Busy couple of weeks coming up

Hi Daloni,

i am sending you warm thoughts. It is horrible to hear bad news but where there is treatment there is hope.

i am starting this drug lenvatinib which in a way I am dreading but what other option do I have and it gives me hope.

Good luck with the drug and the higher dose 

xxx

What a long day and some hard things to hear along the way, my heart goes out to you, no matter the brave face you will have had on all day.

i hope they can deal with the kidney issues as this seems to be the most urgent thing to sort, and then see what happens with the trial.  Hopefully you are home and comfy and the puppy is keeping you entertained before the next appointment.

i don’t have much helpful to say but wanted you to know I am thinking of you and sending you a very gentle virtual hug, Heather xxxx

Hi ruthjp

Good luck with the lenvatinib. I know nothing about it. I hope it works and has minimal side effects. 

I am still in hospital right now, . it’s a safety thing since it’s such a new drug and I need copious blood tests at set intervals because it’s a trial. I did in fact have a reaction to the infusion and had an asthma attack. That got everyone very excited but after a couple of puffs on my inhaler, a bit of oxygen and some IV piriton I was fine. 

 I finally got a bed in a ward some time after 10pm last night - the treatment is at the trials unit on Tottenham Court Road and the hospital is round the corner on Euston Road. It’s literally five minutes walk but I had to go by ambulance with a nurse! The transport request went missing along the way somehow. Ho hum. I’m waiting for discharge from the ward at which point I’ll trundle back to the trials unit, stopping for lunch on the way, finish the last blood tests and home. Hurrah! 

Next I need to think about talking to my important people about the scan results. That’s mostly my family. It’s my niece’s wedding the weekend after this one coming. I’m not going to mention it before then - it wouldn’t be fair. It’s her big day and I don’t want to make her sad. 

Xx

Hi Daloni

i hope you get home today as you are expecting. It sounds as though you’ve been very brave dealing with everything. Fingers crossed for you. 

That little puppy is going to be great for a cuddle later on. 

Take care 

Polly

That's a very tough couple of days Daloni, so much information to take in, I'm sure it'll take some time to process all of that.

Those scan results sound very complex and scary, and I'd love to be close enough to give you a big (gentle) hug.

I hope the trial will prove to be beneficial for you, as well as those that follow, and give you as much time as possible with your daughters.

The best thing about a puppy in the house is that they can always make you laugh. I hope you'll soon be at home for some puppy/youngest daughter therapy and get some much needed rest. Lots of love xx

Oh crap-a-rooney Daloni! That certainly wasnt the day u were expecting. I hope by the time u c this u will b cosied up in ur own home.

Dare I ask how frequent the trials r?

I'm at the "I feel s***" stage. As they say in Scotland feeling wabbit- tired & washed out. Feeling nauseous despite Ondanseteon, steroids & Levomepromazine, struggled through a day's work 2day - don't think I was the cheeriest person 2day.

On a happier note daughter is coming home from Uni 4 a long weekend. Although she might also b a tad grumpy as her train was delayed...oh life.

And if I feel a bit less green I will b joining colleagues 4 a Thai meal (although at the moment the v thought makes me feel puky - the food not my colleagues lol).

Take care D

WB xx

Hi Daloni

It is said that women are the weaker sex. They clearly never met you. Most of us haven't met a lady like you. You are as tough as nails, not a shadow of a doubt. 

A result that you didn't expect, frightening. I hope to goodness that this drug does wonders for you. I hope you don't get this until morning but knowing you, you'll get it before then. 

I only got about an hour before the pain woke me. That probably means I'll be woken another 2 times but that's the way it is.

And a message for you WB, if it were me I'd wait until after Christmas like others have suggested. Hope your girl's home now and you can have some fun time together. 

Take care everyone

Tvman xx

Hi daloni

hoping this finds you at home with a cuddly puppy and daughter 

you have so much to deal with ,being so brave and stoic , 

I can’t really find the right words ,but my thoughts are with you 

positive thoughts,delicious chocs  from hotel chocolat ( saw you like these ) 

janet

xx

Hi folks

thanks again for all your kind words, especially from those of you with pain and sickness. They buoy me up.

I did get home in time for supper on Thursday and spent today gazing lovingly at the puppy, Noodle. She is so sweet and so clever. We did a cycle of play, cuddle on my lap to sleep, pop her in her crate, climb out of crate and curl up at my feet, wake, toilet, eat, play. Not a single accident today. A friend came for coffee and brought flowers. My niece and her wife came for dinner, a delicious veggie chilli cooked by my wonderful neighbour. It’s been really restful and full of love.

By the time I left the trials unit yesterday, we had a plan. It’s daunting and goes like this:

Monday: trials unit at UCLH for bloods

Tuesday and overnight to Wednesday: UCLH for treatment

Thursday: Maidstone Hospital for pre operative assessment

Friday to Sunday: up to Shropshire for my niece’s wedding. Yay!

Monday: Maidstone Hospital for stent removal (day case but involving a GA)

Tuesday: UCLH for bloods

Wednesday: UCLH for treatment, no need to stay.

Gulp! If the surgery helps the pain and the immunotherapy halts the cancer, it will be worth it.

Various friends and family are stepping in with support of all kinds. My daughter has a two week half term holiday so she’ll be on Noodle duty and her friends will be delighted to visit. The puppy does cause some logistical headaches but in all honesty I’m so glad we have her. I think she’ll keep my daughter going. To think that this time last year we were off on our holiday to Iceland! I’m so glad we did it.

Anyone want to open a book on the likelihood of this plan running hitch free?

My love and best wishes to you all

Noodle! Isn’t she beautiful?