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clair2305
Posts: 154
Joined: Thu Aug 13, 2009 1:43 pm

Clair and Blue - new thread

Postby clair2305 » Wed Aug 11, 2010 9:54 am

Hi all

well, we've had our week away in Southport and to say it was wet is an understatement. Not sure if any of you saw the news about the flooding in the North West. It started raining when we arrived on the Monday and didn't stop till the Wednesday (which was a lovely day). Just as well we had a caravan as otherwise it would have meant sitting around in a hotel room. It was that wet the brolly was useless except for keeping your head dry! Blue thought we'd end up being rescued from the caravan site by the fire brigade on the back of a digger :lol:

Oh well, it was nice to get away and although it meant we couldn't do all the things we wanted to do in Liverpool we did go on the Yellow Duck Marina, but nothing else, it was too wet.

Anyway, Blue has finally had his tooth out that broke last year! That was like a comedy of errors but not funny at all, he had to go in the night before and no one seemed to know if he was having eye, plastic or facial surgery!!! I thought I was gonna collect him n he had a different face. There was also confusion about his MST as two doctors were saying he could have it before he went down and another saying no, lucky Blue put his foot down, but then the nurse was going to give him Severdol (the top up tablet form)....scary really. Anyway, tooth gone and all ok.

Now, as Ellie has been asking too, Blue is in pain again. I think following the radiotherapy he got about a weeks of being ok then he gets a week of feeling terrible. He's had his MST increased again to 180mg twice a day and it worked for a few days and now he is in pain again. He was feeling sick and was sick once, our doctor visited, increased the MST and prescribed two other anti sickness tablets that seem to be working. He tried the Severdol tablets again as he absolutely hates the oramorph, said the taste lingers in his mouth for hours afterwards, but to be honest I've been writing down when he has them and it's probably once or twice a day and yesterday he told me he was feeling sick again, which is what happened the last time he had them.

I've put a call into our GP this morning and am waiting for him to call back. I really think he needs a change of painkiller. As well as taking his MST and the top up he's having paracetamol 4 times a day and ibuprufen 3 times a day and to be honest he is miserable. He's also taking to having hot water bottles again and an early morning bath!

Yesterday at the hospital his consultant said he should see the palliative care doctor again, saying no one should be in pain. Blue's response was that he can cope, describing it as being stiff in the mornings. Myself and the doctor just made a face and the doctor said he shouldn't just cope. I tried to discuss this later with Blue to which his response was (language modified!) "he don't know what he's talking about, he's talking toot, they can't control my pain" I said I think we should see the doctor at the hospice again to which Blue said "not this week we have a busy week"- we have his other son here, his parent were here yesterday evening and my parents are coming down today for a few days - to be honest, my mum would go mad if we could get an appointment and only didn't take it because of her visit. So I will be ringing the mac nurse when I've finished this post. I think I have to put my foot down, with Blue and the nurses, I'm gonna tell them exactly what he said.

I don't think he's pain has been helped by the fact that Monday he fell off a garden chair. Well as he went to sit on it, it broke and he said he jarred himself stopping himself from falling.

I don't think the radiotherapy worked on his back, but it may work on his shoulder and he is also rubbing his back further down than where the tattoo mark from the previous radiotherapy was given, which obviously scares me.

He's also a bit constipated again, so need to discuss that.

I aint waiting till Monday to see someone, he is bloody miserable as I'm sure many of you have felt or seen your partners, he cannot function really. Oh yeah, he can drive and you know get bathed and dressed, but he can't enjoy himself/having any social life. It's almost like it was before he was diagnosed and I can't see my husband like that. I'm fed up of him telling me he is ok when I know he's not, of him saying they can't control his pain and of him saying he just feels a bit tight or stiff. He never felt like this before PC, when he was working and as a shop fitter it was very physical work and he never suffered with back pain at all, so I'm not having it now (roar, grrrr, :) )

Off I go to make phone calls.....

Anyway, how are you all......Ellie n Brian, Juliana, Nicki n Ted

Clair

Nardobd
Posts: 479
Joined: Sat Feb 14, 2009 6:25 pm

Re: Clair and Blue - new thread

Postby Nardobd » Wed Aug 11, 2010 7:29 pm

Hi Clair

Good for you - Ted tells everyone he's ok when he's not really and it drives me to distraction. How can they expect people to help control the symptoms if they deny having them!?! Ted tells me that as much as anything he doesn't want to worry me and therefore doesn't speak out but, as I said to him, I know anyway - you can't love someone so much without knowing when they're in pain.

