Where's the after treatment advice?

Hi.

I'm 10 days after treatment and I'm the same i have not been given medical advice on if anything improves the healing and body.

What i have done since I was diagnosed in October is take 1 each day of Vitamin c,Vitamin d, b12..not sure if it helps but it's psychological for me..

Fir me also I'm trying to cut stress from my life and stop worrying about things we have no control over..

My goal is to get back to gym.. spend more time walking outdoors and be as healthy as I can..within reason

I also make sure I drink lots of water each day and I'm trying again do start my pelvic floor exercises..

My diet is still poor and only managing very beige food like toast and sweet pancakes..but I do intend to follow the fodmap diet when I feel like eating..

I'm so wanting a glass of bubbles but I'm still taking the oramorph so will have to wait a few weeks..

I'm not sure what the advice is re alcohol once I'm in recovery..I would like to go out with my hubby once a week but again I'm concerned that the wine may cause bowel issues.. 

My plan is to have a trail run mid march in the comfort of my own home and have a couple of glasses and see what happens..its my birthday later in March and would be lovely to think I could go out for a meal and a few drinks..

Hope you get some guidance from the lovely people on here..

Hello Ali and Squeak, 

I am in exactly the same position. 

I had my 6 weeks post treatment check on Friday which was very positive. My oncologist did an internal exam up the bottom and said she couldn't feel anything whereas before treatment she could feel the tumour. I thought this was positive until she said its not the tumour that is the issue it's the Lymph node that was full of cancer and was 5cm, which was the same size as my tumour. (Stage 3)

I asked what i can do to help myself but it kind of fell on deaf ears. I think they are reluctant to advise in case it doesn't help. She did say to keep my healthy diet and carry on with my walking daily and I have started back at yoga ‍♀️  only once and struggled tbh. 

I asked about alcohol and was told that a lot of people struggle with their bowels after alcohol so again squeak like you I will try one at home before stepping out for a meal. 

She said I would be able to fly if I wanted to. 

I'm going away in a few weeks to the Lake District with my chap and our dog and there is a hot tub but I was told to avoid this due to bacteria. 

Ive been shopping today and bought lots of organic clean foods to try and help. Its all we can do i suppose. 

I start back at work in a weeks time and I'm a sales rep which is pretty stressful so I will be watching my stress too. 

I hope this helps. Its just so so hard isn't it. I'm absolutely dreading my first scan in 6 weeks as we all hope and pray to hear the words NED but I know from this forum that it can be the 2nd scan until that happens. 

Good luck if I hear anything else that could be useful I will share. 

Lots of love

Jo xx

Ah that's all very positive Squeak.  - I'm sure you will find your appetite soon enough... and great that you kept going with the multi-vitamins.

And great progress Edjo  Jo, so good to have a get-a-way to look forward too. I hear you on the stress front... it's certainly an area of focus for me too.. which includes trying not to overthink that I have got anal cancer...  Argh. 

So....I gave up alcohol six years ago as I started having really bad hangovers which included not so good bowel movements.  I stick to gluten alcohol free options now but I have a new problem - which is that the bubbles seem to disagree with me!!!

So I take an immune support gummi, and pre-pro biotics - daily. And I'm also back on my HRT (although I go no advice there either). I avoid gluten as that can cause inflammation....  I am walking more and hope this week to get back to swimming (told to wait six weeks after treatment).... 

I did a 15 minute workout on Thursday and my legs are still feeling it today - horrified but I know that I need to rebuild my strength so trying to be kind to myself.  

I'm wanting to do more on a nutrition front... I'm certainly eating less carbs, processed foods and eating more protein.  I'm really worried about sugar, I've always had such a sweet tooth and before my diagnosis I could easily in a blink of an eye... eat one of those family sized chocolate bars - or two Belgian buns... I question if my tumor was hungry....  (Silly?)...

How can there be absolutely no advice for us?  I know that this cancer is deemed rare... but why isn't anyone asking us???

Ali x

Also just to add. 

