David's cancer story

Planning the Funneral

2011-09-28T21:49:55Z

We have registered the death and been to the funeral directors to arrange all the required paperwork. We have confirmed the date.

Now I just need to sort out the music, never been my strongest point. I'm more of a "if I hear a song I like I get it" kinda person rather than intro who sings what.

Thank goodness for the internet!

The Hymns I have chosen are:
In Heavenly love Abiding
Lord of all Hopefulness

David has welsh relations, some of which are members of the welsh choir or something. So we should be alright in voicing these.

To play as people arrive and depart is harder, I have narrowed down to the following, and thought I might also have them playing at the wake:
                                                                Goodbye my Lover by James Blunt
                                                                Because you Loved me by Celine Dion
                                                                Nothing compares to you by Sinead O Conner
                                                                Spirit in the Sky by Norman Greenbaum       (first song on exit)

Also to be played at the wake:
                                                                My heart will go on by Celine Dion
                                                                Knocking on Heavens door by U2
                                                                I'll be missin you by Puff Daddy
                                                                It must have been love by Roxette

Hubby passed Away

2011-09-28T20:32:20Z

Well, as the other one seemed to work, here goes with the second one.

Because hubby was getting very agitated he was prescribed Medazipan, which I keep calling Marzipan!

This helped to make hubby relaxed by Friday and not agitated. The nurses also informed me on Friday that hubby is struggling to swallow and is no longer eating or drinking anything.

Friday and Saturday he would open one eye but not for long, drifting and very sleepy. But smiles at things you say, especially memories and things about him that he did or said.

Friday my Mum and Sister + her husband are away in Torquey, rang my Dad and he said he was fine to have kids for the night. I stayed at the hospice.

Saturday my Mum and Sister + her husband travel back from Torquey (a day early) the kids stay at my Mum and Dads. I stayed at the hospice.

Sunday morning, I woke up and said "Good Morning, I love you" hubby said "I love you too". I phoned my mum and asked if she could bring the kids to visit cause I wanted to see them, they were their normal boisterous selves - don't know why I was missing them.

My sister and her husband were on their way to the hospice.

My mum, my youngest and I were in the room, and my youngest was saying "when Dad dies can I have this thing that was dad's" "can I have that thing that was dad's" then said "Why has dad gone a funny colour".

Hubby drew his last breath at 12:20 noon on Sunday 25 September 2011.

My Mum took him out of the room, and I called a nurse. My mum went to the car park to meet my sister. The nurse confirmed that hubby had gone.

I went out to the car park, my first instinct was to not let the children see their dad - motherly protection. But the youngest already has. So decided to tell the children and give them the chance to decide for themselves.

So we told them, and my middle child said "No, he isn't" I asked if they wanted to see him and they all said yes. We went back into the room and my middle child went up put his cheek near hubbys mouth and said "I can't feel anything, he is dead". My youngest child put his hand near hubbys mouth and said "yes, I can't feel any air". They all said Goodbye and then my mum took them home to her house.

I stayed and sorted out his stuff with my sister. Then we went to my mum's. My mum cooked all of us dinner.

Now sorting out all the paperwork required and organising the funeral.

I feel fine, yes I am sad, but it was expected. Strangely I felt more upset on Thursday when he was agitated and pushing me away, than I do now. Everyone seems to be expecting me to collapse in a pool of tears, but I feel a sense of relief that he is no longer suffering and is released from this dreaded disease, it can't get him anymore, it can't make him suffer any more.

I have obviously over prepared the children as well as they don't seem to be too phased by the passing of their dad. They have taken it really well, but I think it will hit them at the funeral.

I think now I am glad he was in the hospice, I think it would have been harder if he was at home.

Nearing the End

2011-09-26T23:21:51Z

Hoping I have done this right, and it should appear in my Blog for Davids_cancer_Story.

Thank you to James Burnettfor helping to point me in the right direction and get my blog. I couldn't even remember exactly what I had called it.

Because I did this blog already, I am going to be brave and try and do 2 blog posts. Fingers crossed.

So last Tuesday David's headache was worse and they increased his steroids and the following day he was feeling tons better to the point that on Sunday he had gammon for dinner on Sunday and smoked salmon on Monday.

This week on Monday he was bright and with it, Tuesday I arrived and he had deteriorated and developed a cough overnight. When I went back in the evening he started being sick and bringing up flem . His voice was also very weak.

