Pessimistic and no faith!

Good afternoon. I'm guessing you're having the most amazing time in scilly now. That's awesome. I'm jealous thinking about it. How lucky were those passengers to sample your baking and how kind was you in sharing it. Enjoy your time you have there.

My scan went well. They used the PICC line so there were no problems. It would seem there is no consistency and some of them just do not know how to use a PICC line. So thank goodness I had no needles and no anally neither lol Saw Lucy, oncologist, yesterday. She said the scan shows some growth but not much and it's not yet a threat. She said the tumour is the same size as it was in March. She did say that the tumour is pushing up more against the rib and should I develop pain she would try zap it with radiotherapy.

Lucy said there was shrinkage but they are not sure what shrunk it. They won't give me any more radiotherapy in that area as the tumour is too big and it made me so ill last time. She will give me another round of the chemo, gemcitabine. But oncologist dr hennig who treated me in hospital said he believed this chemo was one of the causes of my lung problem. Lucy said she is still prepared to give me it. In small doses for longer period and with steroids and if I sign a special consent recognizing the consequences. Hmmm  much to think about. There's still one other chemo to try although she said the likelihood of it working is extremely slim. 

She had a look at the burns. She didn't know. Charlotte forgot to tell her. She said she doesn't want to proceed with any treatment until the wounds have healed some more. Although she openly admitted she didn't know much about wounds there was an area she was concerned about that she said was redness and she was concerned it was the tumour broken through the weak skin. Given that the tumour isn't a threat at the minute she has rebooked me and appointment in a month to give me more time to heal. I really hope you get good news about your scans. 

What a palaver huh lol A lot to take in. Today I feel tired. I've had too much on when I should be resting from Scotland. Today I shall laze lol 

Enjoy your day/break Eddie. And Sheila and grandkids too. Hope you have sunshine. We have here. The DN said it was freezing out mind. Take care X

Hi Marie,That's such good news, having someone who is good with  PICCs helping you through your scan, shouldn't be a lottery as to their competence. No needles yippee, 

Your oncologist Lucy sounds reassuring and open, it's good to hear your tumour has only grown by a small amount, and she has discussed what likely treatments they have for you when the time comes, which I hope is no time soon, fingers crossed for no bone pain either, and no RT, I remember how awful it made you feel the last time,

I  remember your lung condition,  pneumonitis, caused by chemotherapy, being offered the same chemotherapy treatment again, especially as it worked well the first time seems a good option, and they will be much more aware of your risk with PNA, which steroids and a less aggressive treatment programme indicates, certainly something to think about.

Good to hear your seeing your oncologist again in a month, hopefully this will give your burn time to heal, and you plenty of time to think.

It's fab here, a long, long, long way away, but so worth it. It's beautiful and weathers fab too, warm last night and perfect today, we've even been in the sea, even Sheila, it's very shallow and surprisingly warm, little ones have long since gone to bed and we won't be long either, 

love Eddie xx 

Good morning. Yes, so relieved at no needles and you're right there was some good news from the oncologist but it will be all based upon as to whether or not these burns heal and as to whether or not the tumour has broken through. Anyway I shall cross that bridge when I need to huh. 

I am so pleased you are having a good time. It all sounds so wonderful. And you got to swim, Sheila too, that's amazing. Hard to believe it's warm. Awesome. I watched a TV programme last night Tiny Islands. Scilly was on there. How utterly beautiful. The beaches were stunning. It sounds like it's done you the world of good. So, are you home now? If I remember rightly you had to be back for Monday. 

Going to West Bridgeford today. Browse the charity shops in one of my favourite haunts. And then we are going for a Sunday roast at a local country pub. Whatever you may be doing enjoy and take care X

Hi Marie, I'm guessing you've been to West Bridgeford, hope it stayed dry and you found something nice, or even a few nice things and all at a bargain price, and to a good cause. and a proper Sunday roast. Marie, there's a cream they can apply to burns to speed up healing, as strange as it sounds a wound can continue to burn in places for some time after, I'm sorry I can't remember what it's called, your nurse will, she most probably is already using it, as always I will have everything crossed for you, you have time to heal and think things through, and time to get away too.

I am jealous about your Sunday roast,  we forgot to take any food for the train journey home, so it looks like something from the buffet, I will be the taster, make sure its safe for the little ones, won't get home till after 10pm and they do sleep better after a meal, not sure they'd last 11 hours without food.

Marie, what a wonderful place the Scilly's are, as a getaway, somewhere to relax,  unwind and think, it's perfect, as long as Mandys consultation goes well tomorrow, we are hopeful, we'll be going back Friday,  we'll be going with Mandy and her boys 

I couldn't believe Sheila, went in the sea, she did take my phone off me first, life's much easier if I don't take any photos, I've never seen her go in before, must be the Isles, and the grandkids,  she's been fab, not a hint of her SAD, I think you would love the Scilly's Marie.

love Eddie xx 

Good morning. I'm so glad you all had such a good time in scilly. I really hope Mandy's assessment all went well enabling you to all go back. That's awesome news. I'm really pleased Sheila went in the sea. It would have done her so much good. It sounds a beautiful place. I think I would love it too. 

