It's tough

Hi All

Late at night - 1.00am Sunday morning - & it's been a bitch of a weekend. Saw Chris's oncologist's registrar on Friday who couldn't get her into hospital that afternoon. She's had the weekend coping with at least 4 litres of fluid in her lungs. Her breathing is ok but in truth only when she is sitting. If she moves (ie walks to loo, all of 10 metres), then it's 10 minutes of breathing difficulties.Yesterday was so hard, it's the first time I've felt like "I can't go on", just let Chris be put out of her pain.

Registrar told us to "turn up" at New Cross Hospital, Wolverhampton on Monday morning. She wrote us an admission letter but we have no appointment, so no guarantee they will take Chris in & drain the fluid.

Chris is frightrened for the first time, wants to hold my hand & doesn't want to go to bed and sleep without me being there with her. Not my Chris at all.

If they don't sort her out tomorrow, I fear the worst. It's happenimg anyway, but we didn't expect this way - coming out of the blue.

Sorry guys, any experiences with dealing with such fluid? Help!!

Trevor

Dear Trevor

I feel for you so much. Nothing is worse than watching your loved one be in pain and suffering. I am sure the hospital will help Chris today, though. How can they not?

Sorry I can't offer any practical advice, but please remember that we are here thinking of you and supporting you through these awful times. You sound so dedicated to Chris and the pressure and stress you are under must take it's toll on you.

Sending you my very best wishes, some strength, hope and a hug to see you through this ordeal. I know you will keep fighting, as we are all doing. Please let us know how you get on today and I'll be thinking of you.

Love

Ellie

xx

Hi Trevor,

I don't believe they would turn Chris away when she cannot make 10mtrs without experiencing terrible breathing difficulties, I am sure they would do something for her, even if it meant spending Christmas day in hospital (you'll have to sneak her in some decent food!). I know one of the 'tests' they give you to see if you are strong enough to go home, if you've had a spell in hospital is walking up a flight of stairs - which I bet Chris would struggle with at the moment, so surely that is good enough reason for them to admit her 'in' and help ease/resolve.

It sounds like Chris is experiencing a natural fear, I was similar when I came home after my op and diagnosis. I couldn't sleep at all to begin with...too scared to lose consciousness and then wouldn't have the light off at all. This lasted near on a full month. All I can advise is let her do whatever she needs to do for comfort which I am sure you are doing already, it's not so much that situations like this 'change' people - it's more like you see them experiencing something they haven't experienced before, so have nothing to compare it to - the fear will probably be as new and different to Chris as it is to you.

As for what to expect, I imagine she will have a drainage tube inserted and a collecting vessel attached to drain out the fluid - it may remain attached for a couple of days to see if the fluid build up is ongoing, or if it was a one off. It can also be treated with some diuretic drugs to help with the creation of excess fluid, and probably antibiotics incase of infection. From what I can remember, it was not a comfortable thing to have done and that the woman did have a PCA attached with morphine, but she was able to breath more easily and walk around even with it attached.

Thinking of you both at this time, and sending you a big supportive hug -

Juliana x

Trevor

I hope so much that they admitted Chris today and my thoughts and prayers are with you both.

When Ted was heavily jaundiced recently, he was so unwell I began to think this was "the beginning of the end" and it was so very frightening. Remember that Chris' breathing difficulties are symptomatic of the fluid, not necessarily the cancer. I know that drains etc aren't particularly comfortable but it will give Chris so much relief that I'm sure she'll be much more like herself shortly.

Do let us know how you got on today and remember that if you need a shoulder we're here.

Nicki

Hi Nicki, Juliana & Ellie

You ladies are so great, so supportive & so helpful. Thank you.

We survived yesterday, although the beginning was my worst time so far. Chris was in real pain at 8.00am, seemed to be "out of it" which I put down to the Zoramorph she's on & it was impossible for me to wash & dress her. For the first time I was in open despair & panic but I rang Macmillan, they sent up 2 district nurses and sorted her out for me. It was so awful, the feeling of no control.

New Cross Hospital, Wolverhampton were excellent. Once they realised how ill Chris was (took about 20 mins in open waiting room before I re-addressed the receptionist & suddenly everything happened), they found a small side-ward, put her on oxygen & commenced all the pre-admission tests. It all takes so long, but in fairness ,from their point of view, we had just turned up out of the blue & said "registra said you'd sort Chris out" !

