ITS BEEN A WHILE--THE LOVE OF MY LIFE HAS CANCER

[knutsford4]

Hi all, it's been quite a while since I've been on here, my Allen has got worse we are waiting on a His scan which is 1/7/2015 he has lost quite a lot of weight has severe back pain and I'm coming to terms with the chance that this hateful decease has spread inside him, he was able to get 11 cycles of Oxiplatin and Gempcisde (sorry about the spelling)

[Didge]

Martine, I feel for you. My fella is in exactly the same position, pain, weight loss etc and we got the bad news a week ago today that it had spread throughout his liver - but still nowhere else after all this time - my god, his surgeon was good as it was expected to come back in the original place as he had local lymph nodes involved! However, there have been times before when we had dreaded bad news and it had not been as bad as we expected so I do hope this is the same for you. This awful cancer is so terrible and I hope the news is not as bad as you expect. Seems especially sad to be dealing with this at the beginning of summer, for some reason! We are all here for you, Didge x

[sandraW]

Hi Martine,

Sorry Allen is not doing to well at the moment, lets hope as Didge says the results of the scan are not as bad as you are expecting them to be.

This bloody disease is relentless, we think we are winning or at least maintaining the status quo, then it swamps us.

Sending you strength and love, take care sandax xx

[knutsford4]

Thanks everyone, Allen was put back on Volteral, which has 90% taken his pain away, he is still on MST 45mg AM/PM which we have always said didn't work, from last Thursday he has been zoned out a lot of the day, (but still walking the mountain with the dog) nearly to prove a point, so from Saturday has cut back 10 mg of his MST 5am/5pm, seeing GP Wednesday morning and just recieved his appointment for results 27 July, 4 weeks after his scan and 4 weeks of hell for me watching my once big strong husband fading away in front of me, hospice nurse convinced his cancer has spread, sometimes I think yes and other times im like no way he's doing really well, so feeling lost now, and I cry at the smallest thing,

Sorry for going on xx

[Didge]

You go on as much as you like! I am also in hell at the moment, my fella has gone into hospice today but more than 70 miles from me so I can't easily visit him like I could if he was near me. He is still hoping to make our birthday bash this weekend but he too has been pretty out of it with the drugs, which is better than having pain, I know. Hope your husband keeps going for a while longer. If he is still walking the dog, that is very good! Didge xx

[kittycat]

I think we all need to let off steam at some time. This dreadful disease is unrelenting and all we can do is our best for those we love. I know how you feel regarding crying - every song on the radio seems to have a memory and thoughts never seem far away from the darker side of things but we have to stay strong. Go on as much as you like, we all know what it's like and are with you all the way. Hope things improve for you soon. Take care.

Didge, so sorry to hear your news, let's hope he rallies round for the weekend. Take care.

Sue

[knutsford4]

Thanks Didge and kittykat

So sorry to here your other half is in hospital Didge, we r lucky that way in belfast we have 3 hospitals within a 1 mile of us,

Allen has decided to go back up the 10 mg of MST as his pain came back bad, so back to the drawing board as to why he is so zoned out, just watching him skin and bones is killing me, but I'm trying to put the lid back on the box, as there's always someone worse of the you, I'm so angry I feel after 34 years of being together and never having highs or lows and talking was the key to our happiness, Cancer has came between us

[knutsford4]

Hi it's me again, finding it very hard to sleep, but need some advice

My Allen has been very sleepy and zoned out, we reduced his MST by 10mg Sat-Mon but his pain came back then we realised that he upped his anti sickness last week to 3 a day, so from yesterday he's back to 1 a day,

We r gropping about in the dark playing with the meds, to see what the problem is, now in saying this Allen is still active around the garden he won't let it get to him,

Has any one experienced this, would speak to hospice nurse, who is so nice, but I feel she believes Allens cancer has spread (results not for another 12 days) so I have lost a bit of confidence in her

Getting more advice of this site, which for me is a life line

Thank you xx

[Didge]

It's really hard to get the balance of meds right and trial and error is needed. We have found that opiates do not do much for the pain (although certainly help to some extent) but gabapentine seemed to help enormously at first as I believe it is a nerve blocker and the liver tumour pressing on nerves was always a problem. Steroids can help to reduce inflammation too which can reduce pain. Sometimes you have to ask about different pain meds as they seem to be fixated on opiates and although they play a big part, they are not the whole picture. Hope you get the balance right! x

[sandraW]

Hi Martine,

Sorry to hear Allan is struggling with pain, perhaps you could ring the nurses on here, for some advice, they are very knowledgeable, if you don't want to talk to your own nurse.

Its good that he can still get out in the garden, he will feel as though he us achieving something, Trevor was much the same, wasn't giving in.

