Pessimistic and no faith!

Good Evening Marie, so good to hear your OK, there's a few of us been having problems getting on the forum, good thing we exchanged emails so we can stay in touch LOL 

Sorry, but not surprised your still having tummy/bowel  issues, the laxatives will help but eating regularly is so important, little and often works for me, after months of skipping meals. I never said  but I lost so much weight,  they thought of feeding me via a tube, i I suddenly started eating a little better.  Marie, what do you mean by, not able to eat?, 

I think your best way to get motivated again is to do somethings, a little like fatigue and exercising your way through it, choose something you enjoy and push yourself to do it, l was thinking of giving Poppy away, that was the kick up the backside I needed,

Good to hear Helen's advice has helped, let's hope this tweak lasts some time, and you do have a tendency to do too little or too much, I may have mentioned it before, and absolutely make use of the wheelchair,  getting out and about will help your fitness and motivation. and it looks like your burns are coming on well, still no TV nurse.

Sounds fab, The New Forest, it's beautiful, and understandable your wary of going, well you've got 10 days to work on your concerns, it would be the best thing you could do to help you through your issues, l never say, but I carry a rucksack everywhere, with a change of clothes and loo supplies. Takes away a worry.

I was at Aurora Tuesday, meeting friends, and the new boss asks to see me, oh dear, hope I'm wrong but I think anyone from outside Bassetlaw are being marginalised. Tuesday was Mandys scan and my PSA test, not good, Mandy and I will get our scan results on Monday, we both have our MDT meetings then. Sheila flys off Wednesday for four months and idiot brother goes Friday to Portugal for 10 weeks, so home on my lonesom, yippee. What will you be doing this weekend Marie, I want to be impressed, take care.

love Eddie xx 

Good morning. I don't think I have your email Eddie. I remember giving you mine but I don't think I have yours. Maybe drop me an email so that I have yours please.

I didn't know you lost all that weight. I'm sorry to hear that and glad you are doing better. When I say I'm not able to eat I am repulsed by food. I have no desire to eat, I have no appetite and don't feel hungry. I have to force myself. I feel sick at the thought of food and can sometimes be sick. It's awful. I've been trying the little and often and you're right it does help. If you don't mind me asking what do you eat? What is a typical day like for you?

Thank goodness you didn't have to give Poppy away. What a dreadful time for you. You have done so well to motivate yourself. Well done you. Dave took grandson back home Saturday so didn't get to do much. In the morning went to get my PICC line dressing changed and it wasn't working. They stressed me again in their attempts to get it working only to conclude I would need an xray and that unblocker stuff putting in. I've got that to sort. I went for a walk and managed 3/4 of it with the last leg in the wheelchair. Not bad huh. Yesterday we took a walk along the trent. Unfortunately I had to do most of it in the wheelchair but it was still a lovely walk and did me good. Unfortunately today I'm in waiting on the DNs to come and redress. Still no TV nurse no. Going to have a soak in the bath. 

I'm sorry to hear your psa was not good. If it can I hope it improves. Good luck with both yours and mandys scan results. I really hope you get some good news fingers crossed. Is Sheila going to Australia if I remember rightly? Wow!!!! I hope you are going to be okay. You sound like you are. Clearly being alone is not a problem for you lol How lovely Portugal for 10 weeks. That's awesome. I hope he is okay all things considered. Anyway, how are you and have you had a nice weekend? Take care X

Hi Marie, email on its way, no problem 

Don't worry about my weight loss, I could afford to lose it,  and I eat a little better now, which is not what we can say about you, though I'm happy to hear your eating something, have you thought about seeing a therapist.

A typical day for me is. a handful of  berries 8 to 10 with about 90 grams of yoghurt for breakfast, lunch is 1 large or 2 small bananas,  dinner could be anything,  quiche, fish, soup, salad and baked potato are in at the moment, small portions, a teaplate would be big enough, I try to have dinner 5 times a week, PS my portions are smaller now as a regular sized  meal can be difficult with my dysphagia, supper is rare, often a little treat though, cheesecake.

Poppy's going nowhere, not yet anyway 

My motivation was a little better until today, but will try to bounce back, 

Sorry Saturday was at the hospital to get your PICC sorted, and you got the B team again, it's so unfair on you, not surprised you get stressed, I imagine your stressed before you get there. Well done you, managing most of your walk, I'm sure having the wheelchair with you gives you a little more confidence to do a little more, Marie, I  can remember 2 years ago when I could only walk 40 meters and the effort it took to push yourself to go further, so appreciate what effort you are having to give, your a star.