They finally fitted the chest drain at 7.00pm & I trust that will make a big difference. Her consultant thought she would be out on Wednesday for Christmas, so I am really hoping she will be able to enjoy Christmas with the family.

I will let you know how she is after visiting today, but once again thanks for your support.

One of the things I find so difficult is that there is absolutely no pattern, every individual seems to get different side-effects & developments so you never know whether you (or in my case, Chris) are doing well or not.

God bless

Trevor

Dear Trevor

So glad to hear Chris is in the right place and receiving treatment. I know what you mean about feeling helpless and out of control - I went through so much with my hubby last year when he was in and out of hospital, culminating in an emergency bowel resection. Once you know what's wrong, I think you deal with things so much better, but it's the bit inbetween when no one tells you what's wrong and you are waiting for tests etc.

I do hope you get some rest now to regain your strength and energy, ready for Chris hopefully being home for Christmas. Look after yourself and you will be so much stronger and positive to deal with everything for Chris.

Hope everything goes well in the next few days.

Love

Ellie

x

Hi Trevor

I'm pleased to hear that Chris is now getting the help she needs. Hopefully she'll be a lot better today and I do hope that she's home in time to enjoy Christmas with you and the rest of the family.

It is strange that you mention the different side effects - in a response to another message on the boards I've just written "The one thing you can guarantee is that PC won't ever be predictable!". Still, it keeps life "interesting", although I'd like a little boredom right now, and I'm sure you would too!

If you get a chance, let us know how Chris is. If you're too busy or too tired, just know that we're sending positive thoughts your way. Do get some rest and look after yourself too.

Nicki

Hi All

Christmas Eve & Chris is in hospital for Christmas season. Also for her birthday. She's been having her right lung drained since 7.00pm on Monday, and is on oxygen since earlier that day. She is not responding to drain as expected, they think air is trapped between lung & chest cavity meaning the emptied lung cannot expand.

She's been moved from cancer ward to respiratory ward; I'm assured that although fluid caused by cancer it is not a cancer problem.

In addition to drain, she's now on suction to help pull out the trapped air. She's barely eating - I told some junior doctor they need to get a dietician on her case & get some nourishment in her. Similarly, she's pretty spaced out & I think they are giving her too strong pain relief so I told them that as well! It might be fun when I'm there tomorrow if nothing has changed.

Chris is really struggling, exhausted & very confused (due to drugs I believe, not the pain)

Our son & family are coming up tomorrow & I had the lunch menu all planned. My first attempt. All plans up in the air.

It has been a struggle this week just to survive & the worst bit is, as you all know, the not knowing. Oh, and the bloody hierachy in the medical profession so that you seem constantly only to see junior doctors who sometimes appear not to understand your worries.

To all you lovely people - have a great Christmas & enjoy. As we all know, it can be taken away in a flash.

God Bless

Trevor

Hi Trevor

That's a shame, Chris still being in hospital for Christmas and not in the best of situations. Hopefully, you will get through to someone and get them to take good care of her. You must be so upset, disappointed and probably very down at being apart on Christmas Eve and tomorrow. Take this time to recharge your own batteries and relax, even though I'm sure you are worrying yourself sick. You are so right about the worst part being the not knowing. Maybe you can still cook the full Christmas dinner another time, once Chris is home and eating better.

I hope you will be able to enjoy seeing your son & his family at least. Really hope things pick up for you all soon.

Best wishes

Ellie

x

Hi Trevor and I'm so sorry to hear that Chris is still having problems. You are quite right to insist on a dietician for her - best to avoid weight loss if at all possible.

I've said it before but it bears repeating: You need to be insistant and assertive, but not aggressive or rude (because they'll just ask you to leave). Keep at it - ask to see a senior doctor, wait 30 mins and ask again, repeat as necessary. Ask to see the dietician, wait 30 mins....you get the idea.

At least your son and family will be there to give Chris and you moral support. Christmas dinner isn't important - this time of year is about family being together and that's all that's important.

Much love to you and Chris. Let's hope that 2010 brings good news for all of us.

