Thought I’d start a new thread so it didn’t get lost
absolutely manic in clinic today. 65 patients, 4 doctors and 3 chemo nurses so arrived at 1130am and no surprises here ther were no beds or recliners for me. eventually, got a recliber about 430pm anf=d left at 8pm so by time had etaena nd spent some time with children and talking with hubby and updated my blog, I’m now updating here. Did mean to do it earlier but time just went.
When I arrived there were no empty chairs and actually the wheelchair was better as had high back so stayed there and cried as the thought of sitting on those hard chairs for at least 4 hours was too much as my bum was sore already where I’d fallen asleep upright last night without my pressure cushion so could feel pressure sores coming on again.
The consultant saw my distress and I saw him immediately. He was not happy that my swallowing had deterioriated so much in 4 weeks off taxol and that my lump had regrown but was happy to give me 4 more taxol or if it seems to be working and i am well then can have some more. He feels the taxol won’t work and that I should just accept the fact I’m dying. Saying that when I discussed having vineralbine again he said he could see no reason why I couldn’t have it - mixed messages again.
We discussed whether i had accepted the fact i was dying and what was my plan? Was it to contiinue having chemo right upto the point where I’m too ill to continue or when to stop and say that’s it, I want to die now. Can’t answer that as it depends on how I;m feeling at the time.
He is off on a 3 month secondment and said he didn’t expect to see me around when he returns so that was very cheerful!!
My echo showed my heart function is at 60% so good for me so water tablets are doing their job and he showed me my spine xray and you can clearly see where T5 has now collapsed hence the pain and clicking i can hear.
He felt that the comment written on the GPs computer was a comment by a haemotologist who felt i had bone marrow infiltartion but as iron level now 116 and other blood tests are OK, not to worry as they weren’t concerned - suppose some medical secretary entered it from a letter.
Can cut down the dex to 1mg and go back next week for taxol number 16.
Found out yesterday from manager that I will not be paid after next friday so have had to see benefits people this morning to start claiming benefits etc and to bank about mortgage. Lots of phone calls to make in morning now so better go to sleep
No time to look through psts now.
Thinking of you all
Kate
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'Tired’s not a word used in my vocabulary. Bodily fatigue is nothing to the cause I belong to.
Hi Kate
glad you got the taxol and other options to try - which you wanted although it sounds like your consultant shoud sue the charm school he went to - surely its not as simple as treatments or accepting dying as everyone is different and needs to stike their own balence of what feels right and manageable to them -
anyway its awful you had to wait so long and the day is made longer and more painful for you
hope you get a good sleep - hope you are sleeping now , take care …jayne
finally found your blog!! Thank you.Anyway, reading this post I was appalled at how long your day was. But I also got a strong feeling that you will surprise your consultant again. You will be there when he comes back. We are all dying Kate, that’s a fact I think we have all accepted. But from what I have seen here, none are ready to just give up and die. Everybody wants to keep on fighting, no matter how bad we feel at times. My oncologist didn’t think I would still be around for my next appointment. I’m due to see her next Monday and here I am feeling great! You have beaten the odds so many times, you will do so this time too. If you feel better having the Taxol then it is doing something. No matter what your consultant says. And if he was so convinced it doesn’t work, why did he agree to let you have more? Or agree to you having Vineralbine again if you want? Like my Dad says, they have to give you the worst case scenario, but I sure wish they would also give you the best case scenario. I always come back from oncologist depressed because what she tells me doesn’t tally with how I feel! I should be half dead by now according to her and yet it’s ages since I have felt this good! Anyway, I have been anxious about you from time to time, feeling that things were not well, but not this time! You are an inspiration to so many on this site, I can’t imagine you saying ok, that’s it, stop the treatment!
What a day you had, I know the Oncs have to tell you things but there are definately ways to tell somebody, I do wonder as Jayne said which charm school did he go too. You are such a fighter and he must know that you have bounced back. I’m so sorry I am so mad I could go and punch him for you, I often wonder what would these Regs and Oncs be like if it was happening to them or someone close. I’m glad he has allowed you to have more Taxol.
I’m going through some things at the moment and have wondered is it all worth it but I think of you and you are just so inspirational, thank you for being so strong.
Kate
I am glad that you got what you needed out of this which was to continue on taxol. Particularly pleased you seemed to have got a sensible answer on the bone marrow infiltration.
reallly I am amazed at the lack of empathy and understanding from your onc, why do we have to have a plan? I dont have a plan eg . ‘i will continue on chem o to x date and then I will stop’ why would i have a plan !! I get this in other aspects of my life - people who haven’t had something terrible happen to them think you should have some sort of careful plan of action which will neatly wind things up for everyone…we all know what our prognosis is, we know the stats, and the doctors should not confuse a determination to keep living if possible with denial.
Hi Kate, I am so glad you got what you felt was right for you. I guess it must be hard for them to understand how each of us feel about the continuation of treatments, but if it is doing any good and that person wants to keep on, they should, so glad they listened to you and are also considering next possibilities.
Blog? What blog? You gotta blog - where is it? Anyway - another dreadful day got through. Not sure why you are sorting out benefits and mortgage - is there no-one else who can sort this out. My nurse sorted out the benefits for me. You should be doing restful, or wonderful things or altenatively mowing down dreadful people in your scooter! It certainly is a postcode lottery as to how we are treated when we are waiting for treatment and how cancer treatment is resourced. I am glad I do not live in your area.
What a day you had Kate!! Too much for a well person never mind with all your problems. You shouldn’t have to wait for so long at the hospital. It doesn’t seem right.
Am glad you’re continuing with Taxol as that’s what you wanted and you noticed your improvement on it so I hope it helps again.
Your consultant’s seeming lack of empathy and sensitivity is appalling! How on earth are you supposed to know your plan? You’ve already come back from the brink so many times it seems.
I guess it’s up to us to be honest with the consultants as to how these comments affect us or they’ll never learn but very hard to do when one is already so weakened by it all.
Your positive attitude and strength continue to shine through your words. Just keep going Kate. Hope you manage to have a good weekend.
Kate - It sounds like good news all in all - but your onc does sound like he should have a course in how to talk to people and your hspital sounds a nightmare!
I follow your posts but don’t always reply to them. i am pleased for you that you can continue with taxol and its good to hear he expects to c u in 3 months time.
Hi Kate,
Sorry you had yet another terrible day - hope you’ve had a restful weekend to get over it. But I am so pleased you got the chance for more Taxol (my fave chemo drug at the moment!)
In a way I’m glad he said he didn’t expect to see you in 3 months - knowing you, you will b**** well make sure you’re there waiting to show him, when he turns up for his first clinic!!! Go on - prove him wrong!
Sending lots of love
Jacquie xxx