Wednesday I went in early to catch the doctor, she said that he was having difficulty swallowing tablets so they were going to set-up a driver and are giving him some stuff to help him feel relaxed. He did seem to perk up a bit in the afternoon and his voice was stronger.

Thursday he seems to have deteriorated further this morning, his voice is weak, and his co-ordination is all over the place. I came home for the afternoon, and went back in the evening and he has deteriorated further. I am unable to stay with him because the kids aren't allowed to stay. My sister and her hubby and my mum are all away this week, I have told hubby that he is supposed to be good this week, and isn't supposed to do this until next week.

People keep saying "oh I think you are marvellous the way you are coping". But I'm not coping. I am not strong. I am hurting inside!

The way I have always dealt with problems is to bottle everything up inside, and not show how I am feeling. I keep smiling and trying to keep going as though nothing is happening, because then anything will be alright, and just maybe it won't really be happening. While hubby was "with it" it was easy to pretend everything was okay because he looked okay, he didn't look that ill.
But now, now he looks poorly, now he looks like it could be anytime soon. Now it looks like he won't make the weekend, let alone another week.

And I know he won't get better, he can't get better. He is only going to get worse, and I keep hoping that he will die sooner so that it isn't prolonged and we can all move on to the stage of grieving. We are ready, we have lost him now, he just lays in the bed and moans at the slightest noise. He tells me to go away when I try to hold his hand, he doesn't want me anymore.

Tonight I have had a good cry, and feel so much better for it.

What a couple of Weeks!

2011-09-18T01:03:59Z

Having spent time writting comments on several blogs, when I went back to check for updates none of my comments were there. AAAARRRRGGGGGGHHHHHHHH. I did log a technical report, and got a message saying I should be able to now, but still didn't seem to be able to. Just tried again this evening, and my comment appeared, hooray.

During the week after I got in from dropping the kids at school about 11am, no wonder I never have time to do anything we stood talking / catching up on six weeks worth of gossip ( and we are just the parents). I was busy trying to remember to make sure I sorted out all things hubby needs that we forgot to take in (hairbrush, spare flannels, deodorant) I thought I did well remembering his toothbrush and toothpaste :-)

The phone rings, it is a woman and she starts blah blah blah, and I am like skip to the point already, and she did you have various cover with us to protect against boiler breakdown etc, and wondered if you want cover for electrical emergencies. So I say I think we have it with someone else, so she starts asking who and various other details.

What! Do they think I am just sitting here thinking oh better make sure I got my policy documents to hand in case someone phones out of the blue to discuss cover.

So I told her that at this moment in time an electrical problem was the least of my concerns and that my husband was very ill and I was more concerned about that than anything else. She started with the oh sorry to hear that, I'm sorry blah blah blah. And I'm thinking you don't even know him.

The blah blah is because I wasn't really listening to those bits and they weren't really important bits anyway.

When I was in visiting hubby on Wednesday one of the doctors looking after hubby came around, and we had a chat about medication etc. and she said she would write up for him to keep having the heparin injection (which is good) I said I don't have many left and needed to get back to the hospital to get some, she said don't worry we can order some. However I get a call on Friday from the hospice sister asking if we have any more at home because they haven't been able to get any yet. So I need to take the last 6 days worth that I have in to the hospice.
At least they phoned and didn't wait until I went in to ask me to bring in it, especially as I'm only doing one trip some days., though they had enough till Saturday anyway.

While talking with hubby on Thursday I said about bringing the socks in, and needing to get some washing on but not having time to sort it out cause of coming to visit him, and we ended up discussing inventing an app that you could use to communicate with your house and control a robot to do all your chores while you are elsewhere - can you image that?

Saturday was my sisters birthdays ( I have 2 sisters, they are twins), we had arranged to have a party at my house, because of David, but decided to still have it here anyway. One of my sisters is disabled, the other is the one who has been very supportive with helping with the kids and hubby. She organised most of the food, so I didn't need to worry about that.

After we had eaten we all popped in to see David, my Mum and Dad left first and the kids, me and my sister plus her hubby went about half an hour later.

Eldest child went off to Y6 School camp this week (Monday to Friday), needed to be at the coach by 2:15pm, so we dropped the boys at school, then went home and packed her case and had time to pop and visit hubby so she could say goodbye. Went home, had lunch and got to the coach in plenty of time.