Nicki

Trevor, don't delay, insist on a dietician. If it means somebody sitting with Chris to ensure she eats, it's imperative that she gain strength through nutrician. My father was hospitalised through complications associated with PC (scepticemea) and on more than one occassion I arrived at the hospital to find that food trays had been left on his chest whilst he slept. He went to dialysis with the idea that he would eat whilst receiving treatment. My Dad was too disorientated and confused to feed himself and his food was often left with no member of the nursing staff to feed him. I used to have to bring my own food into him which he gobbled up with gusto, he was so hungry, but I look back now and realise that my Dad was being neglected. Also, drinking water was left out of reach, so was his alarm button. I now fear for those people on the ward with PC who don't have family to raise issues with staff. - a real nightmare which the Ombudsmand has now agreed to investigate (amongst other issues which I won't go into now). You need to assert yourself but be diplomatic so that you don't rile the staff. Make sure you document any issues you have so that you can refer to them in further conversations you have to put things right. You may also wish to consult PALS which is an organisation who will help you sort out any problems you may have with the hospital staff/systems. Gill X

Hi Ladies

Today is Chris's 60th birthday. I've been at hospital for a good chunk of the day, & she has had several family visitors as well. But, she remains pretty "out of it" - still having her lung drained together with suction support to move trapped air out of cavity between lung & chest. It is painfully slow. They are draining approx 300 - 500ml per day. I find the fact that she is disturbed, anxious & confused much worse than the draining & suction process itself.

I have become utterly frustrated with the fact that because it's Christmas Bank holiday it is impossible to get anything done. No dietician until Tuesday, although we are taking her food & she is also eating better over last two days (better meaning something instead of nothing (1/4 of omelette/2 spoons of rice/weetabix for bfast). On request list for CT Scan - which is needed to confirm trapped air or something worse. No idea when she will be scanned. No doctor to question until Tuesday - why is she so confused?

The nursing staff are basically OK, although there isn't enough of them so things get missed.

It drives me mad, I've told everybody that if you're going to be ill ensure it is between 9.00am & 5.00pm, Monday to Friday. All other times forget!

I am surviving by a thread, eating is becoming more difficult & the support I am receiving from friends, family & this site jas become very important to me.

Thanks for all your comments & ideas, I'll keep you updated.

Trevor

xx

Dear Trevor

How sad that Chris is in hospital for her birthday. I can fully understand and sympathise with your frustration and upset at what is going on, mainly because it is a Bank Holiday period. I know hospital staff need their holidays, but there should still be cover for patients in need of certain services. I know it's the "not knowing" which is so hard to take - all you want is some answers and then you can get on and deal with things. That's how I've always felt, anyway.

I hope you will get some answers and some better communication very soon. It will probably seem like forever, but tomorrow is a normal working day, so hopefully you will know more then.

Try and look after yourself. It won't do Chris any good if you are not eating and making yourself unwell, but I know that's easier said than done. My husband is here at home, yet I don't seem to be able to sleep these days and have been up half the night myself. It's a combination of not being well at the moment, rushing around trying to sort my daughter's wedding while she's up here and worrying about Brian. I sat and had a cry at 4am, just feeling sorry for myself, but that won't do anyone any good, so just have to keep going.

We are all thinking of you and supporting you in our thoughts.

Love

Ellie

x

Hi Trevor

Ooooh I'm so angry on your behalf (I'm sure you don't need any help in that department but, hey, company is better, right?!)

I suspect they have Chris on morphine and/or other powerful painkillers. Morphine is known to make patients confused at strong doses and some other strong painkillers can have the same effect. Confused and dazed is better than in severe pain. Additionally , if a procedure is particularly painful doctors sometimes deliberately induce confusion by using drugs such as ketamine so that the patient doesn't recall the procedure afterwards. Once the doses are titrated down (gradually reduced) the effects lessen and eventually cease. If you can find out what drugs Chris is being given, type the name into Google and look up the intended effects and side effects. If you scan down the results you can often find the patient information leaflet issued by the manufacturer. Obviously this is preferable to other sites (almost every drug has its opponents who will tell you it's lethal and/or addictive). It doesn't replace advice from a doctor but it might give you the temporary comfort you need pending that advice.

Inevitably the bank holiday is going to make doctors scarce. You need to be inventive in these circumstances. You'll have noticed that some of the other patients' doctors are around. One trick that's worked for me in the past is to go up to any senior-looking doctor and say something along the lines of "Doctor, excuse me for bothering you but they tell me my (Wife's) doctors are all on leave. I'm so dreadfully worried, can you spare a minute to answer a question?"

Depending on the doctor's personality, they will sometimes either answer the questions or may insist that Chris' doctor attends the ward. Occasionally they will brush you off but that's rare and, even if they do, you've lost nothing.

