time

Hi, Shaunk The short answer to your question is yes things will and do get better, and no it's not all bad news.

If you finished your treatment mid February it is still very early days in your recovery. Your body has a lot of repairing to do, and it does take time but it will get better as time goes on. I had a RIG which I was 100% reliant on for feeding for about 10 weeks also I lost my voice for about 6 weeks, but slowly things got better. I am now nearly 18 months  post treatment and feeling as though I'm getting pretty much back to normal. There were times when I thought it was 1 step forward and 2 steps back, and plenty of ups and downs, but this is all part of recovery. At times it will feel as if you are not getting anywhere in your recovery but you will get there, just hang in there and try and eat as much as you can manage. You will get there as many on this site have. Never feel alone we all know how you feel and are here to answer any questions that you have, never be afraid to ask. All the very best.  

Regards Ray

Hi shaunk

It definitely does get better in time.  I struggled with coughing up all the gunk and I had problems eating, as many of us do.  I found it a very frustrating time and got extremely impatient with it all.  That was 6 years ago and I'm doing fine now.  

It's good that your weight is stable now.  If you can manage it try to slowly introduce small amounts of proper food.  Perhaps things like soup, scrambled egg, custard.  The people in this group will be able to give you plenty of helpful food suggestions.

Something that helped with my breathing during the gunk phase was Olbas Oil.  It was particularly helpful at night when I was trying to sleep.

I've had a look at your profile and I went down the blissful ignorance route too.  However if you do want to ask anything there are plenty in the group who will be happy to share their experiences and will understand what you are going through.  

Best wishes for your recovery.  

cheers ,yes ignorance was bliss well maybe not but at least it was easier not to have read this site beforehand ,the treatment is horrendous ,it feels like I've been in the middle of my own little nightmare a secret world where if you don't have cancer no one knows what it entails or tells you ,with glib comments like oh yes your neck will hurt a bit or its a bit sore ! talk about underselling !

manged to eat some Sunday dinner today glad to find out I could actually taste the difference between the foods but I did end up getting something stuck in my throat and coughing until it came out of my nose :) I'm just frustrated its so slow I've got things to be getting on with ,I'm not willing to accept half a life if I cant get back to where I was before id rather not bother than waste my time trying and spend the next 5 years in a pathetic half arsed version 

I've noticed that once you've left hospital and treatment ( I was in for about 10 weeks because id stopped eating and had to have a nose feed tube ) but once id left I've had one appointment to have a sort of check up ,I get a scan next month and results end of may, no one really keeps in touch and asks if your ok ,I'm not overly concerned but I can imagine some folk would be lost  ,I thought they would have had someone to ring you up now and then and check how your doing

Hello Shaunk, i agree with the others that it does take time and you have got to be patient if you start rushing things i.e going back to work or not resting when needed it can slow the recovery period down as many of us have found out on here including myself. Im sorry that you had a horrendous time of it all as i can vouch for that 70 % on here get through it ok. Normally the only contact you get after the treatment is the check-ups and no follow up calls, you are right in what you say as some people do worry more than others. Its great that you are making steady progress and im sure you will be in a better before the 5 years.

                                                                            Chris .  

Hi Shaun. We hear you! We understand your frustration. No one warned you the recovery would be so bad and so slow and everyday is a struggle. I felt just like you at 2 months post-chemoradio. Frustrated at making little progress week to week, but wanting to shout,”And what’s in store for me next week?” As different side-effects came to light. But if you look back, you will have made progress and will continue to do so. It’s disheartening that there is so little support - but grab what you can - from this site, by demanding help and advice from your team - if they don’y Ask about specific things like saliva, swallowing, stiff neck, lymphoedema, low mood, etc, then ask them and tell them your particular issues and ask for their help. We can all reassure you that life will be get much better than the “half arsed version “ you have now, but perhaps take stock, re-adjust your time-scale. Nothing will happen quickly and sometimes you’ll take a backwards step. But, from feeling like you at 2 months (as well as cross and a bit bitter too) I an now 18 months post-treatment and life is different for sure, but I can do most things as I did before - I ate a bit of cake and quiche at a party yesterday which I couldn’t have attempted 6 months ago - big gain for me!

So please get support wherever you can. And feed back to your team about the stuff they didn’t tell you and about how you feel. They really have little idea how ghastly it is, and will continue to have little idea unless we tell them! And so people like us in the future can be helped.

Very good luck  - your recovery is underway, but give it time

Hilary

Hi Shaun I share your frustration with the speed of recovery. I’m 6 wks post radiotherapy and am only just starting to eat scrambled eggs and weatabix while having a PEG for overnight feeding. As others have said it will get better I can notice some improvement in my eating after a couple of days. Keep at it. 

Im shocked though at the lack of follow up you’re getting. During my radiotherapy I have weekly meeting with the doctor dietician and speech therapist and these moved to fortnightly after the treatment finished. They were able to prescribe drugs to help me through this without which it would have been unbearable. 

I hope things improve for you soon but keep positive and take it as it comes trying a move forward a little each day. 

Gareth

Shank I can't remember how often I went to the outpatients but it was at least once a month at your stage but more to the point I could phone a Macmillan nurse and they would get back to me likewise the dietitian and speech therapist. I noticed you said no one gets in touch with you, if you have none of those I mentioned I can't think why as I thought everyone with cancer had a Macmillan nurse and if you have get in touch with him/her as they can get to others easier than you can as I found out very early on.

I hope you get it sorted and from the sound of your posts it might be an idea to look into some help with depression as that was a big problem for me and I found that I had to do things to take my mind off the suffering so I would say find something to occupy your mind and do as much as you can when you can. I takes time and is hard but with luck it will get allot better.

Hi Shaunk, regarding follow-up, this seems to vary a lot from area to area of the country. My husband did have appointments every few weeks back at the hospital, where he would see Macmillan nurse, dietitian and speech therapist, plus someone from the consultant team (if they were all available!). Although this was reassuring, it was also exhausting to begin with, because it usually meant a whole morning or afternoon spent mostly in the waiting room for a series of 5 - 10 minute appointments, and he was barely able to be out of bed for that long. Also that waiting room is now probably the most stressful place in the universe for him due to all the horrible associations with diagnosis and treatment. Other follow-up was supposed to be via the GP  - also very difficult in practice. So the support was there, but we maybe didn't always appreciate it because of the energy required to access it.

I think what someone else in this thread said is really very true - most of the medical practitioners we came into contact, apart from the head and neck cancer experts, did not really understand the awfulness of the treatments and the debilitating effects they have for the first few months afterwards. BUT it does get better, and life can be a lot of fun again.

Hi Shaun I Amman 8 month post radiotherapy for tonsil cancer and yes agree no one tells yiu how long and how bad the recovery period I said. I too didn’t have a peg wasn’t deemed. Necessary but ended up with feeding tubes.  We are all different in Hiw we respond i a man niw eatung mostbrhings meat is difficult nitbeven tried alcohol but didn’t really drink before. 

I have a blog detailing my treatment and recovery 

www.radioactiveraz.wordpress.com give it a read u might mind some usefully tios

good luck hazel

I cant seem to reply to everyone because of this stupid format of a forum ! anyhow in short nope ive not ever had a phone call or contact from a macmillian person at home or in hospital ,a bloke came to see me once from tenus then disappeared never to be seen or heard of again 

id say I had far more support when I  had my hernia op than anything to do with cancer ,its crap