Took the boys into the hospice Tuesday evening to see hubby, but their behaviour was awful! they kept running around and making tons of noise. Ended up leaving early and shouting at them and telling them if they are going to behave that badly we won't go and visit dad again!

Wednesday visited hubby during the afternoon, cub night so don't go to hospice in evening anyway.

Thursday, my sister says she wants to pop and see hubby in evening, and will help with kids. Discover an old friend she still has contact with works at the hospice. Arrange to meet up, and the kids are perfect little angels???? I think it is because of old friends presence.

Friday, one of hubby's cousin's is down from Scotland and visiting today, but don't know what time. Get her mobile number from another cousin, and try and ring her but get no answer. Stay at home despite having planned to go and see hubby during day cause I forgot she was coming until I checked the calendar. About 1:30 she rings and says she will be here around 3pm! I say she needs to be here either by 2:30pm or after 4pm cause I need to collect the kids. She arrives just after 2pm. Collect daughter from coach, she has had a fantastic time away. A friend offered to collect boys and walk them home for me, so we go home and do dinner. Boys arrive home. Then we all go in to see hubby, boys behave and daughter helps keep them in check.

Now we are at today (Saturday), the older two have flower arranging (my mum's hobby, and she has got my children into it too) which they enjoy. Have arranged to go to mum's for lunch, so we drop the older two off, and me and the younger one go home and decide to decorate some cakes. Mum offers to collect the older two as she wants to go and see the ladies (her friends) that run the group. So we go straight to her house for lunch. Pop in to see hubby and take in the two arrangements and a cake (which he enjoyed).

I have to say though, despite all this I feel really relaxed and I am getting undisturbed sleep, and feel a tad guilty but in a good way because things are relaxed and I am sleeping well and I have energy, and the poor nurses at the hospice are running around after hubby and dealing with his groaning during the nights, and he is disturbing them at 3am and 5am, but not me.

Hubby seems to have his feet well under the table so to speak, and is enjoying being in the hospice, and looking out the window at the birds and having complete quiet (except when we all visit) but he does enjoy the visits.

Hubby had a bad few days when he first arrived, they have been giving him different pain meds and he perked up, but Tuesday this week he had a head splitting headache and looked really bad, but they increased his steroids and have also been giving him morphine (he thinks) anyway something purple, and he has perked up and on Thursday was on top form, in fact he was feeling so well that he suggested asking the nurses one day to hold his lunch and we could take the wheelchair and drive into the nearby town to a fish n chip shop to get a vegetable pasty for lunch. Urm nice idea, but you still can't support your weight, and need to be hoisted out of bed into the chair, perhaps I could just arrange to bring one in to eat there.

BTW, just in case anyone is thinking look at the time of her post, she should be asleep. I was typing my blog in word (Mac land unreliable sometimes, also I can check my spellings*) then fell asleep. Woke up and if I don't post now another week will fly past.

* Just in case I missed some spellings I will add this little poem:

I typed this little poem, eye know the spellings are correct, cause eye ran it though my PC spell checker.

Ups and Downs

2011-09-06T21:47:04Z

I wrote a blog, but didn't realise the site was down again last night, so when I published it, it disappeared into the ether lost forever as I didn't copy before publishing. Note: Must copy blog before publishing in case it gets lost.

Managed to come downstairs for 4 days in a row, defiantly feeling better as asking for cups of tea and glasses of Whisky.

Until Friday, when hubby felt tired and just wanted to rest in bed. Saturday, he didn't feel upto coming down stairs and spent the day in bed. He said he felt constipated again and started with the Laxitose, which he decided actually doesn't help and makes the pain worse.

Saturday night he was moaning in pain and started being sick actually bringing liquid up, and I was up emptying the bowl and being attentive and supportive to him. As a result I got little to no sleep.

Our youngest who usually ventures into our bed in the night was at a Beaver Sleepover from 11am Saturday to 10:30am Sunday.

Sunday morning after the other kids have had their breakfast, hubby decides he wants to go and sit on the toilet. He manages with help from me and his frame to get there okay. However on the way back (about 10 normal paces from toilet to bed) he collapses, I was behind him so it was a guided sit down rather than a fall down and no injuries. He said his legs just gave way, he is unable to stand up again but tries to get onto all fours to crawl and just ends up laying in the hall. I get a Pillow and a blanket and turn the frame around and prop hubby up against it so he is comfy.

