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.

Parotid Gland Cancer

RadioactiveRaz
Posted by

Ouch presume hospital doesn’t have patient transport either ,I know a lady in Edinburgh who is 2 hours away in borders and they are treating her in hospital  Monday to Friday out for weekends . You should be ok first few weeks I just couldn’t face the drive into Leeds every day on a bad day we were 90 mins away due to trafafix on a good day 45 mins. Will be thinking if you Monday  please keep us updated .

Hazel

RadioactiveRaz 

Beesuit
Posted by

Chris

i was  a four hour round trip from my RT

what the hospital did offer was a free residential hostel on the top floor of the RT unit. 

As for me, my husband was OK driving but it made the days when I was seeing my Macmillan support nurses and my oncologist’s registrar  as well very long ones. 

It might be worth checking that out. 

chrisuk1
Posted by

Thanks Beesuit. I will enquire about that. I want to avoid patient transport if at all possible.  A few years ago I had to use it when I injured my leg. You can be sitting in the minibus for hours if they had lots more people to pick up. And the same going home if you are the last to be dropped off.

Best wishes, 

Chris 

Alichapp
Posted by

Chris, my husband had to use patient transport 5 days per week for 6 weeks as I was working in Germany during the week. My employer let me stay at home for 6 weeks during surgery and immediate aftermath, but then I had to go back. His patient transport turned out to be taxis/uber drivers and he was usually on his own. I think minibuses May be a thing of the past - worth asking how they do it now in your area.

chrisuk1
Posted by

Hi Alichapp.

I'm being treated at the Royal Marsden in Surrey and unfortunately they appear to use minibuses. I've seen them parked outside. But I will check with them next week. 

Thank you, 

Chris 

Alichapp
Posted by

You are probably rather more urban than us, then - husband was travelling 20+ miles each way to Gloucester for the radiotherapy, and I don't think they can easily make minibus routes work in more rural areas. Good luck!

chrisuk1
Posted by

Hi everyone,

Well I began the 30 days of radiotherapy on my neck today. I was told to get there 30 minutes early. I don't know why because I waited 30 minutes to be seen . Afterwards they wanted me to have a blood test. I walked what felt like miles to the blood test dept. only to find it packed with people waiting. As it was 3pm and I didn't want to get caught in the rush hour traffic I told the receptionist I couldn't wait for hours. She said it wasn't a problem and to try again tomorrow.

Anyhow, I now know what a microwave meal feels like when they placed the mask over me and switched the machine on. 

Chris

Beesuit
Posted by

One down 

29 to go

seriously you’ll be fine but more cooked inside as the days go on. 

Have you got eye holes cut in the mask? 

You can watch the machine go round you and see the pretty patterns as the bean changes. 

Beesuit
Posted by

Beam not bean

RadioactiveRaz
Posted by

Hi Chris yep good choice if words the analogy of being in a microwave , what uitbsis ti me was melt my tonsil and melt my uvulva the g

dangly bit at back of throat so defiantly microwaved and at end my own body parts yuck ! Once treatment starts you get into a routine like beesuit says  29 to go . Are you having chemo as well ? 

Hazel

RadioactiveRaz 

chrisuk1
Posted by

Hi Beesuit,

No eyeholes, Just a hole for my nose. They did play me some nice music as they cooked me though!!

Hi Hazel,

No chemo. Apparently the cancer I have is so rare they haven't got round to inventing a chemo drug that is effective against it. Hopefully that will change in the future.

Thank you for your messages and I hope you are both well.

Chris

chrisuk1
Posted by

Hi everyone.  I hope you are all doing ok. 

Well I've just started my 3rd week of radiotherapy and some of the side effects kicked in with a vengeance yesterday. My mouth and tongue are raw and covered in ulcers. I can still swallow but it's very painful. The hospital have supplied me with Ensure drinks, codeine and a Lidocaine gel. I've got another 4 weeks to get through. It looks like it's going to be tough.

Best wishes, 

Chris

Alichapp
Posted by

Oh Chris, any of us who has been through this, or supported a partner through it, will be empathising strongly with you right now. You will get through it though. As lots of people have said in other threads, don't be backward in coming forward to your medical team if you think you need more pain management or help with nutrition or anything else.

Beesuit
Posted by

Hi Chris

hang on in there. 

Its important to keep your mouth clean so use all those mouthwashes your team gives you. I found Biotene helpful but the best was Caphasol which are effervescent tablets you dissolve in warm water. 

Codeine never touched my pain so I got Oramorph which you can take every two hours if you need to. 

It and codeine cause constipation which you don’t really want so get some laxative. There are various liquid ones your team can give you. 

Good luck. 

chrisuk1
Posted by

Thanks Alichapp and Beesuit.

I must admit I did wake up this morning thinking is it all worth it. My mouth was so painful and I've still got 4 weeks of this to go!

I took your advice and ordered some Caphosol. If it helps I will ask the doctors if they can prescribe it for me.

They mentioned the Oramorph if the pain gets too bad, but I want to avoid it if possible. I have to drive and so I'm worried about taking morphine. Insurance companies take a dim view of it.

I've been using Calendula cream on my neck and cheek and so far (touches wood) I've had no skin problems. But I know there's still plenty of time for that!

It's a full time job having cancer isn't it?? And very expensive!!

I made the mistake of reading about a young American athlete called Gabriele Grunewald. She had the same cancer as me on the same gland. I wish I hadn't read it.

Onwards and upwards!!

Best wishes,

Chris