I hope you've managed to get an early appointment for Blue and that something gets sorted. Let us know how you're getting on.

I'll update about Ted in a different thread - don't want to hijack this one.

Nicki x

Ellie
Posts: 302
Joined: Thu Sep 04, 2008 11:03 pm

Re: Clair and Blue - new thread

Postby Ellie » Wed Aug 11, 2010 10:53 pm

Hi again Clair

Sorry to hear you had a very wet holiday. What a shame! We've always been lucky when we've been to Liverpool - the sun has shone and made things look lovely, especially those 3 beautiful buildings on the riverfront. I think the Liver building is just fabulous!

Looks like Blue and Brian are going through similar situations right now, though. Nothing but pain for them, which is so hard for all of us to bear.

Brian has still been waking up at 6am in pain, even though he has the patches on. He thinks it's because he's lying on his back/shoulders and putting pressure on the affected areas. Maybe that's what Blue means by being stiff in the mornings. Does it ease off when he's up and about? Brian has also lost a lot of weight and maybe putting pressure on those aeas, where the natural padding has been lost, is pressing on the bones more.

Has Blue tried the Fentanyl patches at all? Brian used to complain about the aftertaste of Oramorph, too. Said it left a horrible metallic taste in his mouth. He's also had some sickness too and has had probs with constipation ever since his whipple 2 years ago. All these things can drag them down, can't they? I know exactly how you must feel and what you're going through seeing it all, too. Let's hope the docs CAN sort Blue's pain out quickly. There must be other things they can try.

As I said on my thread, it's been a much better day for Brian, so here's hoping Blue's next radiotherapy will help ease things and the other problems are ironed out too.

Keep in touch, if you have time.

Love
Ellie
xx

clair2305
Posts: 154
Joined: Thu Aug 13, 2009 1:43 pm

Re: Clair and Blue - new thread

Postby clair2305 » Wed Aug 25, 2010 1:52 pm

Hi all

thanks for your replies and here's my update. Will try to keep it short but let's be honest, it's not really me is it :lol:

Well, I got on the phone to the Mac Nurse and GP. I told them exactly what Blue said about what his consultant had said, just took out the expletives. Long and short of it is that Blue's MST has been increased to 300mg twice a day. He had an appointment with the palliative doctor on 13th August. So MST at 300 twice a day, changed his top up to Oxynorm tablets and as it is stronger that MST he only has to have 50mg, as opposed to 100mg of Oramorph.

She also changed the ibprufen to Naproxen 500mg twice a day and added another Metoclopramide to 4 times a day. To help the constipation she increased his laxatives to two Codanthramer strong twice a day (up from 1 at night) and 2x100mg of sodium docusate 3 times a day (up from 100mg twice a day). And I was to ring her after the weekend.

Well, obviously no real effect but on the Monday, the doctor said to continue which we did. On the Saturday had a micralax with no real effect and so this Monday rang again and spoke to the Mac nurse. Blue doesn't feel constipated but it is affecting his appetite again and he has said he is concerned about this because he just feels like he has no appetite. He has also been getting twitches again and it appears that is from the metoclopramide, so that has been reduced back to 3 times a day.

When I spoke to the Mac nurse on Monday she was very sympathetic, even saying herself that they seem to get Blue okay for a few days and then it all starts again! (my explanation mark not hers).

So, in order to tackle the constipation which they hope will help the appetite they have prescribed Milpar. There was a bit of toing and froing because we were told that it is not available on the NHS and it would be a private prescription, which was fine with us but when I rang the surgery to check the prescription was ready it appeared that this is hard to get even off NHS and so Blue was given the generic version of it (liquid paraffin and magnesium hydroxide). I did check on the internet and it seems the same, Milpar is made by Seven Seas (seems strange it's hard to get) and it had the same ingredients listed. Oh well, no effect as yet and Blue has said this morning he feels full up and that was before his orange for breakfast!

So I have to ring the Mac nurse back on Friday....let's hope there's movement by then!

Blue also had radiotherapy yesterday on his shoulder, so fingers crossed that works. He is very tired today, it was a long day yesterday with lots of sitting around, which he can't do.