It is now 9:30am and I need to leave about 10am to go and collect youngest, who will be upset if I am late as all the other parents will be there.

So decided to ring my sister and her hubby, as no time to wait for an ambulance. They arrived just on 10am, and I dash out the door, leaving her to keep an eye on hubby. When we return my sister helps me get hubby back to the bed.

Monday morning our mac nurse arrives for her scheduled visit from my phone call last week to see how hubby is, and decides that it would be best to try and get him into the hospice to assess what equipment he might need, such as a commode and a topper for the bed to reduce the chance of getting bed sores.

Last week I would have snapped up this chance of a break, but this week it just seems so inconvenient. Trying to fit in visits between school runs and dinner times and Beavers and Cubs and Homework and Reading and everything else. At least with hubby at home I can sit on the bed keeping him company and fold clothes and pair socks. I don't think they would be too happy if I took it into the hospice to do.

Also the nurse started asking if hubby had given any thought as to if he wants to die at home or at the hospice. What? I thought it was just constipation. He says he will go along with whatever is easiest for everyone, I would like to be with him, I think, or at least have the chance to be. Which if he is at home I can do, if he is in the hospice it will be harder.

Then I mention that I need to contact the hospital for some more heperin injections (hospital only drug) and the nurse says to wait as they (the hospice) may decide he doesn't need them anymore. How do they know? Has the blood clot in his lung miraculously disappeared? Is there something they know the consultants don't?

When it was prescribed the doctor said he would be on it for at least 6 months, he's only been on it for 2 months.

Maybe it would be better without the injection, my internet research showed that it would certainly be quicker he would feel rough and then collapse into unconsciousness and death would follow quickly after. We have talked and considered this option recently as he is getting weaker and really doesn't do pain.

Before you all ask, no we haven't been prescribed any morphine.

But I have upped his steroids, and I am trying to get him to take more co-dyramol, which he says are only for his headache and doesn't think they will help his stomach pains.

This morning the mac nurse rang and said they do have a bed, and she will organise an ambulance to come and take hubby in, it will be with us between half an hour and four hours. He is really starting to slur his words, and complains that his headache is getting worse. Hopefully they will be able to get him sorted out and get him home soon.

Take care

Feeling_Better

2011-09-02T20:37:30Z

So over many years (about 15-18, since he owned his own house, and moved out from his M&D's) Hubby has built up quite a collection of different Whiskys, his Scottish heritage will be proud of.

The collection filled 2 1/2 packing boxes when we moved. We won't mention the one I opened and the cork split and went into the bottle - oopsie. Don't worry decanted and put into crystal decanter. We have a Whiskey label which he hangs on the Bells (perfect for making Hot Toddies, saraledge to use a single malt for this purpose). Also we won't count the one that was on the side and something fell off the shelf and smashed the bottle all over the cooker (built into worktop), for which I got into BIG trouble.

Following last diagnosis we counted the remaining bottles, as he has used up some since we moved and I haven't bought him any to replace them. He had about 25 bottles, so decided to see how many bottles we could get through. At 2 a night, we were going great. But the last couple of weeks with him feeling bad he hasn't had any.

But tonight he asked for a Whisky, so perhaps we can get through a few more (at least the open bottles, of which we have about 5 - all different) as it would be sacraledge to just pour them down the sink.

Umm wonder if that what was made him ill - co-codydramol and Whisky? Oh well, they were 12 hours apart (can't quite manage 24 hours). Perhaps I can convince him to have more steriods.

August Update

2011-08-26T23:07:34Z

Just to let you all know David is feeling a bit better.

Still hasn't been to the loo yet (no 2's) he is passing water and has been a bit squitty but as the GP said if not much is going in then not much is gonna come out. Too much detail, sorry move on quick.

He says he still fells full up and constipated, but the waves of pain have died down, not sure if that's due to increasing his steriods, or due to the laxotose. Anyway, whatever he is not in as much pain so that is a good thing.

He still isn't eating much, so far he has had 3 spoons of yogurt, 2 scoops of ice cream and a pot of Ambrosia rice pudding. Oh yeah and he just nicked a couple of my caramel nibbles.

He is drinking a couple of cups of tea, so that is a good sign too.

