Lost in a nightmare

[marie souter]

Hi Amanda,

The cocktail of laxitives and softeners Cathy mentions worked for my mom xx Also I hope they find out soon whats causing the jaundice ..

love and hugz

Marie

xx

[Sueba]

Hi Amanda

Like the others I just want to offer my support to you the ought this nightmare you are living!

Mick too had jaundice on diagnosis but showed to be the tumour blocking his bile duct so was relieved by a stent.

This however would have shown up on a scan.

Sending my love

Sue

X

[amanda45]

Hi Guys

sorry its been a while since I posted but the last few weeks have been mad. The 2nd ultrasound eventually showed the bile duct blockage so into the hospital we went (although we had to wait 4.5 hours to be admitted as nobody knew he was coming and couldn't find his medical records!! That night before I left they attempted to give him a blood thining injection(the night before the procedure) and in the morning tried to feed him although he was nil by mouth! To say we have no confidence in this hospital is an understatement. He eventually went o have his stent fitted through endoscopy but after 6 attempts the gave up and returned him to the ward. The following day they did manage to insert the stent by going in through his side although this was after the nurse in radiology brought us his consent forms and whilst explaining the procedure we realised she was talking about the wrong one (a drain and not a stent) and so this had to be corrected. So after two procedures in two days he spent the following day in terrible pain and had to have diamorphine injections to relieve it. We managed to get him released the following day and back into the hospice so they could provide the much needed nursing care. They really are angels and his liver tests continue to improve, he is eating again and they are sorting out his pain meds (upto 100mg of MST twice a day on 12 hour release and gabapentin). His chemo is scheduled for two weeks as long as his liver tests continue to improve. Constipation is still a problem but they are trying different laxatives and stool softners to sort this out. I really don't think he would still be with us if it wasn't for the hospice and although it wasn't our ideal choice for Christmas and new year it was the best place for him. We have fingers and everything crossed that the stent continues to work and we will start chemo in two weeks.

Amanda

[Bee]

Hi Amanda,

I have been following your post but haven't opted before. Glad to hear things have improved and the jaundice and liver function is improving , fingers crossed chemo can get started soon. I hope in the middle of this all you are finding time to look after yourself aswell.

Bee xx

[Slewis7313]

Amanda, I read your latest entry with amazement that the treatment you received. Talk about the left hand not knowing what the right is doing! I am however glad they finally managed to get the stent in, Phillip was made comfortable by the Hospice and the medication is being managed properly. I hope things continue to improve and that the chemo can go ahead as planned.

Take care

Steve

X

[cestrian]

Hi Amanda

Looks like Phil's treatment would disgrace a third world country let alone the UK. I think Steve and I have both had the benefit of excellent service from our local NHS so find it very difficult to understand the difference some experience just because of their location. One thing that seems really important is to nail down the person in charge of his treatment and give them Hell if it is not being delivered according to plan.

I do hope Phil's latest procedures have stopped the rot and that he will soon be up to the planned chemo.

Love and Peace

Mike

[amanda45]

Hi Guys

Sorry its been a while since my lost post we've been caught up on the merrygo round that is chemotherapy. Phil has now had two rounds of Folfox as his liver function was deemed too poor to have folfironox (this decision has now been reversed and he will have his first fulfironox next week). He has coped well with the Folfox but this problems with his digestive system continue, eating very little, constant abdominal pain and chronic constipation when he does eat - this lead to an enema by the district nurses last weekend.

When he came out of the hospice inpatient unit we fought to get him a fortnightly place at the day hospice as he felt that it was important to keep contact with them as they had basically saved his life over the Christmas period. He went for his second visit today and I am very sad to report that he encountered another very poor health professional. One of the nurses had seen on his notes that he had high blood sugar on discharge from the inpatient unit and so proceeded to check his sugar level. Unfortunately she did this straight after lunch and then when they were found to be high bereted him all afternoon 'for eating the wrong things'. She had not understanding of the problems we have getting him to eat anything or that this seems to be a common problem with pancreatic cancer. When I arrived to pick him up he was very low and quiet. She gave me a letter for his gp and then bereted me for allowing him to eat puddings and the like. I was so taken aback at her aggressive attitude that I did not retaliate at the time but since 3 pm when we got home we have talked of little else. It is now 4.20am and I am still up having just got Phil to bed as we are both so upset and annoyed by this treatment. I want to complain but Phil doesn't as he is terrified that when the time comes he wont be able to go back in.

