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wobblybobbly
Posts: 15
Joined: Sat Jun 04, 2011 8:32 pm

Am I being unreasonable

Postby wobblybobbly » Tue Jun 14, 2011 3:14 pm

Hi

Well, it will be a week tomorrow since my Dad had his liver biopsy - they have given him an appt to see Oncologist next week to discuss the results. This seems like such a long time to wait, as I hear of other starting treatment (chemo) within just days. It has been nearly 2 weeks since my dad was diagnosed. Whatsmore, when he had his liver biopsy they said his blood sugar was very high, but nothing more was said, and nothing done about it. The good news is the pain has been sorted out to some degree with ibuprofen and from what I understand my dad has had a pain free few days - however the constant tiredness he is finding quite hard, so he went to see his GP today, as he is concerned it could be diabetes. He had bloods taken, and again it is more waiting - although water sample showed immediately that glucose levels were high (despite fasting).

I am just really concerend about the timescales in getting things moving. I am mindful not to be inpatient or unreasonable, but I do feel the blood sugar thing should have been investigated at time of biopsy. Am I being unfair? I just feel making someone comfortable is the very least one can expect which such a devestating diagnosis.

Sorry for the dribble, its just hard to know.

Alison

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

Re: Am I being unreasonable

Postby Nardobd » Tue Jun 14, 2011 7:13 pm

HI Alison

No, you're not being unreasonable. Well, not in my opinion anyway.

The good news is that after your Dad sees the oncologist it should be fairly quick to get the chemo going. If they want him to wait another week or two then it's time to start being a little more demanding. Unfortunately, within the NHS there is a laissez faire attitude (a sweeping generalisation but not an unfair one, given our experiences). I have found only one thing that combats this - demanding better. You need to find the line between assertiveness and aggressiveness and stay just the right side of it! ("He can't wait another bl**dy week!" isn't ok but "I'm sorry but to wait another week is simply unacceptable" is)

Be firm and objectionable - I once told the Pharmacy Manager at our local hospital that she needed to go and tell her oncology colleagues about how long drugs take to get ready because they were giving her a bad rep! Yes, in front of the whole pharmacy staff! But make sure you're not rude or threatening in any way - that will get you nowhere and they may even eject you from the hospital.

If that doesn't work, then you need to go further and threaten PALS (the Patient Advice and Liaison Service), which is there to advocate for patients, or even the local press.

Unfortunately, the various departments within hospitals don't work together - Ted was refused a consultation to discuss his leg problem because the oncology department hadn't done a 'formal referral'....I won't get on my soapbox here!

In my experience within the NHS those that shout loudest (and in my case, throw their toys out of the pram occasionally!) get treated better.

Kind regards
Nicki

wobblybobbly
Posts: 15
Joined: Sat Jun 04, 2011 8:32 pm

Re: Am I being unreasonable

Postby wobblybobbly » Wed Jun 15, 2011 9:04 pm

thank you for your reply Nicki.

Dad ended up going to see his GP yesterday - although his pain has been better, the tiredness remains. He went and asked about possibility of having diabetes (as I said, his blood sugar level was over 12 when he had his liver biopsy which is higher than it should have been). Anyway, they took blood and his levels are now up to 17 (and that was a fasting sample). The GP had someone go round last night with some temporary medication to stabilise the levels, and he now has an appt at diabetic clinic tomorrow. I just think this should have been followed up at hospital when he had his biopsy, especially as he had said he was tired. I am just a bit aghast to be honest, but don't really feel I can push my Dad to fight his corner, when he just seems to think this is just the way it is. Anyway, hopefully tomorrow he may start to feel a little more comfortable if his sugar levels are stabilised.

Thanks again for your support

Alison
xx

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

Re: Am I being unreasonable

Postby lynbo » Thu Jun 16, 2011 12:16 am

Hi Alison
Totally agree with Nicki, don't be scared to challenge what is said, or ask questions a second time, it's all new to you, and you want the best, who wouldn't?
Been there bought the t-shirt....
Your Dad sounds like many, as in he doesn't want a fuss, but you are his loved one, standing his ground for him.
Good for you, and chin up, everyday sometimes feels like a battle?
Much love xxxxxx

wobblybobbly
Posts: 15
Joined: Sat Jun 04, 2011 8:32 pm

Re: Am I being unreasonable

Postby wobblybobbly » Mon Jun 20, 2011 9:07 pm

Well, a few things have happened since my last post. Dad started taking meds for his diabetes, but steadily got worse with exhaustion and breathlessness. He went back to see his GP who did a few more tests - blood glucose level was up to 18 I think. Dad was so weak they admitted him to hospital Friday evening, where his level had gone up to 27. So he was put on an insulin pump. He has been there ever since, and levels have stabilised although it took a while. He was taken off pump today, and started injections tonight I believe.

