it and I am surprised at how much support we have.

I also sent a rather angry and emotional email to Cancer Research UK after seeing them proudly display their diagram showing the distribution of funding for research, top of course is Breast Cancer with £44.8 million and last is.............Brain Cancer with £3.8 million it makes me feel like we are worth so little in their eyes and breast cancer has seen amazing therapies come out with outstanding results (not for everyone I accept that) but while ours is still uncurable......we get less than 1% of their funding.

OK rant over.....my love and strength to all who want or need it.

Firstly to Naomi - just to say that my thoughts are with you and your family very much....

Pete, thinking of you very much too. 

Debs, It is lovely to read your posts again. I can relate to how you are feeling cos I see it so much in Steve. The way the Oncologist said to you 'You LOOK well', reminds me of the comments that Steve gets. Just because he looks well, they don't see behind the closed doors. The days where I have to ring him every two hours from work to check that he has woken up and taken his insulin- that is a result of the last lot of dex he was on. The days where I know he is depressed as he wants his old life back. The days when he gets so word muddled. The days where he is totally dependant on his stick. People don't see that. Yet I know that compared to A LOT of people that our journey is a positive one! The fact that he CAN walk with just a stick outside, the fact I CAN hold down a full time job as I can leave him on his own, the fact that we can plan holidays, go for meals, and go to concerts still. Not a single thing is taken for granted. The fun that we get with his word muddling!! Like when he was calling me by our daughters name and couldn't understand why I wouldn't answer him|!! Stuff like that!

As for the funding, well that doesn't suprise me at all regarding Brain cancer and research. What does worry me is that Brain Cancers I feel ARE becoming more common and particulary in Children. What is it going to take for them to invest more? More lives to be devasted by this horrible diease.

Thinking of you ALL on here.

Julie

It's been a long time since I posted but I wanted to make sure you all had access to this BBC radio 4 programme. You can listen via the BBC website

 http://www.bbc.co.uk/programmes/b013xsm1 

Best wishes to all.

Hi all.   Couldn't manage to sign in yesterday so was unable to respond, not that I could say much other than my thoughts are with you. x

Hi Julie, I so understand that, I don't have any left-side weakness YET but I can't stand on my left leg for long - which is ok because I don't tend to hop around much these days, no three legged races etc, however  getting in and out of the bath/shower is entirely different.  I have wobbled and toppled a few times and now manouvre myself around to get out with my right leg.  Very ungainly and I wont bathe unless someone else is home to help me should I fall.  My concentration lapses have also caused me to step out to cross the road with a car coming...I jump back but can see the fear in the eyes of the drivers  

As for word muddling and total loss of recall of a word, this has worsened and still does particularly with tiredness.  I liken it to being a librarian, someone asks for a book, I know we have that book but I run around like headless chicken trying to find it.  They may leave and of course with time, I remember where the book is.  Not sure if that helps explain it very well but its how I feel.  I also get quite cross if my family can't fill in the blanks, like I think they should know what word I want lol

I have just finished listening to CH's link, VERY VERY INTERESTING.  I met a lady on here 2 years ago who used this drug in NZ and the portion of her tumour (which was exactly the same type AO3 & location as mine right frontal) that could not be removed during surgery, died and disappeared.  She still hasn't had RT or chemo yet.  Of course, it could have been plain luck but its always been at the back of my mind that this cheap anti-depressant could really help - not least if you take it at night, it helps you sleep.  Oh how I miss that, not slept through the night on a regular basis since surgery and that was only until all the anaeshetic(?) had gone from my body!  How many of us BT patients (and carers) have a form of depression, probably more than not!

I encourage you all to have a listen if you have a spare 40mins .

Love & Strength to all who want or need it.

Good morning to you all. 

I did an absolutely stupid thing on Monday, which Doreen is now paying dearly for!

I decided to get her out of the bed and into the garden for a few minutes, she hadn’t inhaled good fresh air for a long time and I don’t know how many more chances she will have.

I gave her a dose of Oramorph and proceeded to put the sling into place. After 20 minutes or so I commenced hoisting her out of bed to above the wheel chair. I put a Kylie sheet on the seat, under side up, to enable me to pull Doreen more upright when she finally landed.

After landing and detaching the sling from the hoist I could see that she needed pulling up, and pulled the Kylie from behind the wheelchair. Very unfortunately the Kylie moved without Doreen coming with it and she slid out of the chair and onto the legs of the hoist and floor. Her scream was eerie, she went white and sweated profusely. I was kneeling behind her supporting her osteoporotic back with my knee. The sling had come away when she slipped on the floor, so I wasn’t able to reattach the hoist.

