Out of limbo

Dear ,

It is good to hear that you are our of limbo!  Finally !

With Chemo its always a decision of risk /benefit and living longer is good. Do you have the same consultant?

will be thinking of you on the 1st.

xx Millie

Hi,

It is good for you to be moving forward with hope.

ihave had to reduce the dose of lenvatinib due to my BP.

i have a CT scan and a MRI on June 25th to see if the lenvatinib has kept things stable. My oncologist speaks to me on the phone. I understand for a consent you have to sign a form you would think they would find a way on line 

I have rewritten my will and they hand delivered it .i got my next door neighbours to witness my signature on their doorstep.

good luck to you

love 

Hi Daloni 

• As already mentioned I am glad to read you are out of limbo. It s not what you wanted but halts the cancer, gives you that living space and we get to spend time with you , great person that you are. Even though it is feeling good but scary you know that there is level and support form all of us . Xxxxx

Thanks for the encouragement. I need it. I hate having chemo - this will be the fourth time. 

Yes it’s my same consultant, Millie . She moved from UCLH to Guy’s Hospital in May and is taking me with her. Both are teaching hospitals in central London and both have state of the art dedicated cancer centres. Guys is in the shadow of The Shard, the sky scraper that now dominates London’s sky line. She has amazing vision for what she wants for her gynae cancer patients and she hopes Guys will let her deliver it. She is totally awesome and I am more than a little in love with her. 

xx

Hi Daloni, At last the wheels are in motion for you! Even slow motion is better than none. I think it's amazing you can go with your consultant to Guys as its obvious you trust her and she only wants the best for you! What a good combination! It must be daunting having your fourth chemo. Although I have never had chemo, as it won't work with my cancer, I have had quite a lot of surgery, as you know, and it's when I'm are going through the process of signing papers and having that pre op assessment I think to myself "aargh! Why are you doing this again!" Then I think of my family and the extra time I will have with them and it all makes sense! I hope this is the same for you and when your chemo is started, it's with a positive mind! We all know you can do this and will be here for you all the way!

ruthjp Hi Ruth, Good for you rewriting your will! It's one of these things we don't like doing but once it's done you feel a sense of relief! That and Power of Attorney for health and finance were the first things I did after diagnosis. Oh actually when I think of it, the first thing I did was have our couch and recliner chairs recovered as I've always wanted to do it but knew after I was gone, my husband wouldn't even think of it! Strange the things that go through your mind! 

I hope when you get your scans next month, they show great improvement!

Hi ruthjp

Good luck with the scan, I hope it shows everything is stable. You’re still quite a long way off so I really hope you can manage the intervening period without thinking about it too much. I tried to put the things out of my mind as much as possible and just didn’t get on with enjoying myself.

It sounds a right palaver getting your new well signed. I’ve been thinking I must make sure mine is all correct. I’ve written in some clauses to avoid one of my daughters forcing the other to sell a property at a time when the other needs money invested. I need to make sure I haven’t tied them in knots.

xx

Desr ,

Im so glad she took  you with her- she sounds amazing!

Seems the two of you two are a good combo slso. Both amazonizn warriors. 

I‘m like you,  movement is better than limbo . 
Im hoping your consultant will pull another magic  bunny out of the hat for your treatment.

xxMillie

Hi Millie 

if anyone can, she can 

xx

Hi Ruth / ruthjp,

I hope that your scans go well although as others have said it is quite a long time to wait.  I rarely hear about my scan dates until a couple of weeks beforehand.

I know that it will sound stupid bearing in mind how long we have been talking to each other but I have only just realised that Levatinib is a tyrosine kinase inhibitor similar to the Pazopanib I am on or if I did know I had forgotten.  Increased BP is one of the more common side effects on pazopanib and is usually managed for me by prescribing various BP medications rather than reducing the dose of my cancer meds.  I know that reduced doses can still be effective but have they not discussed the possibility of other BP meds as an alternative?  I am still on the maximum permitted dose of pazopanib but am on three medications as well to manage my blood pressure.

I am due my next scan on the 28th of this month and after not leaving the house for so long I plan to drive to the hospital very slowly with the windows down enjoying the views and the fresh air (I have to drive across the Yorkshire Wolds to get there) and may even take a flask and sandwiches and stop in a lay by for a break on the way back.  I shall relish the opportunity to get out and see a different view even if only for a few hours.

All the best,

Gragon x