We Talk Brain Tumours

Afternoon all, hope everyone is having as good a Sunday as is possible right now.  I thought I would pop in and spread a little light humour.  I am hoping there are some Harry Potter fans out there in Macland as you may have to start calling me Harriet after this post.

Whilst shopping in Tesco's last week, one of the titanium bolts I have holding my skull together (this one is on the left side around the hairline) started to hurt quite badly and out of nowhere!  It lasted several minutes and I had no hat or headband on to apply pressure (I have two bolts positioned around the forehead & hairline which "ache" after several hours of wearing a hat or headband they are not visible but very easily felt)...........so, there is only one reasonable explanation...........

Voldermort was somewhere in the Tesco Church Langley store at the same time as me ............ simples!!!!!

I am hoping he will try Sainsbury's or Waitrose next time, cos by jolly it bloomin hurt!!!!!!!!!!!!!! Perhaps I should have used my lipgloss and tried the Expelliarmus spell on him!

OK off for a cuppa.  Love & strength to those who want or need it xx

Dear Debs-reflections,Deli and Kerry 1045.  Thank you so much for your replies and encouragement, it is really appreciated and has helped. Today has been a better day, I got up this morning determined to let go a bit, relax and just enjoy the moment and not try to analyse everything and we have had a reasonable day, no real tension and anxiety. So thank you for your good advice, insight and honesty.

Debs your experience in the supermarket sounds like an interesting, albeit painful one to say the least...did the ache start in any particular aisle, wonder if where you were in the store had any bearing on it ?  

Hope everyone is managing to have a reasonable day, my thoughts are with each and everyone of you, as I read your posts each day.

Take care my friends,

Elaine B.K.

Elaine - so pleased to hear you had a better day today. Bad days are always followed by better days but sometimes it's hard to remember this. I hope your days continue to improve.xx

Debs - that sounds painful! I am fiercely anti-Tesco and the bright lights in there are enough to give a healthy person a headache. Hope you feel better now.

Pete - thank you for your kind words. I sat with him for two hours today and all he said was "home" repeatedly. I hope you're right and he's content wherever he is as long as we are with him.

Kerry - oh it's such a nightmare isn't it? We are going to look round some nursing homes on Wednesday. We know which one we would prefer but we are waiting to hear how much, if anything, mum needs to contribute towards the cost.

Naomi.x

Evening all. I'm still on a bit of a downer so apologies in advance.

Another difficult day with dad today. As soon as I walked in to his room, he swept his water jug and beaker off the table (thankfully both plastic) and was really angry with me. For two hours he clenched his fist and growled at me. He is so frustrated on so many levels. He is trapped in his own body and can't even voice his feelings. On many occasions he said the word "home" and cried. It's so painful as I would love to get him home but there is no way it is physically possible, sadly.

He banged his head getting in to his hoist today (seriously, what is with those things?!) so was miserable anyway. The nurses offered to wheel his bed out in to the sunshine but he wouldn't have it, he's so stubborn sometimes! The nurses are so lovely and I cannot fault their care but I still get the feeling they don't really understand brain tumours. For some weeks now dad has smelt a nasty odour - usually faeces - that the rest of us cannot smell. To this end he likes to wash his hands constantly as he thinks he has faeces on his hands and is dirty. The nurses just don't get it and can't really figure out why he does it. I pointed out to them today it's a symptom of end-stage disease and one of them said "oh yeah, I think I read about that"!!!

We should hear tomorrow how much funding mum is entitled to with regards his nursing home. Then we can get on and view those that are within mum's price range. I am still worried about how he will cope with the move but we have no choice. I was alarmed to hear that once discharged from the Hospice's care, he will be discharged from the Mac Nurse's care too (as they are attached to/emplyed by the hospice) and will instead be under the care of the nursing home's GP. First being discharged from the oncology team, now this. It feels like no-one wants him.