On the whole since the increase in MST he has been ok. He has at times had to have the Oxynorm top up but he is less resistant to it, as with the Oramorph and he did have it 3 times yesterday but I put that down to the hospital, sitting around and having to have his body manipulated and stay still whilst having radiotherapy.

His consultant is looking into the Abraxane, trying to find out more information. I've also emailed Abraxis Bioscience, the manufacturer, at an email address advertised on their website for Abraxane in Europe, but I've had no response. I've sent two emails???? Does anyone have any reliable email address for them?

Also, what do people know about Gamma/Cyberknife? This may be an old question, it's just that Blue's mum has just rang and a friend of hers (a cancer patient) was talking to her about the new GammaKnife machine at Barts. It's a private treatment it seems and she is trying to get on it, but told Blue's mum that she met a man with pancreatic cancer at the hospital who said he had been on a trial with it and that he had been cured! Now I know he could not have been an advanced patient but who knows. I've obviously searched the net but it appears the GammaKnife is for brain tumours (centre opened by Martin Kemp) and I've not been able to find much else and certainly no PC trials using gamma or cyberknife.

How is everyone else? Please let us know.

Alas, short post is a long one :oops: :lol: :oops:

Ellie
Posts: 302
Joined: Thu Sep 04, 2008 11:03 pm

Re: Clair and Blue - new thread

Postby Ellie » Wed Aug 25, 2010 10:23 pm

Hi Clair

I, for one, don't find your posts too long. I'm following them with interest because Blue seems to be having so many similar problems to Brian and I can compare what medications they are both having. Glad to hear the Oxynorm is working better for him than Oramorph.

Brian, too, has a problem with constipation and that causes him a lot of stomach pain going back to his post whipple days. I've just read out a bit of your post to him and told him to ask his doctor about increasing his co-danthramer, as Brian also feels full if he is constipated and loses his appetite. A short course of steroids did help with that, but he's off them now so will have to see how long the benefits last.

Hope the radiotherapy helps Blue's shoulder in a week or so. We are waiting to hear if Brian can have a second lot of radiotherapy, as he still gets pain in his shoulders, too. We also know all about sitting around in hospitals - we've just spent 5 hours in A&E today after our GP suspected that pain in Brian's leg was a (DVT). (I will post more on this in my own thread).

Anyway, it sounds as if you are still fighting hard and getting things done. Keep up the good work!

Love
Ellie
xx

clair2305
Posts: 154
Joined: Thu Aug 13, 2009 1:43 pm

Re: Clair and Blue - new thread

Postby clair2305 » Sun Aug 29, 2010 9:01 pm

Just a quickie

does ANYONE have any help for constipation. I am at the end of my tether now.....my previous post details Blue's medicines for constipation but this has been going on for almost 3 weeks now and to be honest I'm a bit peeved at the professionals. Blue will not have movicol, as detailed in previous posts, it really didn't have effect and also gave him terrible stomach cramps, but it seems to be the wonder drug apparently! When I said "i want something that he only has to look at the box and he's running to the loo" i was told it was movicol.....I don't think so. Blue can't be the only patient for which movicol doesn't work.

As well as the medicines, he also tried syrup of figs to no avail. There's lots of belly rumbling, burping and wind but alas it doesn't come to fruition (spelt right???)

I've had enough, he's in pain, appetite terrible, i feel useless and.....

Thanks

Clair

lynbo
Posts: 269
Joined: Sat Aug 28, 2010 6:23 pm

Re: Clair and Blue - new thread movicol - rubbish

Postby lynbo » Sun Aug 29, 2010 10:00 pm

Hello

I have just joined here in the hope I can help someone, my husband passed away last monday (23rd aug) he was 39. He was diagnosed on 30th of June 2010, and from that day I gave him all his medication, had NO macmillan nurse, no district nurse, and rubbish help from hospital. I kept a book of all meds with time and date and effectivness. I know by reading the threads all the signs and symptoms, and everyone is different, but I want to help
I was advised to give my Andy movicol ,7 sachets in 1 day, and 3 days later - nothing?? he also had co danthramer, but nothing? and suppositries, nothing, as the compaction is usually further up the body.
2 things you can do.
1 ask for co danthrusate 50/60 capsules, and open them up and put contents into small amount of water (he wont taste it) and it means the contents get into action quicker. My Andy had 2 capsules on morn, 2 on night.
or
ask for a scan at hospital, he may have a blocked bile duct? it can be sorted, dont worry, but its the last thing (in my experience) they will look at, as its all time and money.
I have no faith in NHS (as you may tell) hope it helps
much love
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