Still in bed, and I have been bribing the kids to take it in turns to sit / play upstairs, and also to be good while I am sitting upstairs with him.

He is starting to look better and not so pasty, fingers crossed as the kids want to go out next Tuesday with some friends and if he is still like this I won't want to leave him on his own, so we won't be able to go.

Constipation

2011-08-20T21:36:49Z

This week David has constipation.

I appreciate that it is painful, I have suffered from it myself. But I had to get on with everything as normal, cooking, cleaning and looking after the kids.

David on the other hand, has taken to bed.Groaning about how bad his stomache ache is and not helping himself to get better. He dosen't want to eat or drink because that means moving and pain and nausea.

He woke me around 4am on Tuesday morning and was actually being sick mainly bringing up liquid. He normally just makes reaching noises, and doesn't bring anything up since his operation for oesophageal cancer.

He was bad throughout Tuesday, but didn't want to eat or drink anything. Initially he didn't want his steriods in case he couldn't keep them down, but his head was so bad that I insisted he took them for the sake of me and the kids.

Towards Tuesday evening he started to feel a bit better and managed to get comfy and have some sleep. He awoke me on Wednesday around 6am making the reaching noises, but not bringing anything up. Again he didn't want to eat or drink despite my efforts to try and get him to eat as this ultimatly should help him.

Thursday morning I suggested calling the doctor, he said it wasn't worth it. Mostly he slept but still wouldn't eat or drink much.

Friday, still not eating or drinking, can't bear this anymore so called the GP anyway. She has given me a prescription for luxtose so hopefully this will help. Gave him a dose Friday evening, another this morning (Saturday) and a third this evening.

Still complaining of stomach pains, comes over in waves. Hasn't been to the loo. Still not eating or drinking despite the fact that I cooked roasted vegetables tonight.

Men !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I don't honestly know how much longer I can continue with having to run up and down the stairs to check on him and trying to stop the kids squibbling with each other because my attention is on him.

It wouldn't be so bad if he would at least help himself by trying to eat a little bit, or by keeping his fluids up.

August holidays

2011-08-20T20:39:13Z

So we have been fairly busy over the last few weeks.

We have had a trip to Diggerland, Monkeyworld and have had a Day out with Thomas at the Watercress Line Steam railway.
David enjoyed watching the children enjoying themselves, and even managed to partake in as much as possible and enjoy the days out too.

We have just 2 weeks left, the kids are starting to get on my nerves now that the trips out are starting to reduce so that I can get things organised to go back to school. Why oh why can't they just be nice to each other, why do they have to fight with each other.

They only seem to manage three weeks together. AAAARRRGGGHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH

Kids behaviour is not helped by the fact that on a good day David backs me up when the kids start squabbling amongst themselves, and on a bad day tells me off for trying to sort out the squabbles in front of them.

On a bad day, he complains of headaches, and tells everyone off for making lots of noise and shouting, the kids are just playing making normal kid noise and no one is paticularly shouting. Just must seem louder to him, because of the headache.

Oncologist appointment - results of CT scan

2011-07-25T18:44:00Z

So we found out that David hasn't got cancer anywhere else just in his head.

And I was right that they (the oncologists) thought the brain cancer had gone following the radiotherapy.

So apart from the detection of these blood clots on David's lungs the CT scan was essentially a waste of time. Apparently cancer patients are at high risk of blood clots in lungs according to research I did on the internet. Not that every one with cancer will get them, or that every one with blood clots will get cancer.

The member of the oncologist team that we saw said that there wasn't really any further treatment options thatthey could offer for David and said we wouldn't need any further appointments to see them, but they will always be at the end of a phone should we need them. - Which is great news, and what we had expected them to say the last time we visited just cost us another £12 in parking fees and 2 further visits to be told.

The kids are off school now for 6 weeks, so I have planned some excursions so that we can make the most of the time we have left with David as a family.

CT Scan

2011-07-15T23:13:51Z

So David had his CT Scan on Wednesday and they asked us to wait while a doctor had a look at them. We then had to see the doctor who said that the CT scan showed blood clots on David's lungs and he needs to have Heperin injections daily for the rest of his life, which I have to administer.

We will get the results of the rest of the scan at our oncology appointment on Monday.