Turning to you, Eliie is right. You need to look after yourself so that you can get Chris home sooner (If you're not fit to look after her, the hospital will keep her in longer), That's the biggest motivation you can get! I wouldn't normally advocate for them but in these circumstances ready[-meals that you just stick in the microwave are quite useful. For other meals buy or make your favourite sandwich/roll/wrap. Cut into at least four pieces, preferably just one or two bites. Wrap in clingfilm and place in fridge. Every time you go to make a cup of tea/coffee eat one whilst the kettle boils. You'll be surprised how easy it makes it to eat.

Make sure you get enough sleep and look after your own other needs too. You need to be strong for Chris.

Sending you and Chris all my strnegth and support.

Nicki

Weekends and bankholidays are certainly the worst times to rely on a continuous standard of care from the hospital - I always seemed to pick a Thursday to be ill....and if I wasn't seen by a senior DR. on the Friday I knew I was in for a sh*tty weekend of it.

It also makes me angry to see you and Chris in such a situation as I have very similar memories at certain low points in my frequent stays at the hospital.

Nicki is right about the painkillers, they can definately contribute to the confusion and disorientation Chris is feeling, it may be frightening to see your wife this way - but consider it a welcom alternative to her writhing in pain. Keep bringing her food in, anything you can prepare at home and not boil to death or microwave will have 100 x more nutrients in than what the hospital has to offer.

The dietician that saw to me in hospital advised I ate junk food and burgers to put weight on, she said it was the quickest way. I think it's also the quickest way to cause other problems as well - so be mindful of what the dietician suggests. Plus, I am not sure whether Chris is on Creon or not - if not, you may want to ask for some and start giving it with any snacks/meals she has, just incase her pancreas isn't making enough enzymes. If she isn't able to swallow the capsule, you can open it and sprinkle/mix it into her food. They don't taste great if chewed alot, so mixed into soft foods are the best - easily swallowed (mash/porridge/thick soups etc).

Hopefully 'service' will resume at the Hospital this Tuesday - right a list of questions/things you want sorting/doing so you don't get waylaid by hospital jargon and politics. Also remember the PALS service - they may be of help if you are not satisfied with how things are going.

This link shows you your nearest office: http://www.pals.nhs.uk/officemapsearch.aspx

Thinking of you both and praying for a speedy recovery so Chris can come home and celebrate and enjoy her birthday and the festive season with all her family and friends.

Juliana x

Hi Juliana & Nicki

Thank you so much for your replies & your support.

I’ve had a much better day at the hospital today & obviously my “activity” has got results. I was phoned at 9.30 to arrange Chest Consultant meeting, offered tomorrow & when I told them “No, it must be today”, they told me to be there for 11.30 (visiting is 2.30!)

When I arrived Chris had already been visited by Palliative Care Team to review her medication. As a result, they are changing several medications to try to reduce the amount of confusion, “out of it” state that Chris is in. The main change is to move to Fentanyl Patch from Zomorph, whilst dropping Furesomide (water tablet) & the anti-biotics. I really hope this works as her mental state is so upsetting.

The dietician then arrived & understood immediately my concerns. So she should, as Chris has lost ½ stone in the last two weeks, having gone 10 months with no weight loss whatever! I realize nursing staff are busy but I fail to understand why, when they have a patient in mental confusion & basically incapable of feeding herself,they do precisely nothing. Why not spend 5 minutes when meals are served sitting with them, even feeding them. Because I was there when Chris’s lunch arrived (I shouldn’t be, they have this politically correct crap about “protected eating” meaning all visitors out!), Chris ate more lunch than any other day because I fed her!

Chest Consultant Registrar was excellent. Explained everything – basically Chris has a collapsed lung which they can’t repair because she’s too ill & the cancer has spread. She arranged an immediate CT scan – been on list sit Tuesday! - & explained about fitting a permanent chest tube with bag to collect fluid.

Finally, this afternoon Oncology Registrar turned up & we discussed whole situation.

I feel so much better – obviously it’s not good news – but if you know what you are dealing with & you know that actions are taking place to “fix”, it does make life so much more bearable. We can deal with the outcome of the treatment when it’s done – just do it!

Thanks once again - I'm going to the pub now to meet some pals. I need a pint, snow or no snow!

