My husband massive pleural enfussion

[Birchen]

Sorry forgot to ask has anyone heard of Taheebo Tea Bark Brew as someone gave me this and told me it helps. Never heard of it but is it worth a try?

Lyn x

[J_T]

Hi Lyn, sorry to hear Terry is feeling emotional, its inevitable when you think what must be going on his head. Ray did get emotional quite a lot, well we all did.

I completely get the 'what to say for the best thing', its so difficult, but all you can do is your best.

Ray and I were married for 41½ years and have discussed all sorts over that time but he found it difficult to talk about his illness and we never had a deep conversation about it. I did ask him once if he wanted to talk about things but he sort of brushed it off and I took that as a 'no' and was completely led by what I believed he wanted. I may have been wrong but you can drive yourself daft thinking of the could have, should haves so I try to push anything like that aside.

Just be there for your man as much as you can and I know you will be. We're all behind you!

Sending you a virtual hug Lyn <<>>

Julia x

btw I haven't heard of the tree bark brew at all?

[Cathy]

Hi Lyn

I'm sure Terry does feel emotional. He must have so much whirring around his head as will you and there is no answer as to what to do or say for the best other than what Julia did, let him know if he wants to talk, you are there to listen.

Jonathan also gets emotional, ironically I guess is particularly if he has a really nice day. He also goes to see a councillor organised by the local hospice which he gets something out of but it's not for everyone.

I also haven't heard of the tea. I suppose if it is something Terry would enjoy, why not try? I think that's the main thing (as a few of us found to our (financial) cost a little earlier this year). If you do a search on "bitter melon" on this site you will see what I am talking about - it might make you smile, I stil have a cupboard full of the d*mn stuff!

Take care

Cathy xx

Edited November 3, 2013 by Cathy

[J_T]

We are generally here to talk of treatments that are being had and give help and practical advice on things but I think its good you have brought this up Lyn. The emotional/mental side is a very big part of this illness, massive I'd say, for all concerned.

I suppose you know at the back of your mind that if your partner, or you, if you are the patient, is getting upset then probably others are too but it does help to know that you are not alone in your experiences with this horrid disease.

Thank you for raising the issue.

I hope Terry is feeling better soon.

x

[cestrian]

Some of the above have helped me enormously this evening as although physically I've been fine today, walked dogs ate good breakfast etc, I have just had a bad day with my emotions. Now this may just be because Chester FC threw away two points yesterday by letting Aldershot equalise in the 90th minute but I suspect it's more to do with living with this damned cursed

disease.

Sadly my dear wife bore the brunt earlier in the day so she was mightily relieved when our daughter and granddaughter arrived. Young Grace, who is 5 at Chistmas was a tad fractious but nothing out of the way but I'm afraid she was also on the wrong side of me as she was clearly upsetting my daughter. I think I got right down when she wanted me to take the dogs to the forest with them and, as I'd been out already I was just not up to it so her Mum took her. It was when they were leaving later to go home when my daughter said for her to give Grandma and Grandad hugs and kisses that I cracked. "Come on give grumpy grandad a hug" couldn't blame her for offering the 5 year old's equivalent of "B#gger off" but no she hugged me and I just dissolved with guilt and of course with sorrow that I just can't do all the lovely things that we used to enjoy so much. Unforgivable in our tear free zone but I quickly recovered and from reading other comments no longer feel alone.

Back now to the usual positive mental attitude with a busy week ahead so thanks for enduring this diatribe hi-jacking someone else's thread!!

Love and Peace

Mike

[cestrian]

"Just a minute it's stopped hailing

Guys are swimming guys are sailing

Playing baseball, gee that's better

Muddah Faddah kindly disregard this letter!"

Apologies to Alan Sherman's classic Camp Granada but the sun is shining here and it's a whole new day so Rock On!! Hope we are all feeling good today

Love and Peace

Mike

[Slewis7313]

Brings back memories Mike! Keep the positives coming.

Steve

X

[cestrian]

Hi Steve

It would've been a bad hair day yesterday if I had any!! Can't blame chemo as bald as a coot since I was in mid 40s!! I guess just as one swallow doesn't make a summer one snowman doesn't make a winter either!! Normal service now up and running!

Hope you're continuing to recover from your aborted op well!

Love and Peace

Mike

[PCUK Nurse Dianne]

Morning all,

I apologise in advance, as I don't always wish to add my 'nurses opinion' unless absolutely necessary, however wanted to add a few words really.

I think one of the great aspects of this forum is that you have a place to share thoughts, and emotions, and the beauty of this is that you are all in a similar place to be able to understand, empathise and support each other. It is often very difficult to be able to broach the subject when either your or your loved one are feeling a bit down, this may be due to several reasons.

