A Day of Ups & Downs

Boo hiss WB! That’s not the welcome you wanted cir your daughter I am sure. 

I hope you get out soon 

love and hugs xxx

Boo hiss indeed. Along with hourly obs means I'm not getting much/any sleep - won't b a bonnie sight 2morrow with enormous bags under my eyes. 

Hows the holiday gone? Hope ur health has held :)

Thanks fellow night owl

WB xx

With hourly obs I shan’t fear waking you. 

The holiday was truly wonderful and my health just about held up. It was miraculous as right up until the day before leaving I wasn’t sure I would make it. My family made contingency plans in case I wasn’t well enough.

But on the day, I got on the plane with a suitcase full of tablets and by day two I felt I’d turned a corner from “unwell” to “recovery”.  By day three I felt “actually not half bad at all”. My family looked after me so well. I didn’t have to do any shopping or cooking and they kind of held me up so I felt safe to give all the brilliant activities a go. For example, when we went kayaking and canoeing, they made sure we got a three man canoe and put me at the back in charge of steering. Nobody charged ahead when my walking slowed to a snail’s pace and when I didn’t feel up to going out with the big group (there were ten of us), someone always insisted that they needed a rest too and stayed with me. 

We had an absolute ball. The highlights were rafting down a crystal clear river; taking a zipwire trail that had seven wires totalling 4km back and forth across a valley with views of wooded hillsides with the mountains beyond and a castle; riding an electric bike along a river valley; and swimming in the rivers and lake. We had wonderful weather too, with temperatures in the 20s and plenty of sunshine. Slovenia really is great. 

I have come home with horrible swollen legs and belly, mind you. I put on 5kg in a week and it’s not all ice cream and Wiener schnitzel. I look like I’ve got a big sack of water on my tummy, my legs are like tree trunks and my toes look like little Christmas cocktail sausages. It’s pretty uncomfortable. I’m going to the trials unit for scan results and a check up today. I’m hoping for the best (stable Mable, stay on the trial tablets) but prepared to hear that there’s disease progression. The swollen tummy doesn’t bode well. 

Ttfn. I hope you get some sleep 

xx

Good old hospital food trolley round at the crack of dawn!

Sounds like u had an absolute ball on the holibobs. B4 C I used 2 b an action Jackson on hols. We've bn kayaking in a lagoon (& fell out when ours developed  leak), horse riding & cycling- all in the wonderful Caribbean. Rides at Disney. And loads of walking & exploring on every other holiday we've ever bn on. Not quite the same now although I have had my annual cruises.

Temp is down so lets see how the bloods r doing. Off 4 some delicious hospital cornflakes. 

Hope u get sorted 2day.

WB xx

Hi Daloni,

i enjoyed reading about your holiday. It sounded lovely brought back memories of when I went to the then Yugoslavia.

Your family sound  brilliant and so supportive.

sorry you are coming back to more health problems but so good you could have a holiday it makes such a difference.

we go to Brussels on September 11th for 5 days. Good to have breaks to look forward to.

i am still quietly grieving the death of my mother in June and sorting out the probate and selling her house. Last week my sisters husband died of lung cancer they live in Florida so we won’t go to the funeral. It will be hard for her but she has her 2 daughters with her.

I am waiting to see If I can get the drug lenvatinib the NHS has turned me down but I can apply to the company direct. Or rather my oncologist can. Another wait and see.

also waiting to hear about a brain scan as my double vision cannot be accounted for.

love Ruth x

Just a quick post as I am off up to the hospital for a biopsy.....

daloni, I hope the scan goes ok, and it’s not Ascites, just some random bloating x

hello Ruth & wee blonde, it sounds like you have some troubles at the moment but hope they clear & we can get to the weekend in a better place

heather xxxx

Hi ruthjp

I am so sorry to hear about your brother in law. How sad not to be able to go to the funeral but I can quite see it would be impossible. 

Your description of quietly grieving for your mother is very touching. I remember having to clear my mother’s house. It’s not easy, I know. I did it with my sisters and recall both happy and sad moments as we remembered days past. 

I do hope your waiting ends soon. 

Lots of love 

xxx

Well folks. That was a mixed day. 

The CT scan showed the liver tumours (the ones they were monitoring for the trial) have grown so I’m off the trial drug. Boo! 

On the upside, there’s no new tumours and I have less cancer in my body now than in January when I started  this trial. So hurray! 

I knew something like this was up when I arrived. The nurses were being all weird. Then the specialist registrar (not one I’d met before) came along and instead of drawing the curtains round my chair as usual, she took me off into a side room. Uh oh, I thought. The nurses were all very sweet afterwards and wanted to hold my hand and hug me. I was just trying to keep my shit together and so although their being so solicitous was touching it was also quite hard to handle. 

Dr K wants to see me next week to talk about options for other trials. So there’s something to look forward to. Onwards and flatwards....

xx

Oh D that is pure s***. Fingers crossed 4 more trials.

Something similar here except the lungs, liver & bones were stable & little evidence of disease but the breast tumour were multiplying & growing.

So not fair!

I didn't get home 2day as infection markers had gone up although I feel better. Good news is nursie tells me I'll only get woken every 4 hours 2nite.

Take care hun,

WB xx

Oh ladies you are so brave and here’s me weeping over nothing and feeling sorry for myself because I can’t sleep. 

You are both amazing  

Jo x