Had A Good Day Until.......

Hi Vicki,

Sorry to hear your feeling down. I suppose Jay has had a diagnosis and he’s kind of sticking to the theory they gave him but you and I both know that no one really knows everything. 

On another note I went to my oncology meeting today and it was behind by 2 hours. Anyway he said on the bright side a bit of good news there has been very little growth in the tumours about 1mm. As for the sacrum/pelvis there have been changes to the bone but he can’t really say if the radiotherapy has worked!!

1. I will get another scan in 3 months but at present no plans for any treatment but I will need some in the future. He said it’s stable at the moment but when it starts growing it will grow very fast then I will be put on a combination of drugs and probably a pump. 
   
   
2. I asked him how many MDT meetings they have had on me and he said one. I requested a copy of the minutes of that meeting and advised him I expected there to have been more and I was a bit surprised there had only been one. 
   
   
3. He said he will arrange another one. I also asked how many nodules on my lungs there were and I referred him to my last appointment where I told  him I wanted to have the number for this meeting which he doesn’t and I told him that disappointed me and could he take a note in his diary to have the info for my next visit. 
   
   
4. I also asked him did ge have the biopsy report regarding the RASS test and he said no I would need another biopsy as there was not enough taken to do the test. I asked him to also arrange this and e mail me all the details Monday. 
   
   I have confidence he knows his stuff however, he’s not over the detail which I’m sure he’s got the message now for me he will need to be as it’s the only way I will accept him as my oncologist. I think he gets the picture. 
   
   
5. He was also speaking to me as he was looking at his computer with his back to me and I promptly requested him to turn round when he was speaking to me because he had his back to me lol.  
   
   
6. Clearly I’m very pleased  I don’t need chemo over Christmas. 
   
   Merry Christmas everyone when it comes and make the most of it
7. xx

Enjoy your chemo free Christmas so glad you are pleased.

Ali x

Hi,

Im pleased it’s not gown. Clearly it will sometime in the future however, I will deal with that when it happens. 

One day at a time. 

Thanks Cath! 

It must be a `trait` with oncologists because ours seems to do that too he speaks to you while looking at his computer. Well not all the time he does actually turn round and wheels his chair over to you to speak to you but it's his `manner` sometimes that gets me as if he is `oh so superior` and his word is `gospel` and it's like `oh by the way, you're kidney and liver functions and blood levels are back to normal.  But yeah, as you say no one knows how long they'll be here and God forbitd you could cross the road and get run over and Jay is looking at January as `the countdown` to when they told him, and he takes this literally. I've told him to stop speaking like he does and that it scares me when he does. I just wish he didn't ask like most people do and just don't want to know. So, he's got his pump in and the nurse comes out on Sunday to disconnect it that's the 48hr period of wearing it up and then on Wednesday a nurse comes out and flushes his line through and then every Wednesday after that and on every 2nd Wednesday he gets bloods done they can do that through the PICC line and he gets a phone consultation with the clinic on the 29th and then back to get his next infusion and pump fitted again the following day. I'm trying to be optimistic and hopefully this round will work or have some positive impact. Good for you in making `your presence felt` at your oncology meeting.

Vicky xx

On the upside as I said earlier, he is a lot more `upbeat` tonight and enjoyed his dinner (chinese takeaway) first time in weeks he's said he is hungry. Could be back to square one tomorrow though but just need to take the good with the bad just now. Take Care

Vicky x

Hi Vicki,

lol anyone who’s ever met me always remembers me. I seem to leave a lasting impression wherever I go. It’s usually a good one tho. Once seen never forgotten. 

My husband said to me I think your oncologist has respect for you, I just like anyone who’s looking after me to be over the detail as it’s paramount for me. 

Jay should try and live one day at a time and enjoy every nano second that’s all we can do. That’s what I’ve always done in my life and have no intention of changing my approach although it will be a bigger challenge in the future months that lie ahead, 

Xx

One day at a time xx