Often 'patients' will feel they don't wish to burden their nearest and dearest with how they are feeling, it is one of those areas that often makes us feel quite vulnerable and emotional, and most of us hesitate in openly expressing this.

It can also be a very difficult subject to 'open up' about, and often leads to discussion about other issues that people will be afraid of discussing ie 'end of life'.

For those of you who have a community Macmillan nurse or Palliative care nurse, these professionals are often very good at succinctly talking about these issues when they come to visit, especially if they are aware that it is a concern at any given time.

For carers, there are often feelings of 'guilt' if you are a bit down, and don't wish to burden the 'patient'. Also, carer's will express guilt for 'being normal' and wanting to get on with normal daily living. This is such an important aspect of life and then allows you to be the loving carers that you are, so permission granted to do this and don't feel remorseful for it.

There are 2 very good Macmillan books that may be helpful if any of you wish to ask for these to be posted to you. They are:

'Caring for someone with advanced cancer', which is a great booklet with sections on caring at home, your own feelings and emotions and dealing with some of the symptoms of cancer.

and: 'Hello, and how are you?' This is also a great book, written for carers by carers, and has some really good sections on moods and emotions.

Both of these booklets are available from Macmillan, free of charge.

http://www.macmillan.org.uk/HowWeCanHelp/Publications/Macmillan_Publications.aspx

I hope this may be helpful, and of course Jeni and I are always around to chat if you ever feel that this would be helpful too.

Dianne

Support Team

[Cathy]

Thanks Dianne..

Mike, I'm glad you are feeling chippier today, we're all allowed down days.

Bloomin football.. I support Carlisle Utd (I know I know) and Jonathan Chelsea - imagine the mood in our house on Saturday lol.

xxx

[Birchen]

Thank you Mike, Cathy, Julia & Dianne

Totally understand some of your comments and today is another day. He does seem to be more upbeat today and even went into work, which is sometimes difficult as it is a business he started from nothing and is in a way his baby. We also find Mike that when the family bring the grandchildren up it is hard as everyone obviously wants to see them grow up and when the extended family all get together it really gets to him as they are all extremely close. Saying that he is very lucky to have them all and I am sure they will be there for support when needed.

Anyway today has been better and it was made easier by reading all your comments.

Chemo starts again on Wednesday so onwards and upwards.

We too have tried the bitter melon (Terry used to be a greengrocer years ago) so all his friends in the trade have been sending the horrible little green things and recipes with either raspberries, apples, broccoli or cucumber, apples and celery. He says it doesn't taste to bad but the juicer is a nightmare to clean afterwards.

Hello Steve, hope you are feeling a bit better today.

thank you all love Lyn xx

[InfoForMum]

I'm also glad that you Lyn and you Mike have been so open about how you are feeling. For Mum "poor me" feelings and sympathy were surplus to requirements while she was racing to proper diagnosis and good treatment, but now, with a routine in place, the gaps in between active treatment and scans have left room for a number of emotinally darker patches.

Dianne's post was very thoughful and those booklets sound useful. Will probably link to that from my thread. I also posted on the coronation street thread about depression and the need to not feel guilty for talking or for being quiet, but to remember you don't have to be alone.

Lyn, speaking as someone who's father suffered severe bouts of depression, especially during his time living with prostate cancer and someone who has had personal tangles with the black dog, your willingness to just be company while he is aparently within himself probably means a great deal. One of the vicious cycles I've experenced and seen is depressed souls understanding that they can be pretty tough to be around. They feel desperate to be with people who love them, but don't want to be asked to do or say anything. Recognising the discomfort this causes others can in turn cause lots of guilt and they can sometimes bite off their nose to spite their face by pushing people away "for their own good". When I came out of the other side of a nasty period, I was able to tell my other half how much it had meant to be reminded he was going nowhere, he didn't love me any less and he could handle this. I didn't acknowledge it when it was said, but it dulled the fear that I was ruining his life.

This is my very specific and personal take on things and hope it does not muddy waters. More generally sending you big hugs because it's very tough to not get feedback to know you are doing the right things, but in your heart of hearts I hope you know that you are.

Hugs

Sarah

XXX

[cestrian]

Had to share this little gem from my daughter. Yesterday was my brother-in-law's funeral and it was a lovely service and family gathering. It is difficult to feel too much sorrow when death proves to be a blessed release and, who knows, re-unites him with my sister to whom he was married for 60 years.

As the coffin was wheeled into the churchyard in the traditional manner mybeloved daughter turned to me and said "When the time comes Dad we're going to have you pushed in by girls in bikinis accompanied by the Benny Hill Yaketty Sax theme music!!" Really shouldn't be laughing at a funeral but we both cracked up. What a picture that painted!