Fortunately I could just reach the phone and rang a neighbour. Thankfully I had left the back door open in readiness for going into the garden. Husband and wife came straight over, but there was nothing we could do between us. We rang the emergency services and an ambulance man was here within 10 minutes, I had in the meantime given Doreen more Oramorph.  Between us we were able to get her back into the bed and as comfortable as possible.

To cut a long story shorter, she hasn’t uttered anything at all as yet, nor eaten anything.

I called the Doctor yesterday and she may well have damaged limbs, as she winces when arms or legs are moved by the carers.

Unfortunately there is nothing that can be done about that, except to try and control the pain.

Everyone is telling me it’s not my fault, but the facts speak for themselves.

I feel so guilty it makes me sick. Trying to be far too clever.

If someone learns from my costly error that will be at least something positive from my stupidity.

The community nurses don’t visit or seem to care about us, but thank God for the emergency services, without whom I don’t know what we could have done.

Love to all.  Martyn XXXX

Martyn, please don't beat yourself up....it wasn't your fault it was an unfortunate accident....you had Doreen's best interests at heart.  I know you are feeling guilty (we all would, it's only natural) but as I said it was an accident and there is no one to blame.

The slip to the floor would be a shock to Doreen's system which may be why she has been quiet and hasn't eaten for a couple of days, hopefully she will return to her ususal self within the next 24 hours - and if she doesn't those District Nurses MUST be made to come and visit and offer you both support. Do you think she may have bruised her limbs ?  Please don't lose confidence in yourself, your care for your darling wife could not be bettered.  Take care, Debs x

Debs - I love reading your posts, you always make me smile, you should put your experiences into a book.  

Martyn, yes you have had an accident, unfortunately accidents do happen and no matter what any of us say you will feel guilty, but had it been anyone else you would be one of the first to offer support.  I don't understand why you are not getting more support from the DNs or SW or macmillan team, I hope this gets resolved soon.   You say she may have damaged her limbs but nothing can be done, I dont understand, if she needs treatment she should get t no matter what her other diagnosis is.  Please don't beat your self up, you are an amazing man and have been a real inspiration to me throughout my journey.  Take care 

Joanna xx

Dear Martyn

I am so sorry to here about your incident and please, please do not feel guilty as you have always done your best for Doreen and have her best interests at heart at all times.

I know how desperate you must have been as I was in the same situtation with Steve on many occasions when he would just go down like a pack of cards and me knowing that I wouldn't be able to get him back up again or have prevented him from falling in the first place without doing serious injury to myself.

In most cases I had to phone for help - 999 is sometimes your best option but emphasive that it is urgent.

The same thing happened to Steve when he was in City, Notts - Steve wanted to sit in his wheel chair to see how he would cope for being transported home (he was completely bed bound by then).

The nurses left him sitting on the sling and eventually, he started slipping forward with no way of holding himself back.

Although I called the nurses to help him, he started slipping more and some people kindly helped me to hold him inplace but the nurses still didn't come to help him so we had to do a controlled drop to the floor.

I find it incredible that the DN do not come and see you on a daily basis.

I know that we only had help for 3 weeks but I could phone the DN anytime night and day and they would always come to help.

During the night they came from Newark Hospital.

The most important thing is to keep you well because in our circumstances, I knew that it was only a matter of time before Steve injured himself by falling or I injured myself by trying to lift him.

If I had of got hurt I really don't know what would have happened to us both.

I know you are under City like we were - our Oncologist Dr Matt Griffin organised all of the help/care package for us.

Have City been helping you recently.

Take care and sending you my love and thoughts

Ann x

Naomi:  Sorry to hear the results of your dad's scan and how much worse it was than you expected.  But at least you know where you stand now and can plan accordingly.  On a day to day basis, nothing needs to change, but you now understand the reasons for any changes.

Martyn : I'm sure that many of us have been in similar situations in caring for our loved ones and mistakes are part and parcel of what we do.  I've had all sorts of problems with slinding sheets and I now point blank refuse to use them since they delight in finding ways of wrecking your day.

You've probably already done this, but an incident post-mortem with your OT would be a good idea.  Not because you've done anything wrong, but to refresh on technique and needs.  Since Ali's come back from hospital, I've had to radically change the way that I deal with her toileting.

Hopefully, Doreen will get over this shock to her system and get back to her previous state again