Overwhelmed when given the list of appointments for husband's CRT - Tonsil Cancer HPV +

Hi Fry

What you’re feeling is normal. I felt that my life wasn’t my own any more but I trusted my team and let them take over and run it for a few weeks. My hospital was two hours away on a bad day so sometimes they had my whole day but I never felt they took it away from me. It was theirs to start with. I wrote my blog to have control over something and as treatment progressed lost myself in reading. 
It is a treadmill but it stops pretty quickly. I accepted that. 
If you both can you’ll find life much easier. It doesn’t last forever. Hugs 

Thanks Dani. 

I keep looking at the list. It's hit me massively today. It's real. It's scary and seeing him with his head pinned down in the mask has just broken me. I'm so scared for him.

Very much so. It was daunting at first, but we faced it week by week, and looked no further. We had a humpday Wednesday, and a high five Friday, and we counted off when he was 1/3 or 1/2 or 3/4 way done. We even had a last ten days countdown. Kept us sane anyway . It’s a lot, but before you know it you will be done and out the other side xx 

Try not to be. How does he feel? 
Under that mask is not as scary as you might think. 
He will need you much more in recovery which is when the real work starts. Make time for yourself through all this. You get through day be day and really, the time flies and becomes a distant memory. 

Fry7b5361 said:

It's scary and seeing him with his head pinned down in the mask has just broken me. I'm so scared for him.

Don’t be apologising. Your feelings are valid. 

I had a feeling of everything being overwhelming when I got my RT appointments through as there were so many of them, 6 weeks so 30 appts. I had a cry initially but then I remembered that all of these were necessary in order to get back to good health. I finished in December 20th last year so there was the added emotion around Christmas thrown in there too. In truth, for me they came and went very quickly and it’s hard to believe it was nearly 1 year ago. 

Yes, to them it’s a list of appointments and we’re all just patients for them but the treatment is tried and tested and they know what they’re doing. The mask isn’t the worst to be honest, I found it quite comfortable. Strange I know. 

Hello Fry.  What you are describing is very similar to how I felt during my treatment.  I felt like I had no control over my life anymore, and the endless appointments started to get me down.  I had a chart with all the appointments on and I used to take pleasure in crossing them off with a big fat marker pen as I went along.  Each weekend I'd choose music to listen to, and books to read, for the forthcoming week, and I tried to think of that in a positive way.

My late mother had the great idea of preparing a stack of "treat" envelopes for me.  I'd open one each day when I got back from the hospital.  Some examples of the contents were things like a lottery ticket, or a packet of seeds for the garden, or perhaps an inspirational quote. 

Sending you a hug, you'll both get through this.  

Hi Fry

What you are feeling is completely normal. As it is your husband going through this process you might begin to feel a little helpless as you will see what is happening and feel that there is nothing you can do. This would also be normal but as Dani says put your trust in the team, mine were amazing. I was your husband 3 years ago and my Mrs was you. We went through 6 weeks of treatment which in the main passed surprisingly quickly. We also did hump day hooray's and high five Fridays, to amuse ourselves we did things like put together play lists for the treatment sessions, had smoothie evenings where we came up with all sorts of nutritious stuff we could blend. 

Dani's advice is also really important and that you make time for yourself throughout all of this. Making that time is really important for you and your husband and is in no way selfish.

To give an example I had a list of my Mrs's friends on a WhatsApp group who i could call on to take her out for coffee or a meal or just go for a walk and a chat as i did for myself. There were times when i know she needed a break to recharge or just have a change of scenery and having that support group was invaluable.

All of this was 3 years ago in October, which have just raced by and all seem a bit of distant memory.

Good luck over the next couple of months I will be rooting for both of you.

Hi and firstly a big hug from me.  I guess seeing all the appointments has made this a reality rather than just something that will happen at some stage in the near future.  It is a treadmill, but try and look past the treatment to a time when you are both able to enjoy life to the fullest once again.  I suspect Christmas this year will be written off, but look at the outcome as potentially the best Christmas present you will both have been given.

As has been said the mask will become his friend very quickly and it is not scary to most of us.  It is fascinating watching the engineering of the LINAC (the radiotherapy machine) working to make sure the treatment hits the right spot.  If your husband is in the least bit nerdy he will be enthralled by it.

If you can try and find a support group for yourself whilst he is having treatment and other appointments.  We were incredibly fortunate to have a Maggies at Southampton.  They gave me a place to be safe between appointments and for my wife (and other partners of patients) they had amazing support groups e.g. crafting, music, or just chatting.  Having her supported took a weight off my mind.

Everything will soon kick into place and become routine for the next few weeks.  Just go with the flow and try not to plan too far in advance.

Can I just say a huge huge thank you to all of you. You are the most supportive group of people who use the most reassuring words. It's been a really emotional day and reading your comments has made me feel like I have people who know exactly how I feel routing for me and my husband. Thank you just isn't enough. 

Fry7b5361 said:

Thank you just isn't enough. 

It is. Look after both of yourselves and stay with us.

Forget Christmas but keep room for chocolate Easter eggs and a  weekend's away somewhere safe and indulgent.