He also had his first oncologist appt today - inoperable, 4-6 mths prognosis, possibly up to a year if he has chemo. More tears shed. Went to see him this afternoon and he was remarkably perky in himself. He has no pain, and not as breathless. He had another CT scan of his chest, as they are worried he could have an infection - he is on antibiotics anyway, just incase. I just hope it hasn't spread further.

So now its a case of making sure his blood sugar levels have stabilised and no chest infection, and then chemo will be able to begin (gemzar). So, thats it.

I'll be honest, I have no idea what to expect from chemo. I know side effects are different for everyone, but my image is of people being bed-bound while being treated, throwing up, feeling terrible. Is this how it is likely to be, or are side effects mild and bearable to some degree? My dad was on about driving himself there every day, and maybe going to Sainburys afterwards to do some shopping....I was a little flummoxed, and kind of wondering whether this would be at all possible. Or am I being ignorant?

Anyway, I am waffling as usual. Any experiences of chemo would be really helpful for me.

Thank you

Alison
xx

laura
Posts: 385
Joined: Thu Jul 01, 2010 1:53 pm

Re: Am I being unreasonable

Postby laura » Wed Jun 22, 2011 10:12 am

hiya, my husband has been having chemo now for 1 year, GEMCAP his cycle is monthly, 3 weeks on and 1 week off, our experience has been and still is very good, the treatment room at the headland centre has lovely easy reclining chairs, i always go with him, there is tea etc available from the friends of the hospital, also food if there over dinner time.

my husbands infusion takes approx 35 mins, so we are usually in treatment for about an hour start to finish.

in all that time i have only once driven my hubby home he has been fine, we have gone shopping afterwards and had a bite to eat [ always got creon and domperidone with me, and oromorph!] Sometimes we have gone visisting "friends from chemo"

sometimes we come straight home if he feels tired, so as you can see its fairly varied, 3 weeks ago after chemo on the friday he drove 200 miles to go on a recuperation break, i know we have and are very lucky compared to some,its 18 months since diagnosis 16 months since attempted whipple 12 months chemo , i will write again if you want me to, but just had a call from one of our drs they want him to go for an mri scan cos we mentioned on monday about a new pain, how good is that eh, i dont write very often because i feel we are so much "luckier ! than some , if that makes sense, althoigh as we know he has a teminal illness.
my love and best wishes to all on here.stay positive live each day happily, laura xxxx.

suri
Posts: 6
Joined: Fri May 13, 2011 9:37 am

Re: Am I being unreasonable

Postby suri » Wed Jun 22, 2011 11:10 am

Hi

I thought I would add my husband's experience of chemo with gemcitabine, which hopefully may also ease your fears and worries a little. My husband was diagnosed with a locally advanced, inoperable pancreatic tumour in late January this year. The tumour was in the neck of the pancreas, encasing his aorta, SMV and Caeliac Axis. Since then he has been treated with gemcitabine initially for three months, three weeks on and one week off per cycle. He too, had it via an injection into a chest port, whilst at the hospital. Each treatment, one per week, took approximately 90 minutes. Side effects were relatively mild. He was very tired and experienced nausea, usually on the day or day after the treatment each week. He tended to go off various foods and ate very little, so maintaining his weight was a problem. We found that the worst week for side effects tended to be towards the latter part of each cycle. We suspect it was the cumultaive effect of the drugs. His last cycle ended about 8 weeks ago and since then he has been treated with daily radiotherapy and 5FU, which is carried on him in an infusion bottle. He has regained some weight and is doing remarkably well despite being tired. At this stage we are both feeling quite optimistic as his tumour marker has decreased by about 75% since diagnosis and he is pain free. As he was previously suffering from quite intense back and stomach pain, this is a huge relief and he no longer requires medication. He was taking a combination of opiate drugs which left him feeling completely unwell. All of this the oncologist is attributing to the gemcitabine. Clearly, it appears to be having some sort of impact on the tumour. We were told that all we could expect was palliation of symptoms, so I guess he is doing well right now.

