Hi! Snowy,
Today the "Domacillary Care" people supplied me with a Walking Frame complete with a seat so I can get about my acerage without falling over, also a modified wheel chair that is better suited for Deb, as when she is pushing me around Deb gets a crook back from the fact she has to lean down to push me about. I was rapped in the waay my Daughter got my pictures is the album. Any rest away from the home is lovely, but most trips away entail great distances and that means being a long way from our Hospital and GP, you must remember we travelled 230 kls to the coast house and thats a long way from our health group, but we'll see.
All my Love TREV

Hi Bell
It has been decided tonight that we won't be going to the time share next week. I spoke with Aaron tonight and it just works out better and he will have a better chance of spending more time with the rest of the family if we stay home. That, combined with the fact that Trevor feels a bit insecure at the thought of being 4 hours away from home and our own drs and hospital made the decision an easy one.
I think Trevor's post was a bit vague but the point he was getting to is the fact that we have to travel a long way to get anywhere.
We both got a lovely surprise to find that Peta had posted the photos Dad took down at the beach. They are nice shots and give a good view of the coastline and the beach that is only about 14', plus a 25-30' drop from our bed when we stay there. The conditions were perfect. It's a very pretty spot, especially when the water is calm and the sun not too hot.Looking forward to seeing your pics.
Love
Deborah

Hi! All,
Things are going along at a hell of a rate and apart from the dizzeness things could be assumed normal, I get my stick and walk around my acerage and check the dying plants and give them a bit of a water(which is naughty and against the law). Getting out in the sun is a great delight and and makes me feel that little bit refreshed, I may seem to be rambling on in these regards but my life (or what's left of it)gives me time to reflect and think of all the good friends that I post to and I can sit outside and think of all the good times I had preCancer.
I feel as though I only talk about myself but I do wonder how you are all getting along. How are you Paul, Bell? What about you Hagg? Cathy and Chaz, Shirl?? I'd like to know how you're all doing too you know.
Well I'll wait to hear from you all
Love
Trev

Hello Trev ,great to hear from you and can see you strolling around you acreage ,you always paint such a lovely picture when you are decribing your day .I always find a stroll in the garden a great place for reflection, you are doing so well Trev, please try not to get to deep as there will be a lot of good times still to come .I understand where you are at moment and last night when Paul was more settled he did a bit of reflection also. It was nice to just listen to him as he is not good at decribing his thoughts when he feels time is maybe not going to be in abundance.I was a little disheartened but knew he had to offload his feelings, you are better placed to understand that when you are taking heavier drugs and struggling you have feelings of despair and find it difficult to hang on to reality and just feel enough us enough.

I won't tell about giving your plants a wee drink poor things .

Pity we couldn't chanel a hosepipe down under as wee have more than our fair share of rain and with climate change flooding is becoming more of a problem ,what an imbalance .

Have posted an update this morning Trev and boosting myself up with my early morning coffee for another phone call.

We look forward to your updates Trev they are full of inspiration and family fun and a great learning curve for all of us .The photgraphs were fab and so lovely to see your family and grndchildren. also the different landscapes .One of these days I will master this and try and put some family photos on of our little group .

Love and hugs ,

Bell .

Hi Trev and Debs,

I did enjoy looking at your snaps and am glad that you added the last few of you both. I think you look wonderful and you continue to be such an inspiration, despite all the thoughts going on in Trev's head. I tend to spend far too much time reflecting on past and worrying about the future Trev - always said that my epitaph should read something about the woman who was always living yesterday or tomorrow and thus completely missed her life! lol.

Having said that, I have got much better at being in the here and now since Chaz's diagnosis and really try and enjoy every moment we have together doing normal things and try not dwell on the past or future. Like you, we have pottered about in the garden a bit this week. Chaz repotted our climbing plants a few days ago and yesterday built himself a new work table for his model making in the garage. He loves doing DIY and we have a joke that I have to inspect his work and give it the thumbs up. I love doing that because he takes such pride in building things.

At the moment he is entertaining himself with coin collecting on ebay (and having philisophical arguments with right wing Americans on the internet). He has always had a small collection and knows quite a bit about coins, but it is rapidly growing and I feel really sorry for the poor old postie who has to deliver his packages every day - they still do their rounds on foot here and we live in the highest road in Brighton! At least the postie gets the chance to look at our beautiful views of the sea!

