Hello & Help

Hi Karen and welcome to the community.

As Dani mentioned I was diagnosed with the same cancer as you earlier this year. I completed my treatment in July (also chemo-radiotherapy) and I’m now in recovery awaiting my follow up PET scan.

Just to echo what the others have said - you will find lots of support and information here so please do ask questions and if there is anything you want to ask me I’m very happy to help.

Treatment is hard but you will get through it. One day at a time became my mantra and I’ve already made lots of progress in terms of my recovery compared to where I was 10 weeks ago.

Sending you a virtual hug, it’s a scary and stressful time when first diagnosed but once treatment gets underway you will start to feel more in control.  

Please do feel to get in touch or ask me any questions x

Thanks Becks. Hugs 

Hi. With my treatment I had a planned 3 x 10 hour chemo onlyhad 2 sessions and 35 radiotherapy. The chemo I coped very well mine was cisplatin the radiotherapy sides effects do take longer. As a rule of thumb as we are all different the first few weeks for me I slept and spent a lot of time doing nothing apart from recovering. I lost the love of reading and my concentration was poor. I started eating around week 3 and by week 6 was eating small meals little and often. 3 month is a big milestone for many if us. You’ve to remember the treatment is brutal and it’s a sensitive area that’s being targeted. Saying that in my first year I travelled to Spain twice by car and twice by plane. Best advise don’t overthink it and take everything one day at a time. As honestly ine day you may feel ok the next can be a case if 2 steps forward and one step back. 
The treatment is cumulative so by end if it as my oncologist said he was going to cure me but in the process make me feel iller than I had ever been.  He was right in both statements.

But it works remember that. 
If yiure staying in hospital Monday to Friday make sure you have a plan for pain killers when needed as sometimes hospitalmdo tend to forget from previous people on here’s experience. Plus if you’re struggling to eat no amount if puréed food they may try to give you will work. Ask if you are  having a peg or rig fitted..

hope this helps 

Hazel x

Thank you so much, I really appreciate you taking the time to respond. I feel like I have a thousand questions but as many people have said each individual journey will be different. At the moment I am feeling really well with no symptoms other than lumps in my neck and some fatigue. I am hoping my treatment will be finished for Xmas and then I can focus on recovery in the new year with a hope that I will be well enough to enjoy Springtime. As you say although I am nervous about treatment I am also keen to be more proactive, as I am sure you will understand it has all felt a bit of a blur. Again many thanks for your reply. Karen x

Thank you so much for the detailed reply that was really helpful. When I met with the Oncology team last week they said they were going to hold off with a feeding peg as I am not having any current trouble swallowing. Thank you for the tip re the pain killers. I am trying not to over think it too much but as I know you will understand I am doing! Many thanks :-) 

Karen don’t worry too much about not being offered a feeding tube. I had a nasogastric  tube in week 4. Swallowing got painfully impossible and my team were quick uff the mark in having it placed. Unfortunately it was over New Year with no dieticians on duty so I ended up in hospital for 4 nights. I had a window side bed and watched the fireworks on Mumbles. Very pretty. 
If you need help swallowing you’ll be sure to get it. The NG tube saved my life. I lost little weight and I put my uneventful recovery down to that and the skill of my team. 

Hi Karen mine was fitted week 3 ng tube I was fine first 2 weeks it was only later in week 3 it became harder to swallow. You might well not need one we are all different as we say. Yes we were all guilty of overthinking and stressing. Once treatment starts your head gies ti a better place. 
Hazel x

Thanks Hazel your advice is reassuring. Karen x

Thanks Dani this is reassuring to hear. Lovely to hear that even in the darkest times we can find joy. Karen x

Get the Booklet from Macmillan, it addresses the issues around your particular type of cancer.  I read through 2 or three different ones. I've found the information to to be honest as it can be, everybody is different and the nurses that you can contact have been very good.  This Online Community is helpful what I regarded as silly questions really but to me they were central.  Ask on here, somebody will know and if they don't somebody will find out for you.

Good luck see you on the other side!!!!    X