Hi Crystal

I have just joined the site and read your message, thank you for your courage and spirit. I too am recovering from this cancer and not knowing about forums like this have already started a blog to help others.  My motive is to show what having this dreadful cancer is like and to give people a day-to-day reality of what they can expect.  My blog takes the form of a diary, starting just over a year ago and takes people through the experience, warts and all. I hold nothing back, but have tried to inject humour were I can and give others practical advice and support. Please have a look and tell me what you think. As another who has gone through this I would really welcome your thoughts and suggestions (and any others who may have a look). I can be found at: http://innesart.blogspot.com/

I hope this is ok to mention it here, if not please forgive me I am new to this. I too am positive and greatfull that I could have the surgery.  If anyone does not know of them then can I recommend as well the Oesophageal Patients Association. Tel: 0121 704 9860 they have been marvelous to me

Bryan

Hi Sheena

Thank you for your reply; it's good to know what to expect as my husband keeps telling me that the RT was going to be a breeze compared to the chemo.  I'll let him know what Kenny's experience was so that he'll understand what he might be feeling like at the end of the treatment as he is keen to book a week away and I am trying to manage his expectations....... (I am always playing the bad guy at the moment!)

All the best to you both

Mandy x

Hello Crystal and All,

Read quite a few of your very informative postings Crystal, and sensitive replies to many folk out there (in here).

Apologies for not posting this on the right forum, but I saw in your post Crystal on July 12th you mentioned "trial".

One thing I am tossing around in my head is the possibility of going on a trial.  I have tried to find out more information from various places, but would also like to know from people on this site about the pros and cons of having treatment via a trial.

Many thanx for anyones opinions and experiences.

There should be a full moon out there, but alas, the clouds have set in. Next time.

Best wishes, night-night, Jill.

Hi Bryan

Thanks for your kind words and for linking your blog.  I’m so glad to hear that you’re recovering well since your surgery and it’s always good to hear from others who’ve been through the same.  I’m all for sharing info and knowledge about oesophageal cancer as many patients will identify with some of these personal experiences, although as you point out, each journey is a unique and individual one.  It’s also helpful for the newly diagnosed to understand how the process works from diagnostic tests through to results and subsequent treatment, and helps to give an indicator as to what to expect, albeit, each individual journey can be experienced in a totally different way. 

My only slight concern is where statistics are mentioned on the internet in general, not because they are not true, but because it’s always been my belief that these numbers are not static but are increasingly changing for the better.  Plus, it’s important to realise that many stats are drawn from samples between two and five years old, which is the amount of time taken to collect the data, collate the information and then to disseminate it.  In that time, medicine and treatments have improved and continue to do so.  My own team never talked in terms of statistics, mainly because there are too many variables, but more than likely because I would not listen anyway lol. 

I and many here would completely agree with you that the OPA is a very highly regarded organisation, which has provided a lifeline to many and been the source of exceptional information and caring, as has this site too.

Anyway Bryan, it’s very nice of you to drop by and I hope you’ll continue blogging because not only is it therapeutic to you, but will also provide hope and encouragement to others. 

Keep in touch.

Love

Crystal xx

Hi Jill

Thanks for your kind comments and yes, you have posted in the right place here on this thread or within the oesophageal cancer group, although you could post anywhere really and someone would respond.

As it’s still early days for you in terms of diagnostic tests and waiting for results, it might be a little early thinking in terms of clinical trials.  The best thing for you to do is to try to take one step at a time, keeping focussed upon the forthcoming treatment and remaining as positive as you can, given the circumstances.  Your team will do their very best to determine the very best treatment plan for you, which will be based upon a number of factors, such as the Stage of the cancer, whether it has spread and your current general health.  There will be specific treatments, which hopefully will be very effective in terms of either striving to cure or to control the illness.  Anyway, although I think you should wait until you have all the results of your tests, here is a little bit about trials:

As you’re probably aware from reading my profile (click on photo), I don’t have any personal experience of trials, but have spoken to people that have been on previous ones, which were testing different drugs or scenarios.  I think one of the main problems for many people is the thought of the double blind trial, where one group is allocated the test drug and another group the placebo, thereby creating an objective study environment, but at the same time leaving the patients unaware of their particular treatment – many hoping that they are receiving the trial drug and that it will prove effective.