I am taking turkey tail mushroom liquid (3 drops a day) they have lots of health benefits, may be worth looking at this. I also take vit D, B12 and I am back on my HRT treatment. I squeeze a lemon mixed with fresh ginger and half a teaspoon of turmeric every morning and add hot water as I've heard this helps the immune system. 

Jo xx

I hear you Ali it's so hard. My oncologist didn't even let me know if I could carry on with my HRT as she hasn't reached that age yet and didn't know! 

Yes I've heard that sugar is the enemy and from tomorrow it's clean eating and sugar reduction. I lost over a stone in treatment so I've just been glad to get any food down me so my diet has been erratic. 

I've been listening to Louis Grant Smith re cancer and food if you wanted to Google him it's interesting what he says. 

There are so many contradictions out there it's hard to know what's best. 

Xxx

Thanks Edjo  - I'll check him out.  I stopped my HRT during treatment - it just felt too overwhelming....and I was worried about anything impacting the effectiveness of the chemo/radiotherapy.  I'm glad to be back on it now.... 

Maybe we can start a recipe thread - swapping some healthy meal ideas....  

Hi Ali

My thoughts are seeing as are cancer is hpv related its important to keep a strong immune system to keep the hpv dormant. Gut health seems to be the key to this, i am currently taking symprove to kick start this. I don't buy into the sugar feeds cancer thing, I think if you have cancer it possibly feeds of sugar as that's the easiest source but if you don't eat sugar it will just use another energy source. There is a lady called Dr nasha winters who I find her thoughts interesting. I think the best thing we can do is to eat healthy foods of the best quality we can afford, limit processed food, exercise and get enough sleep and try to remove stress from are life's which is easier said than done but the healthier you are I think you handle it better anyway. I'm also starting to look at all the other toxic stuff in my life like washing powder, dishwasher tablets etc but it's a minefield, plus I think you stress about it all to much its kind of counter productive. As for saunas I think they are good for you especially red light. I also read in the hospital waiting room about hyperbaric Chambers. I do cryotherapy when I can afford it as its meant to be good for you and I love it. Pre treatment I took a lot of supplements but was told to stop while having treatment and haven't got back into the habit of all of them yet. As for exercise I'm an advocate for weight lifting it has so many benefits. Also some cancer charitys have dieticians you can see for advice. I'm rambling. Sending hugs. Xx

Hello Ali

I had the most wonderful treating team, and after it was all over, nada.  The only advice I was given was to eat less fibre as I found it painful going to the loo for a long time afterwards.

Last year I had lung inflammation (I had secondaries and they always scan my lungs too) and I went to a local salt cave for ten sessions.  At my next visit the inflammation had shrunk a little (really good news, cancer doesn't shrink) but when I said what I had been doing I swear his eyebrows disappeared under his hair and he burst out laughing!  He had never heard of it, in spite of the fact that in some countries it is a recognised therapy.

I went back on all my supplements when my treatment ended.  My oncologist was really informative when I was told to stop them all and said good research is so limited but they do recognise that some can aid cell renewal which isn't what you want during cancer treatment.  That made sense to me.

But as far as helping myself in other areas, I have quite a few books and the cynic in me questions what I read.  I always check online for research (and it is important that this is independent medical papers with documented research on a good number and importantly not funded by the big pharma) and disappointingly there is very little advice.

If you find out anything please share - I will keep looking too!

Irene xx

Hi Irene 

Nice to know I'm not the only cynic. X

Yeah I hear you Irene75359  - I'm definitely not on the Hun for some magic snake oil - because let's face it - if only it was that easy.

Today's scrolling produced nada - there even seems to be inconclusive data on how fast or slow anal cancer forms tumors....  

I am definitely going to do the basics, diet focused on nutrition good sources of protein and fats, minimise the processed foods and limit the sweet stuff.  I'll build up my strength and increase my exercise.  I know sweating is meant to be a fundamental.... 

At some point I'd like to explore alternative therapies.... so a salt cave sounds very interesting...  

I'm going to start also finding some healthy recipes... so if you have any recommendations to share

Take care

Ali xx