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cestrian
Posts: 220
Joined: Mon Jun 03, 2013 12:20 pm

Re: My husband massive pleural enfussion

Postby cestrian » Mon Nov 04, 2013 11:49 am

"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 <http://youtu.be/EzErh_s62Wk> 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
Posts: 688
Joined: Sat Dec 08, 2012 8:48 pm

Re: My husband massive pleural enfussion

Postby Slewis7313 » Mon Nov 04, 2013 12:05 pm

Brings back memories Mike! Keep the positives coming.

Steve
X

cestrian
Posts: 220
Joined: Mon Jun 03, 2013 12:20 pm

Re: My husband massive pleural enfussion

Postby cestrian » Mon Nov 04, 2013 12:16 pm

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
Posts: 287
Joined: Tue Aug 14, 2012 3:29 pm

Re: My husband massive pleural enfussion

Postby PCUK Nurse Dianne » Mon Nov 04, 2013 12:42 pm

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/HowWeCanHel ... tions.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
Posts: 788
Joined: Fri Mar 15, 2013 5:43 pm

Re: My husband massive pleural enfussion

Postby Cathy » Mon Nov 04, 2013 1:17 pm

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
Posts: 77
Joined: Thu Sep 05, 2013 1:53 pm

Re: My husband massive pleural enfussion

Postby Birchen » Mon Nov 04, 2013 6:14 pm

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
Posts: 332
Joined: Mon Aug 19, 2013 12:01 pm

Re: My husband massive pleural enfussion

Postby InfoForMum » Fri Nov 08, 2013 9:28 am

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
Posts: 220
Joined: Mon Jun 03, 2013 12:20 pm

Re: My husband massive pleural enfussion

Postby cestrian » Fri Nov 08, 2013 12:35 pm

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
Posts: 332
Joined: Mon Aug 19, 2013 12:01 pm

Re: My husband massive pleural enfussion

Postby InfoForMum » Fri Nov 08, 2013 1:00 pm

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
Posts: 788
Joined: Fri Mar 15, 2013 5:43 pm

Re: My husband massive pleural enfussion

Postby Cathy » Fri Nov 08, 2013 2:02 pm

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
Posts: 77
Joined: Thu Sep 05, 2013 1:53 pm

Re: My husband massive pleural enfussion

Postby Birchen » Fri Nov 08, 2013 7:16 pm

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
Posts: 77
Joined: Thu Sep 05, 2013 1:53 pm

Re: My husband massive pleural enfussion

Postby Birchen » Fri Nov 15, 2013 8:51 pm

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
Posts: 788
Joined: Fri Mar 15, 2013 5:43 pm

Re: My husband massive pleural enfussion

Postby Cathy » Sat Nov 16, 2013 11:14 am

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
Posts: 77
Joined: Thu Sep 05, 2013 1:53 pm

Re: My husband massive pleural enfussion

Postby Birchen » Thu Nov 21, 2013 8:01 am

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
Posts: 788
Joined: Fri Mar 15, 2013 5:43 pm

Re: My husband massive pleural enfussion

Postby Cathy » Thu Nov 21, 2013 5:45 pm

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/vi ... =75#p10738

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

Have a fabulous weekend :)

Cathy xxx