Had a lovely walk round West Bridgeford. Unfortunately a few of the shops were shut. I was surprised because they usually open Sunday and close Monday round here. Sunday roast was yummy. I had beef. Was lovely. 

Yesterday PN Helen and a senior DN came to visit. Helen said that because me having further treatment depends upon my wounds healing she is referring me to tissue viability to see if they can put anything on there to make it heal quicker like you said. Although they believe they're doing that already anyway. They've also said they will reinstate the DNs coming to the house to redress for now so I don't have to go to the GPs. That's some good news huh. 

How are things with you and how are you feeling X

Hi Marie, good to hear you enjoyed your walk yesterday, though how inconsiderate not to open up for you, Sunday roast beef, lucky you, we had the railways "finest ", sandwiches, we were hungry, LOL.

That's great you have the DNs back to help with your dressings and the TVnurse for the burn, never needed the TVnurse, but have worked with them occasionally and they are a big plus with burns. and less medical trips, sounds like a win win to me 

Mandys consultation went well, her scan showed, as hoped the RT had, and continues to work very well, so much so their giving it 3 more weeks to do its job, Mandy, will have a scan on the 30th  and see oncologist the following Monday, if RT is not working as well,  Mandy will have surgery that week, everyone is happy and hopeful, but no guarantees 

The Scilly's are fab, beautiful, relaxing, warm and friendly, going back at the weekend, off to Scotland tomorrow with Lesley to see her family, taking 2 of our girls who will be dropped off in Edinburgh, then another  170 miles north for Lesley and I, will also be seeing someone from the forum.

Fab news with Mandy, not so good for me, but that's ok, one annoying thing, got a letter from Aurora Worksop, where I do my exercise groups, I've had my quota and  not allowed any more, yippee, there's always something.

love Eddie xx 

Good morning. That's great news for Mandy. So pleased for her. Please pass on my well wishes and here's hoping all goes to plan. I'm guessing you're in Scotland now? Awesome. I can't believe all that you do Eddie. You are Superman without a doubt lol I hope you are having a super duper time. And that's ace you meeting someone from the forum. Is this someone you've met before? Fabulous and I hope it all goes well. 

Yes, I'm glad too the DNs are back. How long will it last? Who knows lol One of the DNs rang me to update me that TV had been back in touch. They have a new dressing for me. They also mentioned debridement and said somebody would be in touch to discuss further. Still waiting on that one. 

Had a quiet week. Not felt the greatest. The usual tummy and bowel issues, constipation! Not eating much and constantly sleeping. It seems to be a normal part of my life now. Here's hoping I pick up soon huh. 

Have you had bad news? You said good news for Mandy but not so for you. I hope you are as well as can be under the circumstances. That's not good the letter from Aurora. I can't believe there's a quota on that which is good for you. Such a shame and I'm sorry to hear that. What plans have you today? Enjoy and take care X

Hi Marie, and thank you, have passed your best wishes on, Mandys news was a relief, having proof of how well things are working really helps.

So sorry your not feeling well, and off your food, hope your drinking enough and taking something for the constipation, and if you need to sleep then do so. I was hoping your digestive system would be a little better, I find even when I have no appetite, just having a little food, half a banana say, gives my stomach and Bowel something to work on  so they are  less unsettled.

I'm glad  you have the DNs on side, and the TV nurse too, only ever seen debridement done once with very good results and a different dressing too, all positive 

Got to Scotland yesterday,  home tomorrow, went with Lesley and 2 of our girls who did 90% of the driving, seeing Lesleys family, was a difficult and emotional visit but necessary, and met a friend from the forum for the first time, which was lovely.

Bit of a downer regarding Aurora, was going to say/do allsorts about it, but couldn't be bothered, my bad news is not important, focus on yourself.

love Eddie xx 

Hi Marie, Sorry to read you are still having stomach issues. Eddie is right, I too have a dodgy stomach but if I don’t eat, it is worse. A little often seems to work better than sitting to a large meal. Also I drink water constantly, especially if I feel tired as it seems to perk me up quite a bit. Maybe you could try it and see what happens!

Good afternoon. I don't think my digestive system is ever better. I'm either constipated, feeling sick, diarrhea and full of gas lol I do drink but eating can be a struggle. I do have laxatives yes. They've been slow to work this time but work they did yesterday. I managed to eat a meal yesterday evening and some fruit this morning. I'll keep on trying. I sleep a lot. But it does effect my motivation levels and can impact on me going out. Although like today I'm in waiting on the DN to come and redress my burns so not able to do much anyway. 

Glad Scotland went well even though it was difficult seeing Lesley's family. I'm sure all things considered it was still great to see them. Happy to hear the meet with the friend from the forum went well too. That's wonderful news. I'm guessing you must be home today. I hope you're resting, I bet you need to after all them long journeys. No doubt you will be off again soon lol

Yes, I think Aurora are out of order too. I believe you should complain but fully appreciate the energy needed to do that. Maybe you will feel better able another day. I know how much you enjoy your exercise and having it just taken away like that is unacceptable. And your bad news is important!! It does us good to get things off our chest so give it the bad news all you want. 

Enjoy your day and take care X