Anyway, we have an appointment tomorrow with the cancer centers which I am dreading, but whatever happens we will be cheered by the arrival of Chaz's 13 year old son Alex on Friday for the Easter holidays. I can't wait to find out whether he has made any progress with Bella the girl he was telling us he fancied last time he was here. I can remember just more than a year ago girls were completely yuck - its amaing how quickly they change at this age.

Anyway I am rambling Trev, but please keep posting I always love reading your posts.
Big hugs
Cathy

This message has been edited. Last edited by: CathyS,

Hi Bell and Cathy
This is the secretary here. I have just posted Trevor's dictated post into your thread, Bell but thought I'd take the opportunity to catch up on his thread.
Reading back on what Trevor has written in his last post, I don't know how much of it is from his 'dream' state and how much is from reality. I think it's been a few days since he was last out in the garden and he certainly hasn't been feeding his birds as he has liked to do each day. He really hasn't been himself since that anaesthetic. He gets quite confused and forgetful and more fretful than ever. Things have to be done 5 minutes ago! ON top of that, he is so sleepy. We all know the sleep that goes with r/t, this isn't like that but he only just manages to get through his breakfast in the mornings without falling asleep so is straight back to bed. He's VERY wonky on his feet and twitches and shakes a great deal. This will all get mentioned to the dr tomorrow and I guess when it's all boiled down, it is a matter of fact that his systems aren't functioning properly so should we expect anything different? It's all too sad really but just a fact of our life these days.
He does love to read your posts and if he can't do it himself then I read them to him so that he's up to par on the latest from you all.
Cathy, how did Chaz'z appt go today? I hope your news was good and that you can put your worrying cap away for another few months. I had a chuckle about Adam and his love interest, Bella. If that was last school holidays ~ he's probably forgotten that he was mad keen on her. 13 year old boys are pretty fickle creatures!
Take care. Love from Down Under
Deborah
x

Hi Deborah ,you are a great secretary just like me but at least Trev can use his computer my boy will not move past a pen paper and calculator.Is of no matter he always paints a beautiful picture for us all whether it is in his dreams or otherwise .Paul's dream state seems to be fractious, loosing his car and booking tickets which have not arrived and last night we were evidently at some dinner and I was behaving really badly so bad he couldnt even tell me !!!.Paul always reacts like this to any kind of heavier medication .

I know the two of them have different cancer but when it comes to drugs and the body is weak and not functioning properly the symptoms are sometimes similar .

Will jusy carry on in your thread Deborah now I am here .Saw registrar at clinic today and it was an ordeal to get Paul there as he could not keep his eyes open .He checked him over and said he could see nothing to worry about so it was probably RT toxicity and nerve damage .His mouth kicking off in a mess could be due to the fact he is run down and also slightly dehydarated although I am pushing fluids like a tap but if I Overdo it, it comes back up so difficult even though they have anti nausea in syringe driver.

Basically asked every question under the sun about this pain but did not get a straight answer not sure they are sure themselves yet.So our script is to truck on with pain meds and mouth stuff then try taking him off driver and see if things maintain under control with tablets .If pain does not subside they will then need to go down the route of biopsies so back to a wait and see .Did some bloods and that was that. So have to take him back next week when our specialist will be back from holiday .

To be honest we really do not feel any further forward .But at least he is reasonably comfortable but cross he is back to sleeping away the days .

Well Deborah hope today has been a better day for Trev. AND.........that famous leg of yours with the new Tat is coming along nicely for a poster photo.

Been an very sad time recently on the forum with Nigel and Elaine but felt it was kind of special that the two of them got to do what was closest to their hearts and were able to do so .
Love to you both ,

Bell and Paul.

Hi Trev, Debs (and Bell- I know you read this thread regularly for Trev’s updates),

I hope Trev has had some success with the optical folks today.

Apologies for not posting yesterday, but after Chaz’s appointment we took a drive along the coast with the lid off our convertible as it was a beautiful day and went to visit one of Chaz’s friends who had twins at Christmas. They were a slightly unplanned addition to their existing family of 2 girls who are almost teenagers, but Ade, Chaz’s mate is delighted as although he is no longer a young Dad, he finally has a boy. So we sat googling and gurgling at babies for most of the afternoon and catching up as we haven’t seen them for ages – new dad who used to play in a band with Chaz, has not had the energy to leave home!

