Hi all 9 weeks after radiotherapy for tongue cancer and really struggling with it all. Stage 3 tumour, hemi glossectomy & forearm reconstruction, neck dissection 2 lymph nodes contained cancer so RT.
I have ongoing cough, chesty like I forever need to clear, is this common from mucus? Sometimes it changes to tickly cough so much coughing can't get my breath im nearly sick. I had chest infections during RT its not as bad now but its getting me down. Just worried its spread to my lungs just scared about everything. Please say this common?
I still can't eat much which really makes me sad, I'm grieving my old life, myself the foods I loved the way I talked. I'm so changed. I cry most days over what I've lost but then guilt that I am saved I'm so grateful to be here with my 2 young children. I'm only 41 my husband 31 we're really finding it hard to move forward with what we've been through. I know its a long road to recovery, maybe if I could eat more foods I loved rather than mashed, I hope this improves. Sorry for the rant, I just thought I'd be managing this part of my recovery better.
How do you move on with the constant anxiety will it come back? Has it spread that's why I'm coughing? If it returns will I beat it next time? Will my babies grow up without me? I'm so broken x
Hi. All this is really common and you are very early in your recovery. Try to be kind to yourself. Dont rush. Recovery is a marathon not a sprint. I wasn’t seeing a proper look at my old self for six months. By a year I was happy with the new me. This disease is awful and the treatment incredibly tough. It knocks you back for months.
If you feel it might help MacMillan offer free counselling
Do call the support line. MacMillan offer a buddy service that pairs you up with somebody who has been through something similar to talk to.
Have a read of Peter Harvey’s article on recovering from cancer.
It’s not the answer but it explains why you are feeling as you do. It helps.
The mouth cancer foundation run a weekly Zoom support group it’s a safe space to talk about how you feel and to share tips on surviving all this I highly recommend it
I can give you a link if you like
Finally, is there a Maggie’s near you where you can drop in? You could take your family They are brilliant! They have courses you can attend, they run support groups or you can just have a chat and a cup of tea
Fear of recurrence can be totally overwhelming but it does fade. Hold onto the fact that this cancer is eminently curable and early treatment failure is rare
Remember it’s alright to feel this way but it does get better
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
I wrote a blog about my cancer. just click on the link below
Hi
So sorry you are feeling so low. You are very early days in recovery terms and most of us went through similar issues to you.
Speak to someone in your team regarding your cough they will be able to reassure you or send you for a scan maybe. I was still on my peg feeding 9 weeks after finishing RT so you are doing really well. At this point you have to think of food as fuel to get you better. Also speak to you Macmillan Nurse you could get some counselling to help you through. Worrying about it coming back is natural it does get easier with time.
I am 11 years out of treatment for base of tongue and 8 years from non related breast cancer so understand what you are going through,
Try to take things day by day and use your team for help, it’s is a bit of a one step forward two steps back during recovery, but things will get better.
Take care.
Sending lots of love and comforting hug xx
Hi As Dani has said it’s a long haul it’s marathon not a sprint take it day by day. 6 months is a good point to aim for ,but realistically around a year. Dani’s covered the points the Peter Harvey article is a good one print a few copies off give to family and friends to read.
There will be light at the end of the tunnel there’s just a few bends inbetween
hugs Hazel.
Hazel aka RadioactiveRaz
My blog is www.radioactiveraz.wordpress.com HPV 16+ tonsil cancer Now 6 years post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help
Thank you very much. I've reached our to macmillan spoken to someone online I'll call them when my baby is in creche this week. I am trying to get to maggies too for their classes and support.
I'll take a read of this article too.
I have aches and pains throughout my body I'm loosing weight quick I'm just convinced the cancer is all through me and with this ongoing cough...
I know its a long road, I hope I'm strong enough x
Thank you for your message. I know it is early as my team tell me I'm just worried about every pain, cough ache just convinced it's bad.
Food is so hard I'm struggling to consume lots of calories. My tummy aches after the ensures now. I will try to focus for my children x
Good evening Tigerlily1983, I agree with what the rest had said about it being early days, maybe it's worth having a feeding tube fitted so you don't lose any more weight, you must get enough calories as it will help you recover and fight off infections, etc as the bodies immune system is very weak after treatment or surgery, I was 48 when I got my first head and neck cancer and had two younger children. It took about three months before I began to feel I was getting somewhere and six months is when you will feel much better and will be able to cope a lot better. It may be worthwhile seeing what benefits you and you are entitled to. I'm sure once you get your weight more stable and any infections cleared up you will feel a lot better, together you can do it it just takes time and your body needs time to recover. I wish you and your family all the best. Take care. Hugs
Chris xx
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