Busy couple of weeks coming up

Lovely photographs. It looks like a very special weekend and I’m so glad you were able to enjoy it. These occasions are very special. Happy memories

Polly

Hi Tvman 

Sorry to hear your daughter sad news she is right though special daddy hug r the best never forget my hugs from dad 

What a small world my daughter dont live far from Peterborough she is in wisbech 

Take care even though a sad visit  enjoy your time with your daughter 

Kym

That looks like an amazing day Daloni. Your daughters are beautiful and I’m so pleased you managed to stay up and enjoy the evening. A nap at the right time does wonders I find. ️

tvman safe travels today and enjoy the hug when it comes, so pleased you will see your daughter today.

gorgeous girls and family, I’m so glad you had a lovely weekend xxxx

What was that loud thumping noise I heard? Oh. That’d be me hitting the ground. Seriously guys, you couldn’t make it up. 

I had the pre treatment appointment ahead of the third of six weekly immunotherapy sessions yesterday. You may remember I had an adverse infusion reaction after the first two so I was keen to talk to the doc about managing the possibility it would happen again this time. So was she. The answer: book a bed and if I have an adverse reaction I stay overnight. This is going to be necessary for each of the next four infusions. 

It is the obvious solution and absolutely necessary from a safety and practical point of view. I have recovered quickly after each reaction but there’s no guarantee that I would do so again. And I was not capable of getting home immediately after the last adverse reaction. I needed that night in hospital. But of course causes ripple effects. 

The first is what to do about my daughter and the dog. That’s relatively easily solved. I’ve found a dog sitter. Daughter will stay with her dad one night and friends the other three. The second is the knock on effects to the kidney surgery now planned for November 11. 

Here’s the problem. If I stay overnight in a London hospital (where I have the immunotherapy)  then Maidstone Hospital (where I am due to have the stent removed) demands a CRE test to make sure I am not carrying an antibiotic resistant gut bacteria. If I stay at UCLH on a Wednesday, a CRE test would involve collecting a stool sample on Thursday, Saturday and Monday then getting it to the hospital for analysis.

The consultant urologist operates on a Monday. But he can’t operate without the CRE test result. If I stay in hospital on a Wednesday, he can’t get a CRE test completed ready for Monday. 

It is....frustrating. I have emailed the urologist to ask his advice. Unless they drop the CRE requirement, I can’t see any other solution than to delay the stent removal until after November 20, the date of the final immunotherapy treatment. The immunotherapy treatment day can’t be moved as it involves a whole team of people behind the scenes doing various complex immuno assays. I could come off the trial but I’m reluctant to do so. 

Meanwhile I am increasingly debilitated. I can walk approx 50  yards before I need to stop, bend over to recover from the pain and discomfort and get going again. I’m going to start using a walking stick tomorrow to see if that helps.

I am looking for as yet untapped reserves of stoicism. Just how deep do those still waters really run?

xx

Daloni. Talk about a rock and a hard place. You must be really struggling even to get into London every week if you're in that much pain. Really hope your urologist can come up with something sensible in terms of a plan.

Big hugs P xx 

dear daloni, I am sorry to read of the angst you are suffering surrounding your treatment. I’ve been there done that and bought the T-shirt as they say ! Regarding your mobility, I have similar problems but since I got myself a walker with built in seat I feel confident to go out and about as I can sit down and take a breather if I need to. Also it gives me stability when walking and people tend to clear a path for me, it’s like the parting of the Red Sea ! I wish you well with all your upcoming appointments, hang on in there.

best wishes

jane

I don't know what to say, Daloni. You sound very low, and no wonder. You seem to have obstacles getting in the way of obstacles, and your pain is increasing all the time. I wish I could help. 

I think you have done the right thing in passing the problem back to the urologist, since the issue is with his and Maidstone's timing and requirements. I wonder if he could schedule your surgery for another day?

Have you had a chance to have a conversation with your family members about where you are now? I know you did'nt want to do so before your niece's wedding at the weekend. I think it's time now, though. You are such a trouper on this site, always finding a positive spin, always putting a brave face on. If you are the same in your real life, they probably don't realise how difficult things are, and how much pain you are in. I think you need to be very clear with them, and let them know that you need their support.

You are a true community champion, Daloni. You boost so many of us, and help carry us along. So lean on us, too. We're here.

Thinking of you.

Hi

I have talked to my older sister (mother of my nieces) and to my daughters. Heartbreaking, obviously. I’ll talk to others as I see them and they’ll talk to each other anyway. We will all settle into this new landscape. 

xx

Hi ,

So sorry that you are suffering whilst all this is being sorted out.  You must feel like you are battling the systems meant to help you and whilst increasingly in pain.  I know the frustration of dealing with different departments and hospitals and it is something where it would be much easier if they could talk to each other rather than relying on sending each other letters.  If your Urologist and the doc leading your immunotherapy team could talk to each other surely they could sort out something.

Is the Urologist not able to operate any other day?  It looks to me like if the surgery could be pushed back by even a day this should be possible to resolve?  I would forget the stoicism and try having a tearful rant at them about how come they cannot just sort this out.

Whilst walking sticks are a bit inconvenient when you sit down they have infinite uses other than just as a walking aid.  They can get you seats on busses and trains, to the front of queues, hold open doors, stop bits of paper on the floor from blowing away, move things that you would rather not touch, pull chairs towards you and on one occasion mine was even used as a boat hook.

I hope that the powers that be get this issue resolved for you soon and that you can get the treatment that you need.

love and hugs,

Gragon xx