Both of us had been very fearful of the side effects of chemo and radiotherapy. However, at this stage at least, our scepticism and fears have not been realised. We suspect that he may be offered more gemcitabine when his radiotherapy is completed in about 5 weeks time.

I hope your experiences are as positive as ours.

Best wishes

Suri

suri
Posts: 6
Joined: Fri May 13, 2011 9:37 am

Re: Am I being unreasonable

Postby suri » Wed Jun 22, 2011 11:17 am

Hi again

I forgot to add that my husband too, is a diabetic and had been having massive fluctuations in his blood glucose levels both prior to and following his diagnosis. Stabilising this has been quite tricky, particularly as he was getting very thin and needing to eat more to increase his weight. We found that immediately following his gemcitabine treatment, his glucose levels would go sky high. I believe this was attributed to the steroid medication which is used in the infusion to ease inflammation. It's worth discussing the management of this with your doctor. I believe it can be a bit of a trial and error process establishing the correct medication levels. My husband is now on twice daily insulin injections in addition to metformin tablets. Gradually, his blood glucose levels appear to be stabilising.

Best wishes

Suri

ali
Posts: 90
Joined: Sat Jun 25, 2011 9:22 am

Re: Am I being unreasonable

Postby ali » Mon Jun 27, 2011 10:53 pm

Hi no you have to question everything re. info from nurses at visiting and ask to speak to doctors for a proper update--if you dont -they will not come to you at visiting time at hospital!
I should know---My mum was admitted the thurs via a gp housecall thurs 28/05---Bank Holiday weekend--she had an u/sound of abdomen as an out patient on the 24/05 but was so weak and had really not eaten much for a few weeks ( symptoms prob. bad from Feb 2011 ) CT scan ordered on sat 28/05 which she did not get till Thurs 02/06 and scope 03/06 (totally unnecessary in diagnosis and traumatic for her--if they had got CT result ) MDT meeting tues 07/06 For once met by a doctor ( not consultant ) to be spoken to (as i had fully expected ) They then said we will take you and you husband and your mum to the office----as they walked her /shuffled her along the corridor ( as a Practice Nurse --i do not know how i let this happen but i was in shock mode ) we were all told advanced PC and mets.--nothing to be done. A nurse took her back to lie on her bed--while we spokt to the doctor and composed ourselves.Within less than 10 mins we went back to mum--who had been left on her own ( i do not think many staff/wards know what compassion is nowadays ---i trained in 1979--old school--so i am 50 but i know how to treat people with dignity and this did not happen to my mum for the 2/52 she spent in hospital ( i could go into much more detail-but i am very tired tonight--but will be posting again-soon )
By the way we took her home on Wed08/06 and she was so glad to be in her own bed------she slept away on Sun 12/06/11. As a family we feel deprived about timescale of being in hospital --she could have had one nicer/comfy week at home instead of being in hospital waiting for results---trying to swallow oral medication----coi;d have had patches for nausea/pain-----she and her family wer deprived of decent End Of Life Care--all be it for a couple of weeks
Thanks to whoever reads this

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

Re: Am I being unreasonable

Postby Ellie » Tue Jun 28, 2011 6:31 pm

Dear Ali

I am so sorry to hear what happened to your mum. To hear a terminal diagnosis is terrible in itself. To then know your Mum could have received much better care for the rest of her time must break your heart. I have recently lost my husband but I can be so grateful that he was in a caring hospice and nothing else could have been done to improve his final week's care. Maybe, when you are feeling stronger, you could contact PALS and at least make suggestions to improve things for the future? It may help you feel that at least some good has come of an awful situation.

My heart really goes out to you. I know words are pretty useless at the moment, but I hope, eventually, that you will be able to look beyond the last part of your Mum's life and remember the better times. I know I am finding that difficult at the moment, but it's what I aim to be doing in time.

