Another Update from Us...

[DrunkJam_UK]

Good afternoon good people of LC.

I have been struggling with everything so have been a bit quiet. HUGE thanks to those behind the scenes who have bothered to check in, and made me feel remembered and not alone.

DH has been back and forth to the hospital recently, after the appointment he kept on the day of my sister's funeral.

Unfortunately, he has a further new cancer. Most likely this is based in his nasal cavity, but, they will be doing further scans and a Panendoscopy in January to get the best possible picture. (It might be that the nasal cavity is not the primary site. )

This explains his increased hearing loss, sight issues and general speech and vague cognitive issues.

The Dr recommends continuing with the holiday plans for Christmas, since they can't do anything more until January.

I am having my genetic blood test on 15th (if there is a nurse to do it) and had the genetic counselling a couple of weeks ago

Struggling.

[2003UK]

Oh you must be all over the place both of you and now there is the horrible wait and not knowing. I often think medical people do not realise the emotional toll on all with their words and waiting and not knowing.

You have also got your genetic blood tests hanging over you which I expect have been pushed into the background apart from by you, as usual

You also have the children and I expect are getting excited by events at school and the upcoming festive season.

I bet all you see on TV are the images of happy family's celebrations and festivities.

I have been thinking of you loads and been checking my daily HU posts, hoping to see one from you.

I did want to send you a personal message, but it is beyond my capabilities.

Please do use us to say it how it really is for you going through the motions.

Sending you loads and loads of virtual hugs xxxxxxxxxxxxxxxxx

[DrunkJam_UK in reply to 2003UK]

Thank you.

The genetic counsellor was very helpful in explaining that I might as well not just wait to die since, if I KNOW I have Lynch syndrome (and my risk is 50/50) I will have much better outcomes than the general population if I get cancer (mostly because I will be able to have preventative surgery and a lot of screening so anything would be caught early) but obviously getting the tests actually done is a very scary thing!

Not as scary as his tests and treatments etc. Currently they are sure they can manage everything with additional meds, but that's just based on the tests up to now, and because he has some problematic symptoms they are doing bigger and more detailed scans in January. The proton beam therapy he might need is not currently offered in Wales, so... I mean, lets not get ahead of ourselves.

He has essentially shut down, hears basically nothing, struggles to understand things etc. I am a bit scared for the holiday, since he is wildly stressful at home, so...

Anyway, I am off to the optician tomorrow (I have new glasses and I am struggling to get on with them)

I hope all is going well with you?

[2003UK in reply to DrunkJam_UK]

Please let us know how the opticians, your genetic tests, your OH's tests and your holiday plans go.

It must be a very lonely, isolated place plus with all the practicalities of life to sort out.

Thinking of you more than we are in touch.

xxxxxxxxxxxxxxxxxxxxxx for your pocket.

[DrunkJam_UK in reply to 2003UK]

Thank you.

The optician rebuilt my glasses. I did not collect them in person (I had a chest infection so stayed at home)so they did not fit at all, and because they are varifocals, I was constantly struggling not looking through the right bit of the lens. I think they will be better now. I still have to get used to them.

I quite enjoyed my little pootle round town on my own this morning though, and treated myself to a vegan festive bake (J had his 16th birthday YESTERDAY, so we are allowed to consider Christmas things now - We all have fun advent calendars and everything!)

He has one more hospital appointment before we go away, and the kids are both allowed to miss the last day of term to travel, so... I think we are trying to hold out to get a better rate on our currency, but at some point we are going to have to accept it is what it is. Oh, AND, I FINALLY managed to get a reservation at the restaurant in the hotel we stayed in when we got married in Florida (I have been trying for months, but one just opened up yesterday!) which means we can take the children to my favourite place ever, they have food everyone will like AND they have the best Christmas tree AND our reservation is for Christmas Eve dinner, and I happen to know that Santa meets people next to the Christmas Tree on Christmas Eve, so Miss M will be super happy!

With his health news, it also seems like an important connective thing to do to make sure we see it again, and BOTH children can have the experience of it and a mental picture of it.

[2003UK]

You wore me out just reading your post, thanks so much for taking the time to update me.

One hour at a time xxxxxxxxxxx