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Head and neck cancer

A place for people affected by head and neck cancers, including oral, throat , larynx (voice box), salivary glands, middle ear, and sinus and nasopharyngeal cancer. Support one another, ask questions, and share experiences.

Twelve months today

BrandyGirl
Posted by

Hi one and all,

Not posted for a while but dipped in and out to read other people's posts.

Today is twelve months since our world changed forever.  Hubby was diagnosed with Head & Neck cancer and all that followed is similar to everyone else's journey.  We were going to go out  (bearing in mind all the social distancing etc) and celebrate reaching this milestone but today we are both just as emotional as we were twelve months ago.  Why I do not know as we are both happy he is still here.  Perhaps its just a grim reminder of all that has happened, it never goes away, you dont forget but usually you just get on with life and living.  

Hubby has not had any follow up consultations, which was to be monthly, since January this year - all cancelled due to Covid19.  Cannot even get hold of Oncologist other than leaving messages on answerphone which are not returned.  Wondering if other people post-treatment are experiencing the same.  We know that the hospital he attends has had a large number of Covid patients but it is also a very large city hospital that has a number of sites so can understand that.  Just concerned what is happening and how others feel about not being followed up.

Perhaps now I have got it out into print and rationalised my feelings we will go out for a drive and park-up somewhere quiet for a little picnic.  Life goes on after all.

Stay safe everyone

BrandyGirl
LindaWT
Posted by

Hi  BrandyGirl

Lovely to hear from you.

I'm sorry to hear your hubby hasn't had any follow up consultations since January.  I have to say I think that's pretty poor.  Most people I believe have at least had telephone consultations.  I had one recently to replace my face to face consultation and nasoendoscopy and while it was pretty basic the consultant did stress that if I was at all worried about anything I must get in touch and they will see me.  I know there are cases of Covid in my hospital too so they feel it's safer not to attend at this time unless absolutely necessary.  Was your hubby allocated a specialist nurse or is there anyone else on the team you could contact, just for confirmation at least of what the plan is for consultations?

I hope you manage to get out for your picnic today.  Sounds lovely.

Take care and all the best.

Linda x

Beesuit
Posted by

I haven’t been seen since January and have an appointment next week. We shall see. The last one was just a quick chat over the phone. But I have been told to make them aware if I am worried. It’s all I can do. 

Dani
Squamous Cell Carcinoma base of tongue diagnosed September 2018. T2N0M0. 67Gy radiotherapy over six weeks December/January 2018/19
The blog is my personal cancer journey, warts and all. 

RadioactiveRaz
Posted by

Hi Brandy girl 

welcome back glad you are getting in with life , I had my last face to face appointment in February .i am at the moment in every 3  months I had an appointment come through for late May then 2 weeks prior I received a ohine call asking if a phone appointment would be accetias I am niw in the 18-24 month bracket and ent are trying to see new patients and people who have finished treatment and in the stage leading up to 18 month. The phone call was with my ent specialist so we had continuity I asked for thyroid blood test and 2 days later form came for me to go for it. He also told me I must ring my Macmillan nurse if in between now and my next appointment I had any concerns and he would see me . I rang my Macmillan nurse this week for results all ok. 

Do you have a Macmillann nurse or c n s nurse you could  ring to make sure hubby hasn’t slipped through the system , or ring appointments give his n h s number and ask for an appointment? Just a thought if yiu didn’t get a face to face a telephone call would reassure you hopefully 

if you got out for picnic hope you both enjoyed it.

best wishes Hazel x

Hazel aka RadioactiveRaz 

My blog is www.radioactiveraz.wordpress.com

i give a honest account of my experiences with tonsil cancer 

T2N2NM equals tumour size 2-4 cm 2 affected lymph nodes  later changed to several after pet ct scan NM no distant metastatic .35 radiotherapy sessions and 2 out if 3 planned cisplatin chemotherapy sessions.   Now fast approaching the 2 years since end of treatment. Good luck to anyone starting out will always help if I can  

Piya10
Posted by

Hi

I too wonder if he has slipped through the net. I am with Georges in London, last face to face February but, letters have been sent with monthly appointments that have been replaced with ENT consultant telephone calls and they have been superb. My treatment last september was at the Marsden so my Macmillan nurses there have also said they are happy to hear of any problems as they know Georges is inundated. I know it isn't as good as a proper examination, but a phone call is still a bit reassuring.

As others have said, give them a call, and I hope you have some luck.

Tricia

Piya10