Generally, David is feeling more tired, his stability is decreasing and his headache is increasing in intenserty. He complains that the tele is too loud - and I can bearly hear it. When I talk he complains I am shouting.

But still we are plodding on, and I get to push him around (in his wheelchair when we are out) and stab him (with his daily injection).

Oncologist appoitment today

2011-06-27T22:07:13Z

I am complety baffled about our oncology appointment today. Three weeks ago I said to David I don't think we need it and suggested we cancelled it, he said we should keep it as they may be give us some further information. This morning David said I guess the appointment this afternoon will be a waste of time, I told him I said that three weeks ago.

Anyway we went expecting them to say we won't need to see you anymore. Not so.

When we arrived there was a form for bloods, which considering we have been told he is terminal and now on the palative care route seemed a waste of time. I joked that they wanted to confirm that it was actually cancer. I also said if they have trouble, we will call it quits - he is not a human pin cusion, and since his chemo for the first cancer his veins don't like letting go of the blood. Anyway as it was a warm day, the blood flowed.

We didn't get to see the oncoligist just one of her bots, anyway either he didn't read David's notes, or the notes aren't updated correctly, or they don't see patients as people just slaps of meat to diagnose and pump full of chemo (sorry don't mean to affend anyone, just my opinion, David says I shouldn't be so negative and closed minded).

Anyway the Bot came in and had a chat with David, asked how he was feeling, if he was in any pain etc. David said he didn't have any pain, and was feeling pretty good - as he was (mind you he is on 4mg of the Dex steriods).
The Bot said they would see David again in three months, but may need to weigh him, but could possibly be done next time. He left the room and I said to David I don't think he knows you still have tumours in your brain, David said he must know.
We went to wait outside (as instructed), and then a nurse came and asked to weigh David, which he duly obliged. Then the Bot appeared and said they were concerned about David's weight loss and wanted to do a full body scan with the possibility of offering Chemo. I said scan fine, but no chemo. Bot said if we won't consider Chemo then no point in scan. David said he would consider Chemo so Bot said he would raise a CT scan and sorted out paperwork for us to go and book.

We will get the results of the CT Body scan on 18 July, lets hope its a warm day.

Next time maybe I should reduce David's steriods so he doesn't look so well?

I appreciate that for some people Chemo gives a little longer, or some relief from pain, and that some have no side effects and carry on as normal.

But I have pushed to keep David on Dex steriods, and taken advice so that I can adjust them so we can spend what time David has left with the children as normal as possible, not giving them a last memory of David being too ill to do anything with them.
Also the children break up from school on 22 July and will be at home for six weeks, I was thinking we could attempt a few trips out to places like Birdworld or Wisley or other local places, not trips back and forth to hospital to make Dad feel ill. Shouldn't we be allowed to spend what time we could have left without interferance from hospitals?

But if I try and talk about any of this with David he says I am closed minded and won't listen to my point of view. He takes everything the hospital says as gospel, they know best.
I'm sorry, do they have to juggle a sick husband and three young children?
Are they the ones that have to watch as their husband slowly becomes a shadow of his former self, and struggles to do things for himself?
Are they the ones that will help in the middle of the night when their husband can't manage to get to the toilet by himself?
Are they the ones that will have to drive their husband back and forth to the hospital while juggling three young children?

Then I don't think they should be the ones to make such decisions as to wheather or not David gets Chemo.

But this is all premature, as David hasn't had the scan yet, and we haven't had the results yet, and they might not find anything else.

But I wanted to write it down, I AM entitled to my opinion!

No offence is intended, and I know that for most the doctors and nurses do a great job.

The treatment and care we received following the original diagnosis of the first cancer was second to none, it is the treatment and care following diagnosis of the second and third tumour I have issues with.

Since the diagnosis of a secondary tumour in the brain I feel like we are slipping down a crack with no return, the oncologist team we see deal primarily with stomach / oesophagagl cancers, and just refer us to other specialists as the need requires, but these referals are short term and there is no follow up afterwards. Just the primary cancer oncologist team, who have no answers regarding the treatment received.