I hope you get it sorted, have you tried paracetamol alongside the morphine, as long as it fits in with everything else he is taking of course, Trevor found it helped a lot. take care sandrax

[knutsford4]

Thanks everyone,

Allen had a great day yesterday, the doc put him on Creon, after I showed her the email received from Chris the nurse from here to her, I think psychologically he will get better now, he spent the day painting the outside of the house, and the affect ripples through the house, everyone in great form, he's even talking that if he gets his appetite back he was to go on a cruise, so fingers crossed he starts eating and we even get a wee bit of my Allen back.

Love talking to all of you. Xxx

[sandraW]

Thats good news, just keep on making the most of every day and lets hope you get that cruise,sandrax xx

[kittycat]

That's good news and he is definitely thinking positively, especially with a possible cruise, so that's a step in right direction and the creons should help his appetite too. My husband takes them and his appetite is good and although he doesn't put much weight on, at least he's stable. Good luck

Sue

[Sueoliver]

Hi Sue ,

I am glad Allen had a better day those days are ones to treasure! A cruise is something to really look forward to and I hope you manage it. I am sure my Mum has kept going because she is determined to be at her Granddaughters wedding on the 29th August.

Hope things keep improving.

Love Sue x

[knutsford4]

Hi everyone

Got Allen's results on Monday and not good, they said that his tumour is back up to 5x4, it has grown 2cm in 2 months, according to the nurse that's a lot, they have just send him home with no further treatment, at present he has been taking Hemp Oil/ Phonix Tears and has a scan in sept we r hoping the tumour will have shrunk by then, heartbroken is an understatement. X

[sandraW]

Hi Martine

Sorry the results for Allen's scan where not good, this bloody awful disease, its unrelentless. The same thing happened to Trevor, the chemo reduced the size of the tumour the first time round, but the second lot did very little and his tumour markers rose quite dramatically. I know Didge has said it almost seems as though it causes the tumour to grow after the first lot of success.

I just hope you do get some good news at the next scan, take care sandrax xx

[Didge]

Hi Martine, sorry about your bad news. Rob also tried the phoenix tears which apart from anything else was great for pain relief. He also tried numerous other stuff including apricot kernels but I found it impossible to get him to take anything regularly! I do hope what you are doing helps if even to slow it down or reduce pain. Rob also investigated drug trials although there was nothing suitable at the time. You have nothing to lose at this time and when the hospital says 'nothing we can do' I think it gives a person a bit of hope that they are doing something which could help. There is no such thing as false hope in my book. Xxx

[knutsford4]

Thanks Sandra & Didge

This is our last hope, were Allen has been so strong and positive, the Phonix Tears gas change his personallity, he's quite and where he could talk for Ireland we have no conversation, he's nervous and unsure, not the confidant man I have bee with for 34 years, my heart is breaking like pain I have never felt before, I'm trying to be strong, it's very hard to talk to anyone as I just cry and people get actward, spoke to the District Nurse yesterday, on my own she said if the oil doesn't work we r looking at Allen not been here at Christmas, oh sweet Jesus please make the oil work x

[Bowie]

Dear Martine, I am so sorry to hear your news, this cruel, evil disease is so hard to cope with and it changes people, not just physically. I hope things are as good as they can be and sometimes things do work out better than you expect. Sending you both all my best wishes. Fiona X

[knutsford4]

Thanks Fiona

Life is truly a rollercoaster, some days he is good and other days he's out of it, we r putting all our hope in the Phoenix Tears, my cousin had his last appointment with his doctor yesterday and was told, " keep Doing what your doing," after an operation, chemo and radiation, then being sent home with 3 months to live, his 8cm tumour in his temple lobe has disappeared,

He was using Phoneix Tears, so we are praying really hard it works for my Allen

[knutsford4]

Hi I know it's been a while, could someone help me ASAP, Allen has been vomiting every day now, and has diarrhoea, his food is not breaking down he's on 75g Creon a day should he up his dosage, we haven't seen the GP in quite a while, and the hospice nurse has not been back for about 5-6 weeks, Allen is using Phonix Tears, so we are really on are own now, he gets his results on Monday, xx

[Guest]

Hi,

Sorry to read Allen isn't very good. Creons are enzymes, not medications. He can take as many as he needs. He cannot overdose. How is his appetite? How often is the diarrhoea?

Leila xx

[J_T]

Get your GP out pronto, likewise Macmillan or equivalent. 75g creon isn't enough. Might be worth a chat with one of the nurses here too on Monday.

Julia x

[knutsford4]

Leila, appetite not great, diarreira a week now, Julia hospice nurse hasn't been out in 5-6 weeks cos Allen taking Phoenix Tears,

[Guest]

How often in the day is the diarrhoea? Is it yellow?