lynbo
Posts: 269
Joined: Sat Aug 28, 2010 6:23 pm

Re: Clair and Blue - new thread

Postby lynbo » Tue Aug 31, 2010 11:50 am

Hi
My husband too was put on a saline drip, and this was a result of him being constipated, although we didnt know at the time, as we went to hospital for them to deal with his stent, and when they done the routine tests, they said he needed fluids.
We tried all sorts as I have said, but to no avail, until, he was given the saline drip, and then managed a little food, which, in turn, helped him go to the toilet.
So, in reply to Clair, this is why I suggested the hospital, as the compaction may be further up, and as the cancer makes you sweat - you then lose fluids, which just adds to the constipation, and it becomes painful and problematic.
Isnt it a shame that there is not more help?
I have found this forum a help, if that sounds right? I just want to share what knowledge I have, and try and help anyone anyway I can.
xxxxxxxx

Ellie
Posts: 302
Joined: Thu Sep 04, 2008 11:03 pm

Re: Clair and Blue - new thread

Postby Ellie » Tue Sep 07, 2010 5:38 pm

Hi Clair

Just wondering how things are this week? Has Blue had any relief from the radiotherapy on his shoulder yet? Has anything worked for his constipation? I have to thank you for mentioning that codanthramer comes in a strong version because Brian was only on the ordinary one and he has had good results with the strong. We didn't even know about it until you mentioned it on here, so thank you for that.

Hope you've had an improvement somewhere alone the line and you are feeling a bit more positive. You sounded very down and frustrated in your last post.

Sending you love and hugs,

Ellie
xxx

clair2305
Posts: 154
Joined: Thu Aug 13, 2009 1:43 pm

Re: Clair and Blue - new thread

Postby clair2305 » Mon Sep 27, 2010 9:52 am

Oh well, where do I start????

Following my Blue deteriorated over the following week after the bank holiday. He was barely eating, was in terrible pain and although not feeling like he needed to go to the toilet, there was still no bowel action.

He was admitted to hospital on 6th September, after I rang the oncology ward. He had lost 8kg in 3 weeks, which although I could tell he had lost weight and we'd already spoken about him having Fortisips again, just as a top up, we were surprised by how much. He was also dehydrated, again we were surprised as water was about the only thing he was drinking and they suspected he had a urine infection. He had antibiotics and was put on a saline drip for 5 days. I felt responsible for letting it go on so long and that I should have got Blue to hospital sooner, I was apologising, but he said that we both had to take some responsibility (as well as the professionals), he didn't want to go to hospital neither.

They did an xray which showed no obstruction and then they did a CT scan which was not good news. The tumour in the pancreas is back up to almost its original size, the T11 spinal bone has progressed and if that wasn't enough for us, the disease has spread to the lungs! He spent the week in hospital, had another nerve block done on 10th September. His Oxycontin is up to 500mg twice a day and still he is in pain, as well as being very breathless. He spent a couple of days at the hospice, but did no like it.....there was no bath, well there was baths but they were 'assisted' which obviously he doesn't want or need.

So now he is home. He is on 12mg of Dexamethasone a day which is really having little effect. He was having a couple of Fortisips a day and maybe breakfast but to be honest, even the Fortisips seem to have gone out the window. His calorie intake for yesterday was about 400 calories!!! I've tried to talk to him saying that if he doesn't eat one of three things will happen - hospitalisation, hospice or feeding tube, all of which I know he doesn't want. He said he is trying but he just has no appetite and I've said I'm not trying to bully him I just want him to be well.

Whilst in hospital it was decided amongst the palliative care team there that we were not being supported properly by Blue's mac nurse. They asked us how many times we'd seen her, what contact was normally like and what had been happening over the last month. That really gave us open opprtunity to say our concerns, only telephone contact and just ramping up of the laxatives. It was decided that between the palliative care team at the hospital, the mac nurse, the hospice and our GP that they would all support us.