I cannot believe that we have encountered another incompetent health professional. I would be interested in other opinions on whether I should push to make a complaint or if this would prove to be detrimental. I will add that when he was discharged from the inpatient unit I asked if they wanted his blood sugar levels tracked as obviously insulin production is done by the pancreas but they did not seem concerned at the time and said that if it became a problem he could take metformin.

[nikkis]

I am so sorry to hear that you have been treated like this. Just reading this has made me so upset, so I can't imagine how you feel. In all likelyhood this nurse will have upset other people, as her attitude clearly stinks, so it is likely that a complaint will not come as a surprise. I would perhaps ring up and ask to speak to however is in charge of the unit and explain how the incident has distressed you.

Glad to hear that Phil is improving,

Nikki

[sandraW]

Hi Amanda45, my husband has just had 6 5fu treatments, and last week started on the first of 6 fulfironox, he had surgery and only has 1/3 of his pancreas left, his blood sugars went up as soon as he started chemo, but have gone up even more since he started the new regime, we were told not too worry about the sugar levels whilst he is on chemo, and to carry on eating what he fancies, of course we do try to make sure he doesn't overindulge. Luckily he has a really good appetite and even after his surgery ate very well, but I appreciate how difficult it must be for you to get Phil to eat anything. It's an absolute disgrace that you s have been treated in this way, we have had similar treatment from our GP, but everyone else had been outstanding. I would agree with Nicky, contact them and at least it might prevent it from happening to someone else, even if she doesn't understand about the problems with PC, which she should, there is no excuse for her behaviour towards you. You don't have to go in "all guns blazing" though I am sure you want to!!, I find the we were "so upset" or "so disappointed" after the wonderful treatment we have had here ect

tends to work well. So sorry you have both been so upset by this silly woman, take care sandrax ps We too have our oncologist in Hull

[Cathy]

Hi Amanda

I agree, you ought to say something if it's upset you that much. You can do this in a way that would be seen as constructive. You could talk to Pals perhaps and just explain what was said and how it made you feel without being accusatory. Constructive criticism is good and good organisations ought to be able to learn from complaints.

Funnily enough your story resonated with me, but in a nice way.. Jonathan was told to eat and drink whatever he wanted when diagnosed, even after they found his blood sugar raised (again like you surprisingly not monitored as a matter of course despite his PC diagnosis). When he was in hospital a nurse had brough him his meal and said "I really don't think you should be eating this as a diabetic, I mean, you've got a chocolate brownie here". "Oooooh lovely!" said Jonathan. "With custard!!!" said the nurse.. "Oooooooo LOVELY!!!" said Jonathan. The nurse looked at me for help and I could only shrug and say that that was the sort of stuff he liked. When someone has PC I don't think discouraging them from eating something they fancy is good form.

All the very best for you both

Cathy xx

[amanda45]

Hi Guys

I have spoken at length to his GP and dietician re the high blood sugars and they are of the same opinion - to let him eat what he likes and we are monitoring his blood sugars each morning before breakfast to ensure they aren't above 20. Tablets where discussed but in the end the gp felt that they weren't necessary. I have spoken to the hospice director of nursing and told her that the blood sugars are now being monitored and that they no longer need to be taken at the day hospice so hopefully this will stop this problem, I didn't complain about the nurse in the end as Phil was insistent that he didn't want this.

His weight continues to drop 16 kilo's in the last month and eating and constipation is an ongoing issue. He has also now developed swollen feet and lower legs so we elevate them as much as possible and moisturise them to keep skin in as good a condition as possible. The doctors seem to think that this is because the blood vessels in the abdomen are being constricted but no specific treatment has being offered. He had his first folfironox treatment last Wednesday and this was really floored him, absolutely exhausted and not wanting to eat or drink (although we continue to push him to do so) his muscle wastage is also very advanced now and getting up and down the stairs is a struggle. He is very wobbly and I worry he will fall, this often leaves him out of breath but he says he doesn't want to be prisoner trapped upstairs. Hopefully he will improved as the week continues but it is frightening to see his deterioration over the last 3 months. Sorry to be so negative but very little seems to be improving and the chemo is really taking its toil.

Thanks for listening

Amanda

[Janiebobs]

Hi Amanda,

This such a horrible disease. I so sorry Phil had been laid low with the Chemo - I have no experience of it yet as my Dad is hoping to start in the next couple of weeks if his oncologist feels he is strong enough and his jaundice has gone.

