Pessimistic and no faith!

Hi Puddock, you are always welcome my friend, it would be lovely if you popped in more, Marie and I are always happy to have people join us.

Lesley and I are at our son and DIL, the little ones are so beautiful, I'm so lucky, and though I know my time is short, having little Lesley and Pauline in my life will make that time so much richer and help with the dark times, sorry Puddock, I'm being maudlin, how are things in D&G, I hope your getting out with Candy, and your befriending is bringing you everything you hoped it would.

It's forecast nice next week, mild and sunny and with only 3 appointments, Lesley wants to get away for a few days, just us two, l hope  I'm wrong but  I've had a feeling something is bothering Lesley, and she's wanted to tell me for some time, I don't know if I said, but 3 years ago Lesley lost her mum and big sister to cancer, ovarian cancer, sadly it's very common in her side of the family, and difficult to catch early, I hope I'm wrong, but I've known Lesley since the day I was born, and we know each other as well as we know ourselves, and  I know it's not good news she wants to talk about.

love Eddie xx 

If your oncologist feels the chemotherapy is having some impact on the cancer then it is worth continuing. Sometimes chemotherapy has no effect at all, so it's just wasting time which we don't have. It might be worth checking online to see if there is any medical research about the kind of chemotherapy that you are having and how many doses it takes before it has an effect. So for example, I am having a kind of chemotherapy called trabectadin. so far I have had 8 doses, three weeks apart. The oncologist was wanting to drop it but I read an article that said that trabectadin works best after 7-10 doses. I asked the oncologist if we could stick with it and she agreed. To be honest in my case there aren't a lot of options, this is the last line treatment, but my feeling is that they are too quick to ditch a line of treatment sometimes. I also understand how your previous treatment could undermine your confidence. My early experiences of "the cancer journey" were not good. Delayed treatment, sloppy discharge from hospital, (some, ok not all) staff who didn't seem to care. It's got better. But my early 'treatment' LOL set me back months. You just have to stick with it and if you aren't happy, speak up.       

Hi Ramsbottom, and a big welcome to our little thread, its always nice to have someone else's experiences and points of view, and I was very interested in what you said about chemotherapy and that sometimes you have to be patient with it, to get the best out of it,

I understand your post was for Marie, but Marie and I share a history of poor care and treatment on our cancer journeys, and I am sorry to hear about yours, most of which, sadly I share, and then some. I really do hope your trabectadin treatment is  successful for you, as much as it can be, and with options to follow, best wishes.

Eddie 

Yeah my post was for anyone really but good luck with it anyway. Makes me retch when people get all gooey about hospital treatment - some of it has been, frankly, cruel. 

Sadly my friend I understand, 

Eddie

Good morning.

I don't know if the Zomorph helps with the sleeping or not. It does help with the pain now they've upped the dose but the tumour is very tight and uncomfortable still sometimes. I feel like popping it with a pin to release the pressure. If only!! 

As to the steroids saga. You may remember in November we went away and I was feeling rubbish. Oncologist prescribed me steroids, 2 x 2mg, to pick me up for the holiday. And pick me up they did, felt so much better in every way. On returning I asked if I could remain on them for the duration. The oncologist was on holiday so the registrar prescribed 1x 2mg a day. When I saw the oncologist a month ago she dropped it to 1mg a day on the basis of she wanted to see if I managed. At my appointment last week they stopped it altogether on the basis it was simply acting as a placebo even though I advised them there had been some deterioration. Stupid thing is I take 8 today, tomorrow and the day after. Whilst I'm having chemo. Hmmmm!!

Yes they did get enough blood. They took it from my other arm. Heaven knows what they will do tomorrow. I shall update you no doubt. Fun and games huh. All I know is looking like another long day. 

Scilly will be fabulous. You will have the most amazing time even though the arrangements will be a chore. It will be so worth it.

I can't wait to hear your news re the twins. Aw I bet they're utterly gorgeous. I imagine they bought you so much love and joy. I hope you had the most wonderful time. 

Oh absolutely ignore the hospital letters. Nothing that can't wait. There are far more important things on the agenda. Well we were going out today but the weather is worse. It really has frozen some more. So I'm going for a soak and pamper day. Face mask the works. And as to Sunday dinner, Amy will no doubt put something together. 

How are you today and what news have you X

Hi Kate I hope you are well as can be under the circumstances. I absolutely love you butting in, your advice is most appreciated and thank you. 

I have commented about the steroids in my reply to Eddie so I'll not repeat myself. Should I go further down hill and determine it may be the steroids, which is difficult to determine I know, I shall holla.

Take care and enjoy your day X

Hi Ramsbottom, welcome and lovely to meet you. 

I will do some further research online. I have done some but not enough. I'm with you I feel I need to arm myself should I feel a need to defend. Like you I have little options too. I have had 2 different chemos but got told beforehand they wasn't likely to work. In fact at my very first appointment with my oncologist she advised me to consider no treatment as nothing was likely to work. However the tumour did shrink, they're not sure if it was the chemo or the radiotherapy. I'm having another round of chemo, gemcitabine, to rule it in or out. I can't have any more radiotherapy, the tumour is too big and it made me so ill last time they had to stop treatment. 

Good luck with your treatment I really hope you get some good news.

Hi Marie, we have friends, it's good that the Zomorph is helping with your pain, and hopefully for your sleeping soon, but be aware it can have the opposite effect, if only Marie, pop the bas#ard like a balloon.

I do remember,  your trip to the new forest, and your concerns and the wonderful results from your steroids. I believe you, you felt better on them, are the one's you take around chemo, the same, or similar, as the daily ones were, you really should explain this to the doctor, Mandy or PN, if they "think", it's not enough to have an effect, then surely it's not going to hurt to take them.

 Good luck tomorrow Marie, I will have everything crossed the numpties aren't there, and you get treated well by someone who knows what their doing, did you think about a port-a-cath?.

I'm not surprised you never went out today, it was bitter last night and not much better today, Roll on the better weather next week, and sunshine. Have a wonderful time being pampered and having a relaxing soak, sounds so nice, and with a lovely meal made by Amy to follow, perfect.

We've been celebrating Christmas again, with our youngests family,  the little ones are gorgeous, and I do have some photos I can share, and Lesley and I have run out of tissues, lol, no Christmas dinner, but a fab curry and homemade crumble, but sadly we both have to get off soon, booo.

I took the letters with me, just in case, just routine appointments, apart from one, a hospital car park fine, Bs.

Anyway, another couple of hours of cuddles and tears "happy tears", then home.

love Eddie xx 

I also have been refused any further radiotherapy. It didn't make me ill and I would be happy to have it but the oncology team won't allow it. I wonder if it to do with cost? Gemcetabine didn't work for me, so it got pulled.