Sorry Trev I am briefly hijacking your thread! Well Chaz's appointment went ok in as much as the ENT consultant did a very thorough check of his lymph glands, took at peep at the site of his original tumour site and said it looked good and that Chaz is really lucky as he has made such a good recovery from treatment - taste buds are back and he even has saliva - he has been taking salogen on and off for a while. I have to agree Chaz has been very fortunate compared with many on this site.

However, I was really not as reassured as I feel I could have been because of the very cursory look given to his left tonsil which is where he has been having a bit of trouble recently. I raised the issue and asked why he would be getting a sore feeling there as it was not the main focus of treatment and got the response “I have no idea”, but I don’t feel he gave it a really good look and would have felt more comfortable if he had used an endescope. He said that the neck was the most likely site of failure and that second primaries are very rare and that his mouth looked normal, but that is what the same consultant said the first time round when he really took too long to make a diagnosis (2 months!). His opinion on second primaries doesn’t really square with what I have read, and what other patients who post here and elsewhere have been told by their teams. I am just not comfortable with the fact that we are only being seen once every 2 months so soon after treatment and that when we are seen the check up seems so cursory.

There were a few subtle references to the fact that they wouldn’t be able to do much if there was a recurrence in the mouth – I understand that perfectly, but still think that if a second primary was spotted really early, there is more likelihood of a treatment option being available. I am a risk manager at heart and think prevention is better than cure, but that is not really how the health service has traditionally operated in this country. Anyway, obviously I haven’t raised any of my concerns with Chaz and I think I will have to go with the flow for now and just quietly monitor how frequently Chaz reaches for the oramorph over the next week or so and try and evaluate whether there is any real cause for concern. I think I will have a word with the chief clinical nurse about my concerns before our next appointment and see if she can make sure he gets an endescopic examination at our next appointment. She has been really supportive in the past.

I know I am going to find it difficult to leave Chaz and go off to Kenya for work. I find I really worry about him when I can’t keep my eye on him. Debs you asked what my work was I do quite eclectic consultancy work for charities. On this occasions its for Plan – I know they operate in Australia. A few years ago they adopted a new approach that focuses on helping the communities they work with undertake community development programmes. Part of this involves helping community members, including youth and children, to become more aware of their rights and helping them participate in governance processes – demanding health and education services from their local and national governments. I am going to Kenya to help local staff undertake some research and document stories of change – the idea being that they can probably learn from formal reflections on their past experience and apply lessons to future work to make it more effective. I love such engagements as although they are hard work, they are always extremely interesting and lots of fun. Visiting poor villages is also a really good reality check as it makes me very aware of how privelged I am to have the worries that I have outlined above, when many people on the planet have to spend all of their energies making sure they have enough food for the day!

Anyway apologies for the ramble and for seeming so obsessed with Chaz’s treatment, but I can’t help it and its helpful to write it down as I dont really have anyone around I can talk to at the moment. I am a worrier by nature and I just love him so desperately that I want everything possible to be done to keep him happy and healthy.

Anyway I must get on and do some work and then prepare for the arrival of a 13 year old boy - you are probably right I am sure his affections will have changed by now.

Big hugs and thanks to all for your kind support.

Cath

HI! All,
Well me again and not feeling 100% and after being in the Hospital with another Kidney Attack but this one was very serious, and the stone had moved down into the Bladder, so they put me onto antiBiotic to ease the pain and then they gave me 2 units of plasma over 10 hours and then I was sent home at 1100amon sunday morning. We have had our son staying for a couple of weeks and that with our daughter, who has moved in permanently it has been real joy. Oh what a great family I have, I have been blessed with a loving family and couldn't ask for more.
I have resorted to takeing 2 Diazwpam's a day now as this seems to calm me down and they are not adictive so anything that helps me slong I am happy with.
(Now I'll give you the factual version! Trevor has got things a bit mixed up) Trevor had intense pain on Friday night with swelling in his groin, both passed fairly quickly but I wanted to go to the hospital to get it checked out. Turns out he has a pretty full-on UTI. I believe steroids mask the symptoms of infection so he had no sign of that. He has a pseudomonas infection which the dr said once you've got it's pretty much there for good, hard to fight and resistant to most antibiotics. That's what he had after his op last year and again the other week so I guess it's just a matter of flaring up and being caught before it gets a good hold.
The dr thinks the swelling and pain were caused by the stone moving into the bladder and causing a back up of fluid behind it. Once it got through, the signs subsided.
In the midst of checking test results, his bloods from Thurs showed haemaglobin at 77! Can't imagine why he couldn't keep his eyes open. He had IV gentamycin Fri night, then went back for admission Sat morning for more gent and also two units of blood. He had to have the antibiotics again Sat night and Sun morning so they kept him in. He was a new man for all of 10 mins when he came home and then he faded quickly!
He's been very emotional however I've decided to give him the Diazapam twice daily instead of whenever and that's seems to have calmed him down. He's doing it tough, poor thing but having the kids around has been lovely (will try to put in another pic taken yesterday), although he thinks about them and that sets him off again!
Bell and Cathy ~ thanks for your responses. I've been trying to keep a low profile (feel as though I'm clogging up the board) but once Trevor is a bit more 'with it', he'll have some answers for your posts, I"m sure.
Take care and love to all.
Trevor (via the secretary!)