Anyway, time for some chocolate for me then bed. Tomorrow marks 4 weeks to the day since dad was told he had a maximum of 4 weeks. So, two fingers up to cancer from our family tonight.

Love to all.

Naomi.x

Naomi.  So sorry that you're having to suffer through all of this, and you're being saintly patient with your father.  Hopefully the hospice team will start adjusting and coping better with your father's needs.  The good thing is that he still values your company and support.

After a few days of having a few hours on the sofa, Ali's been comfortably in bed all day today.  When she's more alert, she wants to sit up, but for some reason, sitting up ends up in giving her almost intolerable pins and needles in her feet.  So, she sits up for a while and then starts fidgeting, trying to make the pins and needles go away.  It can be pretty frustrating for all of us.

Dear Naomi,

I'm so sorry to read how difficult the visit to your dad was today, you are clearly doing everything you can, although it can't feel that way to you and you feel torn apart by what is happening, willing you the strength to weather this storm.

I do hope that your mother gets some helpful news tomorrow in relation to the funding.With everything else going on, it is very hard to have to cope with all the financial elements of the situation too...

Someone else who contributes to the site, may know better than me, but I am surprised that the Mac Millan nurses will cease their involvement. It may be that the facilities at the nursing home would have this element of care in place ? I can understand too that the unsaid message appears to be that everyone seems to want to withdraw, ironically at a time when help/advice/support feels really needed. 

On a lighter note, enjoy your chocolate. Milk or plain ?

Elaine B.K. xxx

Oh my gosh! It has taken me forever to find WTBT in the new layout!

Just a quick update - dad is now having diazepam and morphine via driver. Diazepam as he is so distressed (he has lost the use of both arms and legs and gets so upset when having to get in to the hoist, he is also angry and aggressive) and morphine as he is experiencing bad headaches and bad stomach pain due to impacted faeces (hasn't had a proper bowel movement for almost 3 weeks). He has also been put on to a liquid only diet due to disphagia (spelling?) - he can barely swallow now and all medications are either rectal suppositories or via his portacath. I learnt something yesterday - water and thin liquids make choking worse so he has milk or calshakes or liquid yoghurt to give him fluids.

The doctor said off the record that it is unlikely he will need to be moved out of the hospice and in to a nursing home now as we have entered the final and palliative stages of his journey. They said we are looking at about a week to two weeks but dad hasn't followed the rules so far so we shall see. That said, i just want him to let go now. You wouldn't let a dog suffer like he is and I am struggling to hide my tears in front of him and that isn't fair to him.

Next Sunday marks a year to the day since dad first collapsed. It has been by far the worst and best year of my life. I have learnt so much about human nature. I have come to terms with the fact that I am going to lose my dad. I have learnt that people whom I thought were my best friends have become little more than strangers and that strangers have become my best friends. I have learnt that I am both stronger and more cowardly in equal measures than I thought I was. I think I am a better person for having been involved in dad's illness but I wish that dad didn't have to leave us in order for me to learn those lessons. At 38, I have finally grown up.

Love to all of you.

Naomi.xxx

Naomi,

Thank god you found our thread.  I have searched unsuccessfully and pm'd u today to see if you could help!

Your post reflects all that is happening with us and believe me when I say I know exactly what you are feeling x  Seems that both your dad and G are fighting the odds but I feel just like you that the fight will soon end and G needs to go to a better place.

Hope everyone else manages to find us.

Ange xx

Gosh Naomi, you couldn't have worded all of that any better, I agree 100% with everything you have just put - it is amazing what you learn from this about life, people, yourself, etc.

Am sorry your dad is going into the final part of the journey but no doubt you are hoping like we do that this part is as quick and kind as possible.  Like you say, animals do not have to suffer like this.

Sending you strength & love x

Finally, I've found WTBT again.  Since the update, the site has been running very slowly for me and I've only just found our home from home.  Now I've added it to my favourites, things will be a little easier for me.