Ding, ding! Round 2

Hi Daloni

So glad to hear you are feeling better, long may it continue. Good luck with your new trial.

Best wishes Elliekate xx

Dear@daloni, good luck with everything today, it’s sounds as though it’s a very full day, so make sure your stocked up with some snacks to keep your energy levels up. It’s good to hear your eating well again, that’s always a good sign. I really hope you get some positive results even if it’s that you go back to being a stable Mabel. I so admire your strength of spirit, I’m sure your daughter is major source of comfort to you.

I am so pleased, I had been wanting to ask you but I hadn’t wanted to intrude, as I knew you would tell us how you were getting on when you were ready.

Im guessing it’s not so much the trial drug that has done this as the other things: however it sounds like the trial drug isn’t making you feel poorly either and that is a start! Hope today goes well and you get home soon xxx

Hi Daloni

Really glad that you are feeling better and cooking etc. It's great that you can get out and about with Noodle, being outside is such a tonic. Hope everything goes smoothly, take care

Xx

Hi Daloni

So glad to hear that you are doing well and that you feel you have your life back. Getting on top of the pain must be such a relief for you, what's the secret? Lol. You know you're feeling a lot better when the ready meals get left in the freezer and you can start to cook good healthy, tasty food again that taste so much better.

Little Noodle must be on cloud nine too, that you are able for 2 walks in a day. I feel so sorry for Conan when he gets the idea in his head that he wants me to go out with him and it's dark and wet and just too downright dangerous to set off on my scooter on an unlit country road with no footpath. No amount of teeth around my sleeve, tugging relentlessly will change my mind Conan son, you'll just have to wait until the morning or afternoon if I spend the morning catching up on sleep. I actually started this at 2.30 this morning because that's when the pain woke me. I've an appointment this morning at 11.00 am with the GP. 

I thought you were not good when we didn't hear from you for a while. Keep improving Daloni

Tvman xx

Dearest daloni

how lovely to hear you are feeling well enough to cook ,and walk noodles

it is something the general public take for granted ,but the community on here know just how great this feels

long may it continue

hoping the trial continues well

positive thoughts

janet

xxxxxxxxxxx

Hi,

so glad you are feeling better.

i felt ill for a week and could hardly move I know what you mean by the fatigue.

it turned out the diuretic they put me on indapamide lowered my sodium level and when I stopped taking it my head cleared and I felt much better .for a week I didn’t know what I was doing.

i am now taking spironolactone and that seems to work. I am taking a lot of tablets to keep my blood pressure down so I can take the lenvatinib which I seem to be able to cope ok with.

only problem I only have 3 days left and the consultant forgot to re order it and now another has but I may not get it in time . Not sure if it has to come from Japan the company Eisai are funding it and they have to request it on a special form.

has anyone else had this problem ?

love Ruth 

Thank you for all the good wishes, my friends.

I’m at the trials unit now, sitting alone on a hard chair in an uncomfortable side room rather than in a recliner in the ten-bay treatment area able to chat to the nurses and watch the goings on. That’s because I had a cold after Christmas and they need two clear swabs before I’m allowed to be in mixed company. Hey ho. The ECG has been done, blood pressure (sitting and standing) and that’s a very creditable 108/60, temperature is normal.

Now to wait for the doctor and the blood test results, get the next batch of tablets dispensed from the pharmacy and over to the main hospital for the echocardiogram. I’ll be joined there by a medical student who’s shadowing me through my treatment. It’s part of her course. She’s very charming and bright and sits and listens attentively as I talk about what medical treatment feels like from the patient perspective and what it’s like living with incurable cancer. I am not sure how much she gets it but maybe I can get into her head some of how it feels - and some of what makes a good doctor from a patient point of view. And she’s a captive audience (brings to mind the old joke about the narcissist. “That’s enough of me talking about me. Why don’t you talk about me instead”) 

tvman you are so right about pain. I’m so sorry you’ve not been able to get on top of yours. It’s exhausting. Poor old Conan too. Noodle is so much happier for two, albeit short, walks a day. She’s finally learning which of the things in the house are her toys and has taken to choosing one and bounding up to me with it in her mouth when she wants to play. She can’t play tug at the moment as she has lost her milk teeth, poor puppy. 

Stable Mable will do me! My tumour load is actually quite small, although widespread, so very little of it causes symptoms. The only tumour that’s problematic is the one in my IVC/renal blood supply. 

you are spot on. It’s most unlikely that the trial drug has had any marked effect yet. There’s a woman in the trials unit who’s been on this drug for two years. She first stabilised and is only now seeing her tumours shrink. I’m so thankful not to have had serious side effects so far. I expect the nausea and fatigue to build gradually but I’m off to a good start. 

that’s so true! There are so many things I took for granted when I had the luxury of good health. 

ruthjp I’m so glad to hear you’ve sorted out the medicines and found something that works. Perhaps your docs should get Amazon on the case for delivering your tablets? They seem to be so quick at delivering everything else :-) 

I hope everyone is having as good a day as they can 

my love to you all 

xxx

Hi Daloni, so glad you are feeling better and have managed to get on top of the pain, it makes for a miserable time when you cant get relief from it. Hoping part two of the trial is good to you and you carry on regaining some strength. Good to hear your cooking again too, nothing like a good home cooked meal. All the best, Lynn 2.xx

Great to hear you have perked up Daloni. Long may it improve. 

Good luck with the trial too. 

Glad to see you are sharing your experience with the student. It's so important that the medic has some understanding of patients viewpoint.

All the best

Fish