I hope your DNs were a pleasure and you enjoyed your soak. One of my treats as well 

Sheila took me to Welbeck Saturday for lunch, Sunday at the seaside was cancelled, too cold so had a cosy day in.

Today was Mandy and my MDT meetings, Mandys scan was as good as hoped and surgery will be on Friday as expected, her surgeon is very hopeful.

My scans gave slightly different results, my  RT and HT, continue to have an impact on  my soft tissue mets, only 1 lymph node shows positive for cancer, but I have 3 markers on my ribs, which there sure, but not certain are cancer, which only show on one of the scans. See oncologist in 3 weeks to confirm and discuss treatment.

Sheila's off to Aus Wednesday, idiot brother off to Portugal Friday, so all on my lonesome, thank God I kept Poppy.

love Eddie xx 

Good morning. Thank you Eddie for sharing your food info. That sounds round about the same for me. On hearing I'm having much the same as you makes me feel "normal" so to speak. I'm going to have to have a chat with PN Helen to find out if I'm eating enough or should I be eating more. I'm not really sure about what's the right thing with it all. The therapy suggestion sounds like a good plan and I will look into it. 

Saw oncologist yesterday. She advised the tumour is growing and it's clear it's impacting on my life. She is giving me another round of that chemo that I had before. I start it not next week but the week after. She advised I would be closely monitored, given steroids to take and given a smaller dose over a longer period. Because of the risk of that lung toxicity thing I got. I'll try it and see how I go. She also discussed my pain relief and ways and means to manage the additional pain I suffer sometimes. She said I'm only on 10mg Zomorph so there's plenty of room to maneuver. She talked about upping it here and there. I'll see how goes it.

Oncologist asked about the PICC line. She said the only reason she referred me back to have it removed was because the nurse advised she had exhausted all other avenues. She hadn't though. They hadn't tried the unblocker fluid they usually try. She referred me back to get it done yesterday afternoon. They stressed me again but it did work. We were at the hospital all day. I was exhausted when I got home and went to bed. 

Thank you for your kind words and motivation re the wheelchair and my motivation levels. I can't believe how far you have come considering the circumstances. Absolutely amazing. I hope your motivation has picked up. Keep on walking beautiful poppy. 

So good to hear mandys scan was good. I hope all goes well for her today. I will be thinking of her and give her a big love from me. I hope when they investigate further with your tests you eventually receive some better news. I have everything crossed for you. 

We travel to the new forest today. Looking forward to the getting away and the break. How are you and what plans have you. Will you be waving your brother off to Portugal today? I'm wondering why he's an idiot lol Take care and enjoy your day X

I've got them, thank you so much Eddie x

Hi Marie,  your always welcome my friend, I must say Marie, my diet is chosen, in part to help Bowel movements, but I try to eat healthily. I think if your weight is stable"ish that's a good sign, have that word with Helen, and if you want to see a therapist, your DN, should be able to help, it's important to eat enough as when you are a little more active, you don't want an energy deficit because you haven't eaten enough 

Oh Marie, I'm so sorry to hear your tumour is growing,  but it's good to hear your burns healing well enough for you to have chemotherapy, is it only one cycle, or  will your monitoring decide if you have more, if results are positive, surely more must be considered you would hope, and I hope the revised steroid plan works better for you too, I'm sure they will be on alert for any lung problems this time.

Zomorph, can be taken in much higher doses, your on a lower than usual one, please be careful with opioids,  let's hope your chemotherapy will help with your pain.

You should have told your oncologist about the poor treatment you received regarding your PICC,  and how Megan never had any problems with your PICC line. I doubt the others know how to use a thrombocy wash. a day in hospital is not fair on you, not surprised you conked out when you got home m.

Would love to say my motivation has picked up, but I would be lying, it came back for 3 days, I am pushing myself but there's little enjoyment, lots of bad news I think. Had some fab news today, hopefully that will be the boost I need. I need to be "fit" enough to help my family 

Good news to finish, Wow Marie,  you got to the New Forest, we'll done, I'm so impressed and happy for you and Dave, I hope, anyone else made the trip, I haven't been their for ages, but it's beautiful and lots of wildlife and pubs, have a wonderful time, my idiot brother , has no idea I have cancer, I haven't told him but don't hide anything from him, I've had, ambulances, Dr's, DN, PC team, physio, and crisis team visit while he's been home, all my meds are in the cabinet, he can see how much I struggle, even when I couldn't get upstairs or get to the local shop 50 yards away, he had no idea "idiot".

