Last Update (21/05) - Ho Hum, Seconds out - Round 4!

Hi Peter. Thanks for the update. These pages are populated with many people who have walked the same road or who still are so you have lots of help here. 
Dont hesitate to ask for it. 

PFJTHS said:

Anyway grilled the oncologist at Southampton for a couple of hours before I was comfortable with the treatment plan

PFJTHS said:

Just to note...  I'll not be doing alcohol through the PEG! 

I suspect your oncologist has hurried home and had a well earned large glass of wine. 

Hi Peter

After 4 years of chasing this cancer at least there is a final outcome at last although not the one that any of us want. Good luck with the radiotherapy. You are armed with lots of info. We are all here to support you and thank you for all the great info you supply to the forum. I have found it really useful.

Lyn

Well, a lot happens in 48 hours!  Having been told on Tuesday afternoon to expect 6 - 8 weeks before treatment starts that was my plan for Christmas and the New Year.  However, on Wednesday I got a call for an PEG assessment appointment in Salisbury on the 28th, which was fine and fitted the timeline.  Then yesterday Southampton rang to see if I would "pop" in (just 100 mile round trip) for a mask fitting and planning CT this afternoon.

So here I am on the last working day before Christmas with a nice new mask and medical physics working out the angles and dangles for the first session on 8th January.  So soon!!!

A quick call to Salisbury to warn them that I need the PEG ASAP and hopefully I'll finish the RT on the day before my birthday.  That said I'm not sure I will enjoy this birthday - maybe I will save it for 2025!

Just back to the mask.  The process was actually quite pleasant and they have new masks (only been in use for a couple of months) that have eye and mouth holes pre cut.  I don't think I can insert a photo but if anyone wants to see it just PM me and I will send over a photo.

Alas Southampton don't use tattoos (they mark up the mask instead) so no bragging rights for me...

Hi In my opinion the sooner you start the sooner it’s over. Good re mask, I had eye hole nose and mouth cut  out  it did help me.

Hazel 

PFJTHS said:

Just back to the mask.  The process was actually quite pleasant and they have new masks (only been in use for a couple of months) that have eye and mouth holes pre cut. 

Yes. Times move on. Mask and tattoo. 
My mask was marked up but still got tattoo. It was useful having mask and planning all at once on the simulator 

Lots of masks now look like this 

Mine was like this 

RadioactiveRaz said:

Hi In my opinion the sooner you start the sooner it’s over.

It’s all about capacity. 
I had to wait 8 weeks after planning to get to the front of the queue. 

Hi Peter

That is such a long way to drive for your mask fitting. Will you have to drive to Southampton every day for your radio? If so it's a pity that they can't do it in Salisbury. (As an aside I was born in a small village near Salisbury before we migrated to Australia. It is such a pretty and historic place, but I digress) I was so lucky as my radio was only 15 mins away which was the only plus in the whole situation. You might just have to go and have a tattoo when you have finished your radio to mark the milestone. I know some people hold onto their masks after treatment finishes but I have to say I was so glad to finish that I told them to throw it in the rubbish. I had radio twice over the years and I felt the same both times. Everyone's different.. I know Hazel held onto hers and brings it out  from time to time.

Good luck with the radio. At least you will get in your Christmas dinner.

Sending hugs

Lyn

Salisbury does not have LINACs.  So it is Southampton or Bath (Swindon have recently opened a centre as an offshoot of Oxford).  I was offered Bath as an alternative but I did not want that as they would have to, in essence, restart the review process.  That may have been OK for a "standard" H&N cancer, but my journey has had so many twists and turns that I wanted to remain with my clinical team who have intimate knowledge of me, much of which cannot be effectively conveyed in the standard notes.  At least for some of the work and for the ongoing care I will revert to Salisbury

I can see why you want to stick with Southampton as they are so well versed in your journey.

Sending best wishes for your treatment.

Lyn