God bless

Trevor

Hi Trevor

I have been following yours and Chris's adventure over the last few weeks

i am so pleased you are getting somewhere at last..fingers crossed Chris will be home very soon and you can get on and do the things you want to do

you have both been in my thoughts and prays

have a lovely new year and keep positive

thinking of you both

Pauline XX

Hi Trevor

So glad you got some results today. No wonder you feel better, even though it's not the best news, as you said. Once you know what you're dealing with, you can get on and deal with it. You've fought and got things sorted for Chris, so well done.

Hope you enjoyed your pint.

Ellie

Hi Trevor,

Sorry to hear that the cancer has spread, it's the type of news nobody wants to hear - but atleast you will know what you are dealing with and can monitor/gauge any progress once a course of treatment has been decided upon.

I hope with the help of the dietician Chris can gain some weight and maybe strength to pursue the lung issue and not have to deal with a permanent drain.

As for the drugs, I have had Fentanyl, it was very very good, great pain relief without the drowsiness and itching of morphine - I hope it works well for Chris, there are different strength patches and they stay on for something like 3 or 4 days. Fentanyl can also be given by drip, I had it post operation - I have to say it was the most amazing thing as I felt no pain and was ableo to converse with my hubby as if nothing had happened. It was only when they switched it off did I realise the epidural they had put in for the op and post op pain - was not working on one side of my torso.....that is something I would not want to revisit let me tell you!

Hope you can let off some steam down the pub and chill out with some friends (preferably indoors, in the warm - not stuck in the snow!).

Juliana x

Hi

Thank you ladies for your responses & support. The ideas & support we receive on this site have become invaluable to me. Juliana - thanks for the information on Fentanyl, it sounds like it is exactly what is needed.

Today is our 42nd Anniversary. It will be very strange to be at home on my own this evening.

I will keep you posted on today's developments later.

Trevor

Hi Trevor

Well done. What a difference it makes once they realise you can't be fobbed off! I'm sorry the news isn't the best but at least you know there is action to combat Chris' pain and that she's really being looked after.

Sending lots of thoughts and prayers for you both.

Love

Nicki xx

Hi Trevor,

Looks like you have lots of postponed celebrations to catch up on when Chris comes out of hospital.....what an incentive to get out of there!

Well done for staying calm and getting things moving at the hospital.

Take care, and speak to you soon -

Juliana x

Hi All

There is an amazing track on the Robert Plant / Alison Kraus album "Raising Sand" called Your Long Journey.

If you've not heard it, play it. And Emmylou Harris " Not Enough" from her last album "All I Intended to Be". They will make you cry, be warned!

I think I have to tell you all that Chris has begun her long journey. Today her pain has increased to cover not just her troubled right lung, but its also back around her tummy, ie her pancreas. I had awful day (and so did she), but she had so many painkillers(ie still morphine) she didn't really know how crap it was!

We're just trying to get her home, or into a hospice, asap so that she will leave us with dignity & in peace. We have had an amazing year on our "long journey" that was really a miracle. I hope I'm being a pessimist, & that the doctors can do something but I think it's all over, really.

As I write, tears flow but now I want Chris to have no suffering. Our life has been a long laugh together, believe me, and I came to terms with Chris "shuffling off into the sunset" a long time ago. Now its all about quality & peace.

I don't know how many hours or days we have left, but thanks for your company. Without you all it would have been much more difficult. I'll keep you posted.

Stay strong, & stay in love

Trevor

xxx

Trevor, I read your message with a heavy heart. I'm so sorry to hear that Chris is not bouncing back as we'd all hoped she would. At least, should the worst happen she has her "rock" (yes, that's you!) beside her and your love to comfort her. For the moment, though, I'm choosing to think that 'while there's life, there's hope" and praying that she recovers at least enough that you both get more good-quality time together.

Do keep us in the loop with how you're both getting on.

Nicki xx

Dear Trevor,

I don't know what to say.

Part of me wants to encourage you to get Chris to fight hard and part of me wishes Chris a peaceful and painless end. The biggest 'part' of the two has to be the fight - but that's just my natural reaction. I have read of people improving even from literally knocking on deaths door with this Budwig regime, but it would be an added stress and risk which at this time in your lives, you may not want to embark upon.

Whatever decision you and Chris make will be the right one for you both. Your 'journey' has been inspiring and thank you so much for sharing it with us.

Thinking of you both and sending you a big kiss and a big hug,

Juliana x