Love and Peace

Mike

[InfoForMum]

I'm sure it was a tough goodbye, but it's so good to keep your sense of humour. I love that mental image - go Cestrian Jnr I like your style!

Reminds me of my Dad's funeral where the elderly lady organist played a Des Lawson-esque rendition of Jerusalem as the coffin entered the church and despite determined coughs from the vicar wouldn't stop. She was only flagged down after the vicar marched down the aisle, robes-a-flying doing his impression of the Team America secret signal until she caught sight and ceased with an exagerated groany wheeze (from the organ that is!).

Dad would have loved it!

Sarah

[Cathy]

LOL.

Now THAT remnds me of my sister's funeral nearly 5 years ago. I had the job of making up a cd of her favourite songs to play that people could listen to as they arrived at the church. It was going to be put on 45 mins before the coffin and the family came into the church so I'd timed it so that we would arrive to "Born to run" (Bruce Springstein) - v fitting for my sister. My little brother (much younger) wanted to be involved and was insistant on having "Up where we belong" Jennifer Warnes and Bill Medley - I wasn't convinced at all she would have agreed but in the end popped it on first.

When we finally arrived at the church I was mystified to find that, as we entered with the coffin, it was to something by Duran Duran - right near the beginning of the cd. I found out later, from a friend who had been in the congregation, that the cd player had kept playing, on repeat, "Up where we belong" over and over and over again until someone (probably close to shoving it up where we belong) went and gave the player a good shove with their elbow and it went onto the next track.

She was a right devil my sister. She would have found that hilarious I think. Can't say the congregation did however...

Cathy

[Birchen]

Hello Cathy, Sarah and Mike

Had a bit of a laugh at your music choices and must say a laugh makes you feel so much better.

Terry seems a lot brighter today (even though the weather is awful) although his breathing does appear to be more laboured. Think this is to do with the fluid that built up on the lung but as he is not being treated for any lung problems not sure. Sweated buckets last night as he has just started his next course of chemo.

This forum is so good to express your feelings, good or bad, which everyone seems to have at one time or another. Really do think about everyone that is either suffering from this illness or who is caring for someone who has it.

Hope you all have a lovely weekend.

take care Lyn xx

[Birchen]

Arlene having read your comments we to had a very bad first experience where my husband was left for 4 days without any treatment being given for a massive fluid on the lung which eventually when it was drained left scar tissue and damage. We did make a formal complaint and they asked for this to be dealt with over the phone. I refused and we went to a meeting with the patient care team and the consultant (who we had never met even though my husband was in hospital 9 days under his care). The meeting was recorded and they said changes had been made to the system, only time will tell. The nursing staff are brilliant but there seems to be a total lack of doctors especially at weekends.

Terry has been in a different hospital for the last 2 days, this is a specialised oncology centre where he has had a blood clot on the other lung. He had a temperature of 39 so had to have antibiotics and is now to have an injection every day for blood clots.

We have been told that although the tumour in the pancreas has not increased in size two of the liver tumours have grown together so they will be changing his chemo from gemcitabine and capecitabine to oxiplatin and capecitabine.

Not really sure how this will go, will have to wait and see. Must say the staff at the oncology dept have been very thorough and quick to react to any changes.

Know that this is a bit of a set back when he has been doing so well but onwards and upwards as they say.

lots of love Lyn xx

PS thinking of you all

[Cathy]

Hi Lyn

Sorry to hear of your setback. It seems blood clotting is a fairly common occurrence with PC. A few of us on here have experience of dealing with these unfortunately, tho in my experience, once diagnosed and injections started, were sorted fairly quickly.

We have experience of oxalyplatin too as one of the three drugs in folfironox. The main side effect Jonathan experienced was tinglyness in fingers and toes which did seem to get more severe a few treatments in (generally subsides after treatment ends). He also on a couple of occasions had a laryngospasm (very brief) caused by very cold air when he went outside soon after the infusion ended. Tinglyness is also made worse by cold so now the weather is getting colder make sure Terry is nicely wrapped up and warm when he goes outside.

Hope all goes well with the new treatment.

Cathy xx

[Birchen]

Thank you Cathy for your reply, it really makes a difference to help understand the new treatment when someone else has first hand experience.

Treatment is not now due to start until Wednesday so we are having a weekend of fun and not going to talk about cancer or treatments.

Hope Jonathan is keeping well.

love Lyn x

[Cathy]

Hi Lyn

Well, I am all in favour of weekends of fun!! And it is good you have a date set as well so you can relax as much as you can.