Dad had a lot of conflicting advice regarding what level his blood sugar should be. Some professionals saying he should remain cautious avoiding fat and sugar as he had type 2 diabetes. Whereas his MacMillan nurse and oncologist said he should eat what he likes but he needs to eat - dad still has an appetite but has lost 3 stone.

You mentioned about moisturising Phil's feet and legs is this something you have been advised to do since the chemo or is it because they have become swollen? I noticed my dad right ankle was swollen last night!

Thinking of both you and Phil and this incredibly difficult time.

Jane x

[nikkis]

Hi Amanda,

I just wanted to tell you that things have been as bleak for us at times but then Paul has improved again, so don't give up hope that things could get better.

Nikki

[J_T]

Hi Amanda, sorry to hear the folfirinox has made Phil feel exhausted. Your description reminds me of another forum member's husband and i would be careful about letting Phil use the stairs. Have you thought about getting a hospital bed for Phil which can be put downstairs so he doesn't feel isolated? Of course everyone is different but it's definitely an option.

Best wishes

Julia x

[Cathy]

Hi Amanda

Your Phil's symptoms sound very like my Jonathan's so I do so empathise with how you are both feeling. Please don't apologise as its tough.

I am assuming he will be but is Phil on steroids which will help with his appetite? Has he had anyone examine his abdomen to check for an obstruction? His GP can ask for an x-ray which could be done quickly.

Julia has made a good suggestion about asking for a bed downstairs.

Thinking of you both.

Cathy xxx

[Guest]

Hi there,

I would complain. It makes me so sick the way patients are being treated. Health so called professionals have no compassion and it is disgraceful. When my dad was in hospital, newly diagnosed, a nurse he hadn't seen before tried to take away his Creons. She said they don't give creon out on that ward (he was on a gastro ward) and he said it was like a tug of war with her. Luckily he won.

The more I read about this, the more it disgusts me. I will I could say something positive, but I guess all i can say, is that it happens everywhere, which it absolutely shouldn't.

Leila x

[EmmaR]

Hello Amanda,

Sorry you are on a path so many of us have been on or are still walking so I'm just sending you love and virtual hugs stay strong and know you are not alone though it might feel like it .

EmmaR x

[cestrian]

Leila

I think you have maybe drawn the wrong ticket in the Postcode Lottery. Many of us receive superb treatment from medical staff who could not be more caring. It is so unfortunate that you're at the other end of the spectrum and of course you need to fight Phil's corner but please don't demonize all the many professionals who are doing excellent work, often under great pressure.

Love and Peace

Mike

[Slewis7313]

Hi all, I agree that the treatment some of you are receiving is totally unacceptable. I can concur however with Mike's comment as my treatment over the last 18 months since my journey started has been without fault. I have been treated quickly, professionally and with the utmost compassion from the outset...... It should be the same everywhere, but as we all too often see, it is not!

Take care

Steve

X

[amanda45]

Hi Guys

Yet another hurdle has appeared last week after 3 weeks for Phils mobility diminising he was referred back to our local hospice for physio after being told that this problem was due to a side effect of the his steroids (by our gp). Upon admittance to the hospice on last Thursday the palliative consultant was very unhappy with the symptoms he was describing such as numbness and pins and needles in his legs and referred his immediately for our local hospital for a mri scan the following morning which discovered a tumour on his d2 - d6 vertebrae that was pressing on his spinal cord and he was rushed to our regional oncology centre 40 miles away for radio therapy as the feared cord compression. He stayed in for a week (with me in a hospitality room around the corner) and had 5 radio therapy sessions and was transferred back to our local hospice yesterday. The regional hospital was great, very new and upto date, really friendly if very busy staff. The only black cloud in this was that although this is the home base for his oncologist he didn't visit him at all whilst he was there so we are left with heaps of questions and no answers.

Shortly after diagnosis we were told that there were a couple of 'spots' of his spine but these would be dealt with by the chemo and we have heard nothing about them since. What exactly is a 'spot'? Who will monitor them in future and how and when will his chemo be able to restart - no answers to any of these questions. I spoke to his oncologists secretary on Thursday and she said an appointment would be sent out to see him but no date was given. I was very angry and this response and used the word negligence which she wasn't very pleased with and so that was the end of the conversation.