The only trials that I can think of right now and might still be recruiting are the COG trial and the Scope 1 trial.  You would need to ask your consultants as to which trials are ongoing and recruiting.  Below is a current list of trials, although not all would be appropriate.

NHS Evidence:

http://www.evidence.nhs.uk/search?q=esophageal%20cancer&om=%5B%7B%22itn%22%3A%5B%22%20ongoing%20trials%20%22%5D%7D%2C%7B%22men%22%3A%5B%22%20cisplatin%20%22%5D%7D%5D

I do hope all goes well for you Jill, I’ll be keeping fingers crossed, so do come back and let us know how you get on, but we’re here anyway should you need to ask questions or talk things through.

I too love to stargaze and look at the moon in its different aspects.  We have a very small telescope which is fun, and there is also a lovely App which pinpoints the night sky above where you are located, and reads out all the stars and constellations overhead in real time.  I’ve always been interested in astronomy, black holes and so on, just out of interest rather than academically or professionally.  Enjoy the moon, but as you say, it’s a bit damp and cloudy to get visibility right now.

Love

Crystal xx

Many, many thanks Wealth-of-Information Crystal.

For now,

best wishes, Jill

Hi Crystal

Thanks so much for your thoughtful reply and I have taken on board the comments about statistics, and will put something in my blog on it.  I guess with my case I was given such a firm statement by the consultant (1 in 3 chance of survival) that it, understandably coloured my view of statistics (smile).

I appreciate being able to talk to all on this forum, and get feedback, it helps me have a broader view, as I only have my personal experience to go by.

How are you doing these days? it's early days for me but still suffering the horrible dumping, but one of the worse for me is tinitus and being dizzy, which I don't see mentioned much, also went to the doctor last week and now got a hernia on the site of my 'big' scar, he said to see how it goes as doesn't want me to go in for another operation so soon, but it is giving me a bit of trouble so going to talk to my chemo nurse next week and see what she says.

Bryan xx

Hi Crystal

Sorry for late reply, v busy despite being on the 6 wk summrt break.  See your friend in Costa sometimes.  Hope u going ok with the move.  We doing well husband working 2 full days a week in York.. Both joined gym at Dome and soon be cruise and renewal of vows time.  Hvae enjoyed the company of beautiful grandaughter Summer-Rose lately, having her stay with us 4 days was fab - didnt want to let her parents have her back lol, she is 16 months old now and amazing <3..   Husb has appt with the thin man in Oct so hope all well there, have taken on board what u sain about Mr Js policy over scans.  Husb still bad days but more good ones now and almost yr since op - where has the time gone.  He suffers dumping sometimes and tinitus!  Still reflux fairly often and sometimes sickness, still sleeping semi upright too.  But all in all is doing v well.  

Hoping u are in good health and much love and hugs to you and the family - likewise averyone on here touched by this evil disease.

xxxxxxxxxxxxx

Hi Crystal,

I just wanted to say thank you for the book recommendations - we've received them all and Mom is ploughing her way through them now!

Dad has been amazing, he's still able to eat at the moment and has totally changed his diet.  He even drinks green tea (bleeuugh!). I cooked him a soya meal last night (I thought he would simply refuse but he wolfed it down).

Should hear from the surgeon on Dad's treatment plan today. Please keep everything crossed for us.

Sending loads of love to you. You are the most positive, helpful person I have met so far and I'm so glad that there are people here like you to help us. xxxx

Hello Crystal - since joining this community many people have suggested to me I read your blog - which I have done and can understand why they suggest it.

The information and stats out there re OC are truly horrible and after my partner was diagnosed last week I felt there was no hope for him - but I now realise there is so much hope and as one of you lovely people said - he is a statistic of one with every chance of fighting this. We get our staging results and treatment plan next week and with every fibre of my being I am hoping for some good news - a chance to fight this awful awful disease.

Your positive story is so enlifting and inspiring - this is the sort of thing we need to hear - we can all frighten ourselves silly with the negative stuff - but you prove there is another side and the more I read the more I see you are not the only one.

Thank you for your words and your caring and for making me feel I canlook forward with feelings other than fear and trepidation.

Be well

Lyn x