We went for an appointment with the palliative care doctor last Tuesday who spoke about reducing Blue's oxycontin back down (as Blue felt the increase from 160mg twice a day to 500 mg twice daily in the week in hospital was not helping). They said they also wanted to start Gabapentin and are also talking about other medications like ketamine and methadone! They gave Blue a handheld fan (3 blades) to help with his breathlessness (there was a clinical study) and also gave him some other information and a CD to listen to to help with breathlessness. They told me to decrease the Oxycontin to 400mg then 300mg adding in 100mg of Gabapentin at night and that they would ring on Thursday. They did ring and in the 3 minute conversation with Blue thought he was ok and said his GP would visit on Friday. Well he spent most of Thursday night in the bath. The macmillan nurse visited on Friday and has kind of gone some way towards redeeming herself. She could see Blue asleep (as he could barely stay awake) and could see what happens (the twitching and dreaming). She thought the twitching, well jerking could actually trigger pain. She got on the fone to the palliative care doctor to see what was their plan and that's wen everything went a bit crazy. They didn't want to increase the gabapentin anymore because he was drowsy and that's a side effect, she was saying to them "he's spent the night in the bath he can barely stay awake" and other things like he's in pain. And that's one of the things, is he tired because of the side effects of medication or because he is bloody knackered?!?!?! They thought he might be toxic, which the mac nurse and GP disagreed with, then there was discussion about possible raised calcium levels, so emergency bloods were taken and send off to the hospital at 2:30 pm (the time will become relevant). The GP visited and told me to increase the Oxycontin back to 400mg and then 500 mg as he said obviously it was working. The GP and mac nurse were also very surprised that the palliative care doctor said she could convert Blue to ketamine without admission to hospital and when they explained why we understood. Apparently some people develop serious breathing difficulties and if in hospital they can see this and also have the drugs to reverse it, so I think if ketamine is the way then as much as Blue does not want to go into the hospital or hospice it may be better. We find it hard to tell if he's drowsy because of being knackered, lack of sleep or side effects of tablets, how will we know the difference between his breathing!!!

So a bed was reserved at the hospice just in case the calcium levels were raised. A 5:30 pm there was still no news (hospital only 30 mins away). Our GP rang the hospital and they were just about to start testing it and it would take another hour. He asked them to ring the out of hours GP service if the calcium levels were raised, also giving them our number to pass on so the out of hours could ring us. We heard nothing so assumed no new was good news.

On Sunday we had the out of hours GP doctor out to Blue. He had been coughing up sputum for the past few weeks but as it was clear no one was concerned and also the CT scan said there was fluid on one of the lungs, but not enough to be drained. But on Sunday morning it changed colour, so the doctor that came out prescribed Amoxicilling 250mg antibiotics 3 times a day and said to increase the Gabapentin to 200mg at night.

So does anyone else get fed up of conflicting messages from the professionals? I know I'm gonna snap soon.....that straw is feeling mighty heavy!

We have an appointment Tuesday (tomorrow) with Blue oncologist and are talking about Abraxane. Obviously Blue needs to be fitter for this. The palliative care doctors are also going to tag on the end of this appointment. I'm a bit concerned about this as I don't want the oncologist's time sabotaged. So, as I knew the dietician would also catch up with him, I rang her and said would it be helpful if we came 20 minutes early so he can talk with her beforehand, so at least that's one less person in the room and also we get some 1:1 with the dietician. If the palliative care doctor interuppts or hinders our oncologists time I will be asking her to leave and see us afterwards.

Over the weekend I've tried to talk to Blue and tried to remain positive, saying we need to get some weight on him before any further treatment. I was also emailing Emma who has offered to give me some info on her father's experience with Abraxane. Blue, forever the realist, said "you know I'm really ill don't you" which obviously started me off and also said he doesn't think he will be well enough for Abraxane or any further treatment as well as that he loves me and that we have no arugment with each other. I've said I willlook after him to which his response was "it's not your job", I think he is worried it be too hard for me. Well it will, but he's my husband, I love him and I already said I would look after him, he wants to stay at home and that's what will happen. So after a couple of hourse of silence and of him saying "let's watch x factor" to change the subject, I just told him that I will look after him, no ifs or buts and no discussion about it.

This pain has got to be controlled. Last week I was feeling ok after the appointment with the palliative care doctor. As much as it would be nice for them to say there's a bunch of pills you will be fine by tomorrow, I know that doing it over the next 2/3 weeks may be better, but to be honest Blue has had uncontrolled pain since May and the spread to the spine and it's just not good enough. Any ideas?