We were warned that after the treatment things may get worse and indeed they have, he can no longer walk, is having trouble standing, is very nauseous and sick when he attempts to eat and is now having bladder and bowel control issues. We just continue to go backwards and trying to stay positive is becoming very difficult. I am angry at our gp for telling us that the mobility issue was due to muscle weakness from his steroids and also at his oncologist for not bothering to come and see him whilst he was in his own hospital. We are both exhausted and if something doesn't start to go right soon I have no idea what is going to happen. I want to crawl into a black hole and never get out.

Thanks for giving me the opportunity to vent.

Amanda

[Slewis7313]

Hi Amanda, whilst your treatment at the regional Hospital was good, it is no wonder that you feel the need to 'vent' as the lack of coordination coupled with misdiagnosis is certainly making your difficult situation even worse. My understanding of 'spots' is that they are picked up on scans and MAY be the beginnings of other tumours. This obviously does not help you as they have effectively stated they were seen on an earlier scan, but not specifically targeted for urgent treatment. I really hope Phil has some positives soon as he has had such a difficult journey to date. Keep phoning and pestering for the appointment as this does sometimes make a difference.

Good luck!

Steve

X

[Charney22]

Amanda I am so sorry phil is having problems at the moment. This is such

A roller coaster ride my thoughts are with you. I can so understand your anger

Having gone through similar myself, after Steve was told nothing else could be done

And was basically being sent home to die, his oncologist visited on discharge, all smiles

Saying to me "I bet your excited to have him home " how I didn't hit him I will

Never know. Keep strong , love and big hugs cheryl

Xxxx

[Cathy]

Hi Amanda,

I can't offer any great advice I'm afraid but wanted to post something to you in support. I'm sorry Phil is struggling so much. I don't know much about "spots" but these should be monitored by your oncologist by CT scans and how Phil is feeling.

It would be good to get an idea of when chemo is due to restart so chase up the appointment if you don't hear anything soon. If an appointment has been set then the secretary ought to be able to let you know when it is if you ring back.

Very best of luck

Cathy xx

[PCUK Nurse Dianne]

Hi Amanda,

Sorry to hear you and Phil are struggling at present. I wanted to suggest a way forward here, and also just to make one comment about the GP. He is not incorrect in a way, as steroids can have an effect on patients mobility, and this is often something that the GP will see in everyday practice. The symptoms may vary with the steroids, and I guess in defence of the GP he may not have been aware of the full outcome of Phil's CT - ie the spots on the spine.

I am being very honest here, so please bear with me. Often on a CT scan, there may be 'spots' that are visible, that are often too small to confirm that they are signs of tumour or tumour spread. If a patient is about to undertake a course of chemotherapy and these are early signs of tumour, as your Oncologist said, you would hope that these would be 'mopped up' by the chemotherapy. However, it should be explained in plain English that these may be early signs of tumour and that they should be reviewed at the next scan. Of course it also helps if you are given advice about signs and symptoms of what to expect too.

Amanda, do you have a nurse that you regularly see at the Oncology centre, or another regular contact that can help you to access an appointment with the Oncologist. It may be worth trying the Oncologist's secretary again, maybe she will be more helpful this time around. Were you given any other contact numbers for times like this when Phil started his chemo?

Feel free to be in touch if we can help at all.

Dianne

Support Team

[amanda45]

Hi Diane

I realise that steroids can have this type of side effect but to discuss this ongoing deterioration for 3weeks and not forward him for any further investigation is in my opinion unacceptable. Surely as phils GP shouldn't he be aware and upto date with Phils condition? We have had an ongoing issue with this practice as it took 4 months to get phil a diagnosis in 2013 and only then after I made a scene in the surgery after no tests of any kind were done for the first 3 months.

I have spoken to the hospice doctors team and they will now see Phil weekly on an outpatient basis when he comes home to ensure this situation does not happen again. (this is my opinion is an abuse of a non NHS funded body using it as a diagnositic tool for terminal patients that the NHS seem to have no time for). The nurses at our local chemo unit are run off their feet and I can't see that they would have the time to chase the oncologist around as they seems to think that not having seen Phil personally for over 6 weeks is acceptable although we have seem his brand new registrar once. I think a lot of our problems seem to stem from our geographic location and if we lived in a large urban area this would be much improved - the good old postcode lottery again!

Cheers

Amanda