Jonathan not SOO great at the moment - a bit of a setback with his recent scan (although not a great shock still very disappointing). I posted on my thread but here is a link to it.

http://forum.pancreaticcancer.org.uk/viewtopic.php?f=3&t=1034&start=75#p10738

Oh well.. Onwards and upwards as we say!!

Have a fabulous weekend

Cathy xxx

[InfoForMum]

Hi there, just to add to Cathy's post a couple of practical tips for the Oxaliplatin side effects. For Mum has been cumulative, but the bits and bobs to deal with it became second nature, so dealable with.

Cold Sensitivity - Affects you inside and out so Wrap up regardless where you're going and avoid cold drinks. Silk undergloves to go with nice thermal big ones, thermal undies, thermal socks, fur lined boots, hats and balaclavas. All worth having ready. Have gloves with grips near the fridge and freezer as accidentally grabbing the milk can cause a shock. Have same ready for driving as steering wheels are very cold int he morning. Drinking cold stuff can also shock your throat and case a spasm (much like the shock you'd get diving in a cold pool). IF it happens (doesn't for most people) it can't cause harm. Just keep calm and slowly breath through your nose til it passes. Also, to keep the fluid intake up keep lots of stuff out of the fridge and easily to hand. Had a tip if worried about stuff going off e.g. juice or milk. Stick an inch of water in the bottom of a glass and microwave for 30sec, then slosh the cold drink on top. Ta da, room temp juice/milk and warm glass to avoid hurty fingers. Also, watch out for not being so sensitive to heat. If you know something should be hot, use a mit/cloth as tingly fingers can lie.

Fumbling Stuff - The peripheral neuropathy can cause clumsiness as well as cold sensitivity. The gloves with grips help, but generally it's about conciously watching yourself pick stuff up as absent minded grabs for glasses and cups have caused a few spills in our house.

Having said all that everyone is different, so hopefully you'll get away with little or no side effects.

Take care.

Sarah

XXX

[Birchen]

Thank you Sarah and Cathy so much your posts have given us a lot more information. Trying not to worry to much but a new chemo is like starting all over again. Fragmin injections seem to be going well and not bothered at all now about doing them just the initial worry about hurting Terry. Will get some thin gloves to wear inside as that seems a good idea. The most worrying side effect was the spasm in the throat but our oncologist has assured us he will be there on call when Terry has his first treatment on Wednesday. Hope everyone is well. Speak soon love Lyn x

[Birchen]

Hello all. It was very interesting to read about nanoknife Sarah as we thought if you had spread to the liver there would not be any possibility of having this treatment. Did originally email London hospital when we first found out that Terry had PC and they have asked for CT scans. Will definitely have a word with our oncologist to see whether we can arrange to have them sent over as any chance is worth trying.

Terry started his new chemo yesterday, oxiplatin and capecitabine. Touch wood at the moment nothing to report although it took 6 attempts to get a vein as they kept closing down. Chemo went in well over 2 hour period and although he is feeling a little tired he is ok although not sure whether it is early days yet for any side effects.

Feel totally worn out as it is very stressful and worrying when he starts something new but he seems very positive at the moment which is excellent.

Hope Jonathan is ok Cathy and thinking of you all. Love Lyn x

[Cathy]

Hi Lyn,

Glad to hear Terry's first treatment has gone well. I'm no expert but when Jonathan had oxalyplatin the tinglyness was immediate so if Terry hasn't had that yet maybe he won't at all, at least for this cycle, maybe for future? Lets hope so. It is good he is feeling so positive. That helps I am sure.

Jonathan had his first Gemcap infusion today. So far so good, he just feels exhausted and fed up with his tummy pain. The Dr on duty there has increased his OxyContin again so hopefully that will give some more immediate relief and then(everything crossed) the Gemcap will sort out the rest.

All the very best Lyn and Terry

Cathy xxx

[InfoForMum]

Lynn, good to hear things are ok at the mo. I know what you mean about first cycle feelings. Was one of the iffier bits for both Mum and I cos it felt really, really real all of a sudden. From my point of view I was handing over the reins to someone else having pushed and prodded to get her there over preceding weeks. Was very, very protective. The specialist nurse confided I had intimidated her and she had felt like she was being interviewed prior to our first session, shortly before I bust into tears!

Not surprising you're both tired. Mum has mastered the art of naps. Helped by a double sided king size faux fur fleece blanket I found on Amazon for about £15 quid (BARGAIN and can send link if desired). She always has it next to her fave chair and makes time for a snooze in the afternoons.

Keep us posted and hope the symptoms are minimal and slow to turn up!

Cathy, got fingers crossed the GemCap does the trick soon for Jonathan. Take care hon.

Sarah

XXX