Blue told the Mac nurse that at best his pain is a 2/3 but she said she suspected that his 2/3 was probably someone else's 6/7 and that it would be nie if we could get it to a 1. Blue told her he doesn't want to go out. He's too scared because of his breathing. The other day we went for a drive and he said 'let's stretch our legs' and after about 10 steps he said no let's get back in the car.

We also have a OT/physio coming to see us on Wednesday to see about help with breathlessness and any other aids, to help blue be comfortable in bed and on the settee/chair.

Blue opened his bowels on 5th September but not much. But he hasn't been since and although he doesn't feel like he wants to go, he said he feels full.

So I'm really unhappy, angry and a million other emotions. And now I'm finding it hard to be positive. I'm scared too. Everything I love and want is being taken away from me. I know this statement is selfish, because it's physically happening to Blue but I want him here for a long time.

Does anyone one else have spread to the lungs? Can u give me your experiences, try and gee me up a bit.

Anyone have it in the pancreas, liver, spine, shoulder and lungs? Oh n the CT scan report on Blue's discharge summary it says "there are two small lesions in the left liver", well this is an improvement from the original and last scans.....talk about give with one hand and take away with the other!!!

It's all bloody cr*p aint it?

Clair

Ellie
Posts: 302
Joined: Thu Sep 04, 2008 11:03 pm

Re: Clair and Blue - new thread

Postby Ellie » Mon Sep 27, 2010 5:15 pm

Oh Clair, what an awful time you have been, and are still going through. I wondered why you hadn't been posting much and now I can see why! My heart goes out to you so very, very much and I too would be so angry and scared and upset at what has been happening. I sometimes feel Brian is just one step behind Blue and can really imagine just what a dreadful time you are having.

I am so sorry to hear that there has been bad news on the spread, especially to his lungs. Being breathless must be making things so much harder and is one more worry, on top of everything else. It is so frightening to see someone in pain and being so ill when you are at home with them. The only positive thing that seems to have happened is that you now have the full attention of all the relevant people involved in Blue's care. Trouble is, as you say, you then start to get conflicting advice! I really cannot begin to advise you what to do. All I will say is that Brian came home from the hospice today and after having spent 4 nights there, he is feeling so much better. His pain is now only affecting him first thing in the morning (after lying on his spine all night) and sometimes late evening, when I suppose his body is tired, but it's nothing like it was. Would the hospice not be able to help by getting him monitored 24 hours a day, until they can get everything stabilised? I know you don't want to see him go in there and obviously he won't want to go in, but if the staff are anything like they are in ours, they will be there to do their best to see that he gets the best care to make him more comfortable. One he's more stable, then it should be easier for you to maintain his care at home, where you both want him to be.

Maybe after tomorrow, when you've seen everyone, things will get sorted out a bit more and seem a bit clearer. I hope all your appointments go well and there is something that can be done for you both. In the meantime, I imagine you are going through hell and just hope that you will look after yourself, as well as Blue.

Wish I could do or say more to help you, but I am no expert myself. I can only send you my very best wishes and support and sincerely hope that things will be more settled very soon.

Thinking of you and sending love and hugs.

Ellie
xx

clair2305
Posts: 154
Joined: Thu Aug 13, 2009 1:43 pm

Re: Clair and Blue - new thread

Postby clair2305 » Mon Sep 27, 2010 6:31 pm

Oh Ellie

thanks for your reply. Yes, although I'm dreading tomorrow, at least we hopefully will get a clearer picture.

And your response about Brian being in pain first thing and last thing is exactly like Blue. He never used to lay on his back in bed but since having PC, he cannot get comfortable lying on his side. We also have the OT/physio coming out on Wednesday, so hopefully they can help with this and also with the breathlessness.

I'll update what happens tomorrow.

Thanks for your support.

CLair

Nardobd
Posts: 479
Joined: Sat Feb 14, 2009 6:25 pm

Re: Clair and Blue - new thread

Postby Nardobd » Mon Sep 27, 2010 6:50 pm

Oh Clair what a terrible time you've both been having. It's a terrible strain, I know, to not only have to bear the news but to try to keep Blue up and positive too. Add to that the worry abvout his losing weight and you must feel like you're drowning at times!

Nevertheless, of course you will continue to look after him - it's what we all do. I know that it must feel like you're bullying him at times but I'm sure Blue doesn't see it that way and I know you well enough to say that I'm sure you're being as thoughtful and tactful as anyone can be. You've done a sterling job so far and I know that you'll carry on being a fantastic and loving support to him.

