Treatment

Hi Kelly, Well done for getting through the tonsillectomy and making light of it - I thought it was horrendous! Like you I had tonsil and lymph node cancer which was treated with chemoradiotherapy. Sorry today has been a challenging one for you, on the information front. We all have different ideas about how much information we want - but now you’ve had “the good, the bad & the ugly” (as someone on this sire accurately puts it) -make the most of it. It is going to be hard during/towards the end of treatment, so try to make sure you have lots of support. Your partner or family and your friends can really help - let them know that you might want some company going in for treatment everyday, and perhaps help cooking meals as you may be really tired/feel sick/have no appetite, but you need to keep eating/swallowing for as long as possible. My husband was busy trying to hold the family together as I went through treatment, and support me and work full time until the last 2 weeks. It was hell for him. I asked my sisters and Mum before treatment started for help and they were brilliant - travelling down from various parts of the country to help out however they could - this was invaluable in getting me through the chemoradiotherapy weeks. So ask now for help later.

And don;t worry about the pain - modern drugs are many and various and you will not be left in pain. Many people on this site have feeding tubes and are very grateful for them when the time comes. I didn’t have one (they “ran out of time” to place one) put in before but managed until 3 days before the end of treatment when I had a nasogastric tube (down the nose) placed which I used for 10 days. I can’t deny it's tough but if I can get through this treatment, anyone can. I’m a total wimp! 

Ask your team/CNS lots of questions to help you to prepare for the coming weeks, and ask any questions here -many of us have got through this challenging treatment and are now getting on with our lives. 

With best wishes,

Hilary

Hi Kelly. Baby steps. Take it one step at a time what feedingvtube are you having ? Is it s peg ? 

Dont worry about pain relief you will get it given when you need it . 

dont stress u will get there look at me there is light at the end of the tunnel my diagnosis wascT2N2NM0 and just before treatment started had gone into several more lymph nodes   Trust your teams around you 

hazel x 

Hi Hilary,

Your post has made me cry but in a good way!!! I've read so much literature and the CNS today was amazing but reading your experience and the impact upon your nearest & dearest is exactly what I needed. 

It's the fear of the unknown I'm really struggling with but your insight has helped - especially with regards to feeding and pain management.  

Friends and family have offered help and support which I will now DEFINITELY make full use of. I have a 5 year old and a 2 year old along with my husband and mum at home and I want to make sure they are supported too. 

Today has just made me realise that this is actually happening and I'm going to have to face it head on. 

I'm sure I will be posting again with more questions so thank you for taking the time to reply xxxx

Hi Hazel, 

Yes it is a peg tube. It was just something I wasnt expecting so totally caught me off guard.

I think my diagnosis is the same T2N2.

I naively thought that life would return to "normal " shortly after the treatment finished but that's not going to happen. 

I am going to access your blog once I've got through all the care planning appointments. 

Thank you for taking the time to respond Hazel. 

Best Wishes

Kelly xxxx

Hello Kelly, I have not had cancer of that area as my three were in different areas of the head and neck, the thing is what you have to realise is not everyone suffers the same or recovers the same from the surgery and treatment afterwards, I  always go for the positive approach and take each day as it comes, because if you think you know what lies up ahead you start thinking of the worst. I can honestly say I did not have a horrendous, grim time and thankfully the peg was a godsend and has never given me any troubles. One of the things I did suffer from was pain, but it was always kept under control with a combination of painkillers. It does alarm you when they come out with a list of side effects but I only had two or three and these were the normal dryness of the mouth, tiredness and fatigue, and soreness of the treated area. I'm sure being so positive helped me cope a lot better plus support from my family, friends and my consultant and his team. Wishing you all the best for your treatment, take care.

                                                                               Chris x 

Hi Chris, 

Thank you for your response. I need to follow your example of taking each day at a time. You are totally right that because I'm jumping ahead and assuming I know for sure what will happen I am already imagining the worse case scenario before I've even started!! 

I appreciate you sharing your experience of having a peg as this has really thrown me. 

Thank you for taking the time to reply to my post and your positive outlook/approach is something hopefully I will be able to follow. 

Kindest regards

Kelly xx

Hi Kelly

Glad to hear the tonsillectomy is out of the way.  We're all affected differently by our treatment.  My experience was that the pain after having my tonsils removed was far worse than anything I felt during the rest of my treatment.  I found it helped to time my pain relief and anti inflammatory tablets so that I took them about half an hour before my meals.  It made swallowing a bit easier.

I had a PEG feeding tube and I was very grateful for having it put in.  It helped me keep my weight steady and I think being properly nourished and hydrated helped me have a good recovery. 

Take care xx

Hi Margaret, 

Thank you for your response. It's interesting to hear your experience following your tonsillectomy as I have struggled at times with managing my pain and was really worried about post-Operative bleeding (thankfully that hasn't happened). 

I'm beginning to feel more positive re. the feeding peg as you are the 3rd/4th person who has viewed it as a positive in terms of recovery. 

Thank you for taking the time to reply Margaret.  

Best Wishes

Kelly xxxx

So sorry to hear you are going through this .I'm not going to lie radiotherapy and chemo is hard I started to feel ill from day 10 getting worse each day .I totally relied on my peg yes I found it hurt for quite a few days but it kept me alive even though I've lost 5 stone .all I can say it was the worst time of my life :( but the staff at Worcester hospital were brill and always at hand .I'm nearly 12 months on now and feeling lots better I still can only eat soft things but I'm here and things do get better not 100% .But still a life worth living ..you sound like you have a great family too .Take all the help you can .I couldn't do much just having a bath was enough and going to the hospital everyday for 6 weeks but remember there is light at the end of tunnel...dont give up and my 3 girls and family got me through take care xx

Hi Kelly treat the peg just like you will treat the mask it’s a lifesaver. I dint get the chance of a peg as my oncologist said with the minim amount of radiotherapy on my left side we www hoping I could maintain feeding. Which I did up to week 4 but I had agreed to a nasal tune if need be and oh boy I did need it ,ok wasn’t pleasant your choice at least is already going to be in place , please use it as soon as you need to. I was tube fed for 45 days and just treat it as anither part if treatment although mine was more obvious  than the peg it’s didnt stop me going out when I felt like I could manage a trip to supermarket or library etc. 

Its  all a process that is well practises , ok the side effects are different for all of us but at least you will have the knowledge that the peg is in place ready and waiting for you. 

Please don’t get stressed if I can do it honestly any one can ,like I’ve said before if I break a nail I cry. 

Keep in touch pass the blog in to famiky n friends they will then have an idea of what you will be going through as well.

take care

hazel x