Pessimistic and no faith!

Morning Marie,  I posted you on friends xx

Good morning.

PN Helen is on holiday back tomorrow. I will explain to her all that's been going on. I do have diminished appetite again. Still eating but more child portions. Tummy is a little upset again as well. However, because I'm on chemo and the 8 steroids means I have picked up again. It all gets very confusing as to what the issue actually is. I'll keep going and give things a chance to settle and take it from there. 

Well, dare I tell you about chemo yesterday lol Arrived, treatment wasn't ready. They advised I went back home it would be a couple of hours or so. This we did. Only home half an hour to which they rang to tell us to go back treatment had arrived. Got there, picc line still not working. Registrar came to try get it working. Had me doing exercises. Quite strenuous. I don't mind a little exercise but explained to him I had restricted mobility due to laboured breathing and enough was enough. Didn't work anyway and he made a decision to proceed with treatment anyway. I said look what's my options? He said next week if same problem I will have a scan to which they will make a decision. I feel a fight coming on as I believe this will affect treatment next week. Got home absolutely exhausted isn't the word.

Anyway enough of that. Hope you got my response email. Adorable!! Really glad you had a lovely visit. All sounds so wonderful. Curry and crumble! Oooooh yes. Delicious. 

Oh no a parking fine. That's rubbish. The darn parking at the hospital. It's an absolute nightmare lol We always struggle. Nightmare!! Sorry to hear that happened to you. Dave got one too for driving out of the hospital into a bus lane. Not very happy lol

How are you today and what news have you?

That's terrible. Have they said what the reason is? That's not fair and yes, you're probably right, cost no doubt. I've a funny feeling it's not going to work for me either unfortunately.

Take care and enjoy your day the best you can.

Hi Marie, child portions are fine,  80% of my meals are small, and I skip a few as well, but I'm happy the steroids do perk you up, it is a little confusing and hopefully  Helen has some answers for you.

Marie I would seriously think of having my treatment done at another hospital, you've put up with a lot more from them than I would, more than anyone should have to, and knowing your physical limitations and that I have never heard of a PICC line being cleared by exercise, am at a loss as to why they would think it would work for you.Is your consultant back next week Marie, you should contact her and explain everything to her, you fight your corner, you've put up with their incompetence and lies too long, not surprised your physically and emotionally exhausted.

Thank you Marie,  I read your Email, and replied, more than happy to share my friend, the weekend was wonderful, and I'm hoping Lesley and I will get to visit a few more times together.

Marie, I got 2 parking fines lol, I just paid them, that's 3 in 4 months, it will be cheaper getting a taxi soon, busy day today, hospice and counselling, therapy, lunch with friends, massage and bloods, we have Mandys chemo on Thursday, and maybe a massage but otherwise nothing till next Monday, so lots getting up late, lovely. 

What are you hoping to do this week, any plans or just see how it goes. I nearly forgot the metastatic group my friend has been working on for 8 months now, with a tiny bit of help from me starts this week.

I hope Dand A and of course you are ok.

love Eddie xx 

Hi Marie

It's strange, but I have been thinking along exactly the same lines as Eddie, regarding your picc line. I have been wondering if you could change hospitals for your treatment at least. They really do put you through the mill every time you go! It must really knock your confidence every time. It's no wonder you worry about going!

It's not good enough, you shouldn't have to put up with this. See if you can have a chat with your oncologist, and insist on better treatment!

Thinking of you.

Love and hugs

Kate

Good morning. 

Helen never called yesterday. Wonder if she's back to work or not. I'll give her today then telephone the office. Yes, I do believe too the steroids pick me up. Not unduly worried about the eating. At least still eating.

When I saw oncology I mentioned the registrar upped my morphine. Well apparently he has not. He issued me the same prescription lol Deary deary me. So I do need to speak to Helen. Talk about placebos, I've been taking it thinking I'm on an increase. 

Massive thanks to both you, Eddie and kates concerns about my picc. I really appreciate your thoughts and ideas. You're absolutely right and as far as I'm aware things will be sorted Monday. If not I'll telephone oncology and up the anti. They do absolutely exhaust me and you're right it's unacceptable. It will be sorted, it will have to be, enough is enough. 

2 parking fines? Oh no lol Doesn't surprise me hospital parking and all. Dreadful! Wow you had a busy day. Hope you had much fun and it all went well. Good luck with Mandy's chemo today. Hope it all goes well and give her my love. 

Yesterday went into Sherwood. Browsed couple of shops and got some yummies from the bakery. Today I'm at that Hayward House. Not sure what they will do. I'm just about to fill out the assessment form they've given me. Not feeling too bad. Breathing a little laboured but seems to be the norm at present.