Yes, we have had vastly conflicting views from different doctors in the past. I got hold of Ted's nurse specialist and she liaised with all of the doctors for me then gave me the consensus of opinion. From what she said each doctor's opinion is based not only on viewing it from their own speciality perspective but also from their training and whether they keep up to date with research and news. I got her to take on this liaison role by insisting that I wanted a round-table meeting with all of the doctors involved - obviously I had to be a bit demanding but it's so very important to ensure that you and Blue have a clear picture. If you can't get what you need tomorrow you might want to think about doing the same.

Of course you're scared, angry, frustrated, angry, depressed and lonely. I'd be amazed if you weren't. This is happening to both of you - just from different perspectives and it is so agonising to see the person you love so much in terrible pain. What I can say is that you have a bunch of friends who are only too keen to be here for you. No judgements, no negativity - we just want to help as much as we can, albeit from a distance.

If you'd like my personal email just post and I'd be happy to arrange that so you can write direct if you wish.

Look after yourself as well as Blue.

Love
Nicki xx

lynbo
Posts: 269
Joined: Sat Aug 28, 2010 6:23 pm

Re: Clair and Blue - new thread

Postby lynbo » Mon Sep 27, 2010 11:41 pm

Clair
I read your last post with a tear in my eye, I know how you feel, and Blue sounds just like my Andy was, very proud and just getting on with things when you feel so helpless, but, believe me you are doing a GREAT job.
Just getting through day to day is an acheivement. Gabapentin is for nerve damage, and knocks you for 6, Andy was on 600mg a day, and like Blue could not eat so he was aslep a lot, also twitching.
Ask them for HALOPERIDOL 1.5mg? mention to the mac nurse, it stops twitching and calms them down, it is sometimes used for epilepsy.
I cared for my Andy at home, as he hated the hosp and also we didnt get any macmillan nurses or hospice, and it is amazing what you are capable of, I can tell by your posts you are doing what you can, and Blue will know and love you for that.
The cancer makes them tired and sleepy so its not just medication.
I have Andy's notes from the GP now, and when I am stronger I am going to go through them and have another meeting with them, so, yes, I do know what you mean about conflicting messages from the professionals, my advice - kick off and dont stop till you get what you deserve, its the only way.
much love
xxxxxxxxxxxxxxxxxxxx

Juliana
Posts: 178
Joined: Thu Sep 25, 2008 1:36 pm

Re: Clair and Blue - new thread

Postby Juliana » Sun Oct 03, 2010 11:49 pm

Hi Claire,
Feeling it for you sweetie and for Blue.

I will keep it short - as its late and I find it hard to gee myself up to post on the site atm.

I have it in the lungs, multiple tumors in both. When I was told, I was shocked, and for 1yr I felt no difference in lung usage, no pain etc - I would never have thought the cancer was there.

Lately my chest wheezes and crackles, I too spit up sputum but not often, I cant seem to shift it - mine was clear too. But they gave me antibiotics incase. I did have a pain in the left cavity, almost like a stitch but that went with the course of antibiotics. Currently the wheezing has increased, it wakes me in the night as my chest almost makes a miaowing sound, and then crackles. Today I feel like I have a thin spear through my left hand chest cavity, its stopping me from breathing deep and I'm a bit scared.
The fentanyl patches and tablets dont seem to help any, may try my morphine.
I've also just completed 2 cycles of capecitabine, side effects for me has been chronic diarrhea with terrible abdominal ache, but nothing else (apart from the exhaustion). However as I am also fighting cachexia - its making things difficult. (cachexia brings with it depression....which is horrible and life wasting)

My urine is extremely dark - so they suspect disease in the liver. I guess we will know more after 3rd capecitabine cycle where they should scan me.
I dont feel any pain in the liver though.

I am also under a great deal of stress with my inlaws. Too much to go into detail, but 9 years of abuse from the MiL and hoping things would improve since my diagnosis.....it just gets worse. I'm sure this is adding to my exhaustion and pain atm.

Anyway, for a year my lungs have felt normal - if thats of any help x

Blue really needs to try and eat. Small amounts of high calorie/protein to keep his body working. What are his fav foods? Start with small amounts, even if he only manages a few mouthfuls....every little helps.

Juliana x