Hi you two,had a feeling things had flared up when you were not about .So sorry Trev that these infections have been ongoing they are so painful and bring you right down it has been a real toughy this last month or so and I do hope this settles down soon .

Deborah understand how you are feeling I have not been updating about Paul either for a few days ,things here still icky also and he is just out of it in bed and emotional so have just been getting through the days quietly with him and hope next week they can improe things when the holiday period is over.

Hope this week is an improvement .

Love Bell and Paul.xx

Hi Trev and Deb, sorry to hear about your infection and stuff Trev. I'm glad you've got all your family around you to keep you fighting. Good on you. Hagg.

hi Trev Debs sorry to hear about kidney infection but lovely to hear you have the kids move in with you . Its great that you can all be together and enjoy each others company 24/7 .nice that you all want to be together. I have been in France for a few days with niges brother (my o/h) and his mother . thought about you all a lot whilst i was there. Dont keep a low profile Debs(or you Bell)this forum has kept me going last few weeks . I would miss the daily fix....

Hi All
Well I thought Trevor would be able to put a post in by now, but alas.
It's been a roller coaster of a week but the ride just seems to be taking us down at the moment. Damn it.
Trevor is very, very (make that VERY) tired. He wants to be doing things but is flat out putting one foot in front of the other.
On Wed morning we had planned to have an outing to Ikea (don't know if you have that company over there ~ flat pack Swedish furniture place) and after his sleep we headed off. It was a beautiful day and with the wheelchair to get us from one point to another, we made it through the store, drove through a newly opened underpass that has been a major piece of roadwork here for a couple of years on the way home. That gave Trevor a boost because he gets pretty excited over engineering stuff.
That morning the bulge was present in his groin again and since it had passed on Friday night, I thought I'd just keep track of it and go with the flow. It didn't bother him at all that day but on Thurs morning I left a message with the dr just to check if we needed to follow it up.
Trevor didn't have a good day generally yesterday and as it turned out we had a visit from the palliative care nurse in the arvo. He was concerned about T's very (ditto the VERY from above!) distended stomach and his general condition. He was preparing to give him an enema when the dr called. He put everything on hold and wanted to meet us at the hospital.
It turns out the bulge is a hernia. Can you believe it? What else does this lovely man need? Fortunately it settles when he lays down so it will be left alone. I had been concerned that he has pins and needles in his right leg and thought the bulge may have been constricting things. Not the case apparently. The dr thinks that 'things'in the abdomen are causing pressure on nerves, hence the p and ns. Great!
As it turned out after exam, no enema was goign to change anything, the air and fluid trapped in his abdomen are causing the bowel to go into slow mode so anything that was going to get things moving has to come in from the top. So since yesterday evening he has drunk a litre of prune juice on top of multiple doses of Movicol. Here's hoping for some success.
All in all, we have a pretty unwell puppy. He would love to be able to post however he sits at the computer and then doses off so it's a bit difficult. Aaron showed us today how to increase the size of the font to make reading on the computer easier however Trevor's just too fuzzy in himself to be able to take advantage of that.
So there you have an update from our house. Thanks, as always for your posts. It's a real comfort to know you're all out there.
Take care, All
Love
Trevor and Deborah

just remember there are many of us who read these message boards, but do not post that often.

for instance right now there are 4 members on here with 104 guests.

hope situation with Trev improves to where he can enjoy the family more and experience another outing for which you have done such a good job on getting him out of the house.

Like Pete said, many read and do not post. I read everyday with a heavy heart. I know, as many others, what you are going through. It is an "elite" group, which no one wants to be a member of but we are there with love and strength. We (and there are many) walk with you.

Noemi