Update + washing machine

2011-06-25T22:41:20Z

So we had our meeting with the macmillian nurse, don't get me wrong, I am sure when the time comes they will be quite helpful. However she introduced herself and asked what we needed. Will I don't know, I thought they would assess David and tell us what they had to offer. Anyway she arranged a physio / ocupational health assessment for David (he was on 2mg of the dex steriods - see below) and I found the OH person quite patronising - I just did not like her manerasism (not a complaint she can't help how she is I surpose). Anyway they were able to offer David a couple of walking frames (the ones with wheels at the front) which will come in useful later on. They have also arranged to come to the house (the assessment was done at the hospice) and see what else they can help with.
The Macmillian nurse also arranged for a wheelchair loan for us, so we can take David out more.

So David was taking 2 1/2 mg of Dex Steriods, and he felt extreamly well, he decided this meant the amount was wrong, I suggested that we should make the most of it. He wanted to reduce has steriods to 1 1/2 mg we settled on reducing to 2mg after 2 days he started to feel sick and floaty again.
On the third day he agreed to increase his steriods back up, however the phisio appointment was in a couple of days so we decided to wait until after that and then increase up to 2 1/2 mg.
But now he doesn't feel as great as he did before, and we has had to increase up to 3mg to feel reasonable. I am now pushing for 4mg, as I still want to try and do some more things with him and the children, and as the macmillian nurse said she sees no reason why he can't go upto 4mg (as long as we have sufficient tablets - which we do) it's all about quality of life now and why shouldn't he feel great?
The only thing she did say was that generally on 8mg plus side effects such as swelling of the face may start to occur.

Today I put the washing machine on a quick wash for the kids swimming kits (this I do every week) and after it had been running a short while water started pouring out the front of the machine from the detergent drawer.
I tried and couldn't get the front flap for the drain pipe and pump filter open, and felt so hopeless - what will I do if something like this happens when David isn't around to help me.
Anyway after a good cry, I got David to come and help, he sprayed WD40 into it, and this helped to free it and open it.
I cleaned out the pump, and the detergent draw and touch wood everthing seems to be running fine now. Which is a relief as I geberally run the machine at least once if not twice a day.

Anyway thats enough from me now, thank you for reading.

Casulty - the TV programme

2011-06-25T15:25:04Z

Did anyone see last Saturdays episode of Casulty?

Sorry, due to my husbands inability to not fiddle, I have just watched it on iplayer to catch up before tonights episode. I paused the tele while I put the kids to bed and rather than leaving the remote control he picked it up and cancelled the delay. Apparently he was just trying to help!

There was a woman who had fallen asleep on the bus on her way home from shopping and was still asleep when the bus got to the depot, as they couldn't wake her they called an ambulance. It turned out her husband had cancer, he too was later admitted to hospital, and they were both taken home as that was what he wanted.

I know exactly how that woman feels, regarding being exhausted, I feel like I could shut my eyes and sleep for a week, but I can't because as soon as I close my eyes I get woken up during the day, and at night it seems like I've just gotten to sleep when the alarm starts sounding time to get up. The time lapsed tells me that 8 hours have passed since I closed my eyes. The problem is I am about half her age.

Treading water

2011-06-14T23:59:12Z

I feel like we are just treading water now.

I can't make plans for anything more than a couple of weeks ahead, because I don't know if we would be able to carry them out. Our daughter is singing with something for school and we need to buy tickets, do I or don't I get tickets. How quickly will David deteriate.

David thinks we should get a starlift, but I don't know if we would get the use out of it.

Also it could take 3-4 weeks before it gets installed, he dosen't really need it at the moment, but he wants it there ready for when and if he needs it, what if he dosen't get much worser and therefore dosen't need /use it. What if when he deteriotes he takes to his bed and dosen't want/ is unable to come down stairs.

I wish someone could say an approximate date, just like when you are pregnant and they tell you the date you are due - mind you all 3 of mine were 2 weeks late. At least we would have an idea and something to work towards.

I wish I knew what was around the corner, what to expect, how quickly David will deteriote and what signs to look for.

I hate not knowing, and that it's not until you have been through it that you find out what to expect.

I feel like David is the only person to have this type of cancer / senario, yet I know that others must have been through this, others must have had secondary brain cancer after recovering from the primary cancer. Surely we are not alone, someone must be able to say "David will appear fine and one day won't wake up" or "David will appear fine, but one day will wake with his headache returning and about a week (or whatever) will be gone".

I want to know so I know what to expect, is that so wrong? It certainly would appear so when talking to doctors/consultants etc.

Did anyone else with a terminal brain tumour purchase / hire a stairlift or wish they had but left it to late?