Mandy had her operation this morning, just under 3 hours, finished about 10 hours ago and apart from 10 minutes, she's slept all day, we Lesley "her mum" and I, have been allowed to stop all day with her, we've not long left her, we're stopping at a  B&B next to the hospital until Mandys allowed to go home. Surgeon is very happy with how the operation went, he's confident he removed all the cancer with clear margins and if any has been left behind, chemotherapy will take care of it, he and her oncologist are very hopeful Mandys treatment will cure her. Will give her a big hug from you when I'm allowed, she's a bit sore just now,  l hope you got to Hampshire safely, and I would think your all in bed by now, no plans for us, I'm typing this at 11pm, been worrying about the operation for a few days, little sleep and not eaten since Wednesday, Lesley has made some supper, then it's off to bed, unfortunately there's only 1 bed, what a shame for Lesley. take care my friend 

love Eddie xx 

Hi Marie, I am so sorry to read your has grown a bit but hopefully your treatment will sort it out! It isn’t fair you had to spend the day in hospital because you got the ‘numpty team’ Again! I agree with Eddie that you should let your oncologist know the bad treatment you have had from Team B when there is someone else who can do the job efficiently and makes you feel a lot better when she treats you! You know you have every right to refuse to let her touch you, it doesn’t matter who it is. I once told the receptionist making appointments that I didn’t want to see a certain professor again and wanted an appointment with someone else. She was shocked and said she didn’t know IF she could do that because he was in charge of that department. So I then said, in that case I will move to another hospital for treatment! I wrote a letter of complaint to the Hospital Board explaining the problem and they changed me to another hospital! We have to stand up for ourselves!

I must say once again I agree with Eddie about the opioids. I have severe pain and the easy answer is to UP the drugs but then eventually you are on a high dose but still have pain because your body gets used to the higher amount very quickly. Has your oncologist mentioned referring you to the Pain Clinic or Hospice to try to get the pain under control? If not you could maybe suggest it to her/him if you still have problems after the chemo!

I know I don’t post often but I try to keep up to date with what is going on but at the moment I have various things going on here too, sorry!

Good morning. Thank you for your well wishes re the tumour growing. Unfortunately it always seems to have been growing although for sure something or other unknown did slow it shrink it. It wasn't long before it started again. As far as I know they are doing one cycle at present. There wasn't any discussion yet around after that yet. Although she did mention the other chemo I haven't yet had that she would try. The one she said wouldn't work anyway lol She definitely said she will be on alert re the lungs and I certainly will be too. 

I did tell oncologist re the PICC line. She was cross as she said the idiot nurse who emailed her said she had exhausted all avenues to which oncologist advised the PICC line would need to come out. She lied they hadn't. They're so annoying sometimes in not knowing their job. And what's frustrating is your sat watching and know it's going to happen lol 

That's absolutely awesome news re Mandy. Please give her a big love from me. Under the circumstances what a truly amazing job she is doing. What a truly amazing job you are all doing. My love to you all. There is no wonder your motivation and energy levels are low. Don't you be hard on your self. If you think about it you're actually doing a lot taking care of Mandy and everything. More time and energy will come. Rest and take it easy. 

That is strange re your brother. Does he know now? Did he always know you think and just have difficulty in talking about it? 

Just to let you know I'm having the most wonderful time in the new forest. I absolutely love it. Love the wildlife and the wild horses alongside the road. It's ace. I am on steroids this week. I have gone from eating little to eating everything lol I can't tell you how much it means to me to be able to sit and enjoy a Sunday roast. I also have more energy and motivation, feel generally well in every respect and pain has subsided. I'm really enjoying this moment. 

Anyway enough of me. How are you and what news have you? Take care and enjoy your day x

Hi Annette hope you are as well as can be under the circumstances. Thank you for your well wishes and getting back to me, means a lot. 

Well done you refusing the top dog. Love it! This is our life we're talking about and we should defend it as best we can while we can.

I absolutely agree with you re the morphine. I have had this conversation about climatising to it with the PN, who sorts it for me, the DN AND the oncologist. They all say this is not the case and will not happen. And there's other things that can be done. I've not pushed it as I've taken them at their word. Maybe it will come to that huh. 

Can I ask please what you're taking? Thank you. 

Take care and enjoy your day x