How are you today? Xx

Thank you Kate. Responded in Eddie's thread. Really appreciate your thoughts X

Hi Marie,  doesn't Helen have colleagues, my DN, always has cover should she be unavailable, I'd call them now, and grazing is fine, so long as you're eating and your tummy has something to digest, that's good.

Problems with meds,  oh dear, oh dear, oh dear. It's a pain in the, you know what, getting what they prescribe, when they prescribe it and at regular intervals after, I'm currently trying to get a prescription, cancer meds, so important, I've only had the initial supply and was told you can get your future supplies through your GP or urology, no I can't,  and oncology isn't answering, as I'm there now with Mandy for her chemotherapy, I've been to see my oncologist secretary and left a letter!!!, 

What are you going to do with your morphine dose Marie, take what the registrar suggested, or what's on the prescription, are you ok on your present dose. 

Fingers crossed your PICC is sorted on Monday, and things improve thereafter,  but if not  nobody can say you haven't given them a chance, or you have no right to complain.

Parking fines paid, and love passed on to Mandy, and Hayward House today, form filling, that's normal, im sure there will be many therapies and activities available, I  know it feels like somewhere you hoped to never go, but I've been going to mine for 16 months and always enjoyed being there.

Sherwood forest in the sunshine sounds lovely, and the compulsory yummies as well, but no pub meal, was Amy doing dinner, im glad your feeling ok my friend, as am I

love Eddie xx 

Good morning, good morning. 

Helen is the PN and when she is off she tells me to ring the office. There are other nurses to speak to on the telephone but nobody comes out to see me. Helen is coming out to see me tomorrow. The DNs are still just coming out to redress the wounds 2 of the wounds are fixed now but one is still slow. They come every Thursday and Dave does Monday. 

That's disgusting you not getting your much needed medication. That's absolutely dreadful and you shouldn't have this agro. You honestly wonder what a state they're in sometimes. Just dreadful. I hope you got it sorted. I had a chat with Helen re my morphine. Oramorph helps me greatly in that it calms the tumour inflammation and less uncomfortable, it helps me to breathe better. The pain hasn't been that bad to be honest. In this respect we are keeping the Zomorph at 20mg and I will continue with the Oramorph. Helen said when it comes to I am taking more than 4 doses a day of Oramorph we will need to consider upping the Zomorph. 

I went to get my bloods done. It worked first time. This guy did it and he told me he has a knack that works every time. He has done it before and absolutely no problem. It made such a difference to be stress free with it. Went to Hayward House. It was just an assessment re my health and then they offered up a list of complimentary therapies I can attend. I've come away to think about it. Chemo today. Not sure how that's going to go. I'm not there till later which I'm glad of and I shall ring them beforehand to see if treatments arrived. If not I shall be asking them to ring me when it does to save on stress. 

Oops sorry I didn't mean Sherwood forest. We live in Sherwood. Just a place in Nottingham. They have a nice high street. Amy cooked beef roast yesterday. It was so yummy. I managed to eat it all. I'm guessing because I'm on my 8 chemo steroids for 3 days.

Anyway enough of me droning on. How are you and yours and what news have you X

Hi Marie,  sorry about the mix up with Helen,  I have a few things on my mind, and I get dafter every day.

Good to know Helen's popping in Tuesday, she's far more knowledgeable than me on pain relief, and I'm so pleased they are helping, and your still on a relatively low dose with a pathway to follow, did you talk about the steroids?.

Hooray for the fella at bloods, I  hope you asked him what shift he's doing for the next time their due, but that's awful Marie, having to phone ahead to see if your chemotherapy treatment is ready, but I fully understand, you should have them send a photo of it as proof.

sherwood, sounds lovely, a nice high street, a park on your doorstep and the pudding pantry, fab. Wow Amy's roasts are getting famous on the forum, when you say you ate it all, I'm sure you don't mean the whole thing, that's great your steroids give your appetite a boost, and I hope your chemotherapy goes/went smoothly, and as stress free as possible.

Good to hear you finally got to your hospice, I can understand it seems like a big step, but it doesn't mean anything other than your condition isn't curable, I just checked, I've been going to mine 17 months, and was there today for counselling, to talk to one of my PCNs and catch up with friends, I took some more cakes from my freezer too.

No reply to my voicemail last Wednesday, regarding my meds, or the letter I gave to  my oncologists secretary, phoned a couple of times today with no answer, will see the secretary again Thursday when Mandy has her chemotherapy 

I need a colonoscopy, passing too much blood, booked for tomorrow, my MDT has been put back a week, my cardiologist has my scan results and wants to see me first thing Wednesday. so pretty normal here. I have therapy, catch up with friends, a massage and camera up the wotsit tomorrow  lovely.

love Eddie xx