Best wishes

Ellie
x

ali
Posts: 90
Joined: Sat Jun 25, 2011 9:22 am

Re: Am I being unreasonable

Postby ali » Tue Jun 28, 2011 10:22 pm

hi thanks for your reply--I was not sure if anyone would reply-- this is early days and got upset again today at gaeden centre- where we used to visit with mum.
I feel within next few weeks will send a letter to consultant--spoke to ward nurse and said i might put a letter in for the consultant--and she said "we will all have to write statement " --well maybe they might have to. The retiring collection at the funeral raised £577 for Pancreatic Cancer UK and will be sending cheque to them this week
Thanks for your concern
Ali x x

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

Re: Am I being unreasonable

Postby lynbo » Wed Jun 29, 2011 1:03 am

Dear Ali
I've read your post and didn't know whether to reply, but, it's 1am, I can't sleep for thinking, so here goes.
Not a lot of words will comfort you at this time, and although your not alone in your grief/anger, it's no help to you, but, I know how you feel, well I can empathise with you.
As, it was my 39 year old husband who I lost, and not my mother.
Andy was treat the same way tho Ali, messed around, then too late for any real pain relief and comfort?
I cared for him myself, administering all his meds, and trying my best to keep positive, although your mum passed quickly, my Andy was 7 weeks, looking back, it's terrible to see them suffer, really heartbreaking, non of us wish for this terrible disease, but, for the ones who have it, when it has spread to the point of only pain relief - then the short timescale has to be a blessing?
I never stop thinking about Andy, and what must have gone through his head being told 'your dying quickly' who can comprehend that?
At any age? It's a total blow to the system.
I can tell your angry, I'm still angry, and I'm angry for you, and everyone else that gets fobbed off with paperwork and waiting for scans etc?
To collect £577 for puck is a positive thing you have done, so try and keep strong, if you decide to go to PALS, then make sure you have support, let's hope that we can strive for early diagnosis,
Thinking of you
Much love
Lynne
Xxxxxxxxxx

ali
Posts: 90
Joined: Sat Jun 25, 2011 9:22 am

Re: Am I being unreasonable

Postby ali » Wed Jun 29, 2011 7:42 pm

Lynne Hi thanks for replying--it actually is quite a comfort to have found this site (not told about it from the hospital )
Actually this time last year i was probably wasting my time viewing "weight watchers postings "---lol.
I am so sad to here about your young husband--do not no how i would go with that.That is so unfair-- i mean we are upset about mum-but until recently she was fairly well--no chronic illness over the years.
My dad died in 2005 nov.
My thoughts are with you as i do not know how you are coping with or without any children.
Our daughter is 24 and was due back from Vancover on the 22nd via the Tennis--anyway we got her an early flight home---gran had died but wanted back in time for funeral--was really close to her gran--as was my son who is 22 and a chef, who went to Melbourne last October for ? one year--but he managed to phone and speak to his gran on her 2nd day at home--he is very upset but is with good friends from primary school -so it helps me to know people are caring for him.
I realise my mum was lucky "sleeping away very quickly "--i totally admire you for bearing up to watch your darling husband go on for seven weeks
Helen
xxxxx

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

Re: Am I being unreasonable

Postby lynbo » Thu Jun 30, 2011 12:25 am

Hi
I'm glad that my post helped, a little, today is a year since we were told the news, but the days events are as fresh as they were 12 months ago.
We had no children, I'm 35, we had been together 15 years.
It was us against the world, now it's me against pancreatic cancer.
As I said before, for your mum and my Andy, it's different to others on this site, we all have unique stories, but in their case, it was short illness, and to be honest - the last few weeks for Andy were horrific, he was a proud man, and kept saying that I shouldn't have to be looking after him, it should be the other way around.
He was so frail, weak, and on the morning he passed, he had a huge internal bleed, which resulted in black coming from his nose and mouth as he slipped away, I was like a crazy screaming lunatic desperately ringing 999.
My neighbour ran in as she heard me screaming. It was terrible.
Out of pain, they both are now.
And we have to try and be strong, believe me it's hard.
I didn't come on the forum till I lost Andy, and heard through a friend about it.
Take care - thinking of you
Chin up xxxxxxx

ladywood
Posts: 39
Joined: Mon Nov 29, 2010 11:31 pm

Re: Am I being unreasonable

Postby ladywood » Thu Jun 30, 2011 1:17 pm

Hi Ali, was so sorry to hear about your mum and her treatment at the hospital. In my sisters case it was the GPs who neglected her and also A and E who sent her home twice without finding out why she was in so much pain. Sadly once she was admitted to hospital it was far too late and she spent 9 weeks there before she died. She badly wanted to get home and it still upsets me so much that she never made it. Its very early days for you but eventually I hope that the nice memories you had with your mum will help to take away the sadness of her last days. I too have found this website a comfort. Will be thinking of you. Marie