PET scan update

Hi Helef. Well done in your resumes. I felt numb when I got my pet ct scan result’s . I didn’t cry we drove  home  almost in silence  it was like ok what next . For maybe 6 months  life has revolved around cancer and hospitals appointment s etc. Good  luck with acupuncture I found it  kick started my saliva. it takes time but you’re well on the way to recovery.  
Hazel 

Well done on getting this far

Acutely I felt smashed to pieces when I eventually got an all clear. I had a hot spot on PET and a biopsy afterwards so it was all a bit prolonged. Afterwards I couldn't cope with folk telling me how well I looked when inside I was battered and still hurting. 

I too had swelling in my throat that was put down to lymphoedema. I used to wake up in the morning unable to speak. It did get better.

Helef said:

Did anyone else find they found it hard for it all to sink in once the cancer had gone? I’ve been really emotional all day today whenever anyone mentions my results and how well I’ve cope with what I’ve been through.

This is so common it's hard to understand why there isn't some counselling for it....after all most of us get some form of post diagnosis evaluation from Macmillan via the hospital prior to treatment.

Have a read of this by psychologist dr Peter Harvey attached to Leeds cancer centre. It's a real eye opener. Print a few copies out and distribute them to friends and family. After the Treatment Finishes....Then What?

Thank you Hazel this has given me some reassurance that I’m not alone with the way I’m feeling. My crying started at the hospital when my ENT consultant ask how I was feeling mentally. He said we always ask how your feeling physically and about pain but often forget the mental toll that treatment takes on you. I couldn’t even answer him for crying. Poor guy probably wished he hadn’t asked as it was the first time he had seen me again post treatment and I walked out an emotional wreck. 
I think I shocked my husband too as I’ve never really been one to cry. 

Thank you Dani, I am exactly the same on the outside I look absolutely fine but on the inside I’m still in pain and definitely not healed. We had my husbands brothers wedding over the weekend and his uncle who hadn’t seen me since before treatment said you wouldn’t know you’ve had cancer you look so well, I’m so glad your better. I couldn’t comment as all I wanted to say is I’m far from better and still have a long road of recovery ahead. 

I am glad to hear that your voice did get better. The ENT consultant gave me cause for concern today when I mentioned needing my voice for return to work. He said can your role not be changed as you will always have difficulty talking for long periods of time. 

I too can’t understand why no counselling is offered post treatment as I think following diagnosis you have an action plan and know what you’ve got to get through which keeps you focused and are regularly in contact with your care team but following treatment your pretty much left to get on with it being seen every 3-6 months.

I will have a read thank you. I always find coming on here and talking to people who have been there and really understand so useful. I aim to continue checking in when I can to give support to others at different stages in their journey too. 

Hi Helef. Sometimes I despair at the lack of consideration the consultants have especially when they’re first with the neck cancer patients. My voice was croaky after treatment and yes if u talk a lot without a sip of water it’s husky.  But ……. Kerp with us on here we will help you. How’s your saliva that  effects the vocal cords I use orbital in blue drum similar free gum ut stimulates the saliva glands. I chew then park it in my cheek until I need it again. At night t e j use 1/2 an xyimelts even now at 4 years. 
I also had auricular acupuncture which kickstarted my saliva. 
hazel x

Thanks Hazel, it really did shock me as my oncologist has been so supportive and all along has said it will get better. I completely lost my voice during treatment so go have the limited voice I currently have is a big improvement. I still have no salvia which probably isn’t helping. I need to try chewing gum again the last time I tried a few weeks ago I struggled with it but then I was suffering with ulcers at the time so that could have been why. I also need to try Xyimelts again I tried them when my salvia first went but was still suffering with excessive secretions so couldn’t manage with them. Now the secretions have eased a lot I may manage with them. I’m hopeful the articular acupuncture helps. 

To add insult today I had a call from the insurance company who deals with half pay from my employer, (I’ve been receiving SSP since may when my 8 weeks of full pay finished). Even though they had received my full medical reports back in June when they first requested them they wanted to speak to me today for an update on my condition and find out why I’m unable to return to work yet before they will decide whether they will pay half pay. I explained my current symptoms and then she said I can hear your voice is strained but does that restrict you returning to work. She concluded that she needed to go back to my gp to gain further information before making a decision. This made me feel like she didn’t believe the side effects I still have and that I’m finding excuses not to return to work in fact I am desperate to be able to return to work but know until my voice is stronger this isn’t going to be practical. 

Hi Helef. Oh dear that’s all you need in top of everything else. Head and neck cancers are sadly not in the radar of many people. The numerous times I’ve had to explain my tonsil cancer when dealing with holiday insurance. I’ve had people saying h p v cervical cancer ummm nope. As Dani has said we may look well but the sheer fact our treatment affects the most basic part of living. We’ve have radiotherapy ti our mouth and throats .I Try  to explain we’ve been burnt by  treatment in a place we can’t live without using, we eat drink talk breathe with our mouth and throats,Our side effects can be many and some don’t present until further into recovery. .on the outside we may look well but inside is a different tale. Maybe the insurance company should contact your consultant as your  g p might. not have all the relevant facts. 
withnthe chewing gum I break in half, there is also Dr  Peppersmith chewing gum you can  try.
Good luck Hazel 

Helef said:

She concluded that she needed to go back to my gp to gain further information before making a decision.

Get your oncologist on the case. Your GP won't have a clue. While you're at it give your GP Pater Harvey's article

Hi Helef

Congratulations on your results and thanks for posting this - I’m now 9 weeks post treatment and waiting for a PET scan date so your post gives me hope.

Wishing you all the best with your ongoing recovery, it really is a tough old slog and I hope the issue with your insurance gets resolved soon too.