Starting treatment soon

Hi 

I have been diagnosis recently with lower oesophageal cancer and it’s spread to my lungs.
I’ve had a telephone appointment today to discuss treatment and I’m now even more deflated and confused than I was before. I didn’t get to ask most of the questions I wanted to, mainly because when i asked what I would get out of having the treatment I was basically told it would prolong life for a few months!! This is not what I was told when first diagnosed. I was sort of positive before this appointment now I’m wondering what’s the point in anything anymore. I can still eat pretty normally just get full quicker so I eat little and often. 
I just don’t know what to do.  

  • Hello Debbielou

    I am sorry to read that the consultation has not gone as you had hoped it would, and with the response that you received I can understand why you feel deflated, but I really feel that it is important that you get the answers to the questions that you have. 

    Ok, so the treatment that you receive is designed to prolong your life, I am not sure about the few months, but I can say from my husbands experience that his life continues to be prolonged.  Everyone is different, and in truth it is hard even for the professionals who see this every single day to give glowing reports of treatment being the cure-all that we all want it to be. 

    My husband was also diagnosed initially with OC, including mets in his lungs, liver and lymph nodes, without treatment he was given 4 months, with treatment, he was told 1 year, we are now on month 17 and he is doing very well. Yes he still has treatment, yes he sometimes get tired, but mainly for him at least things have been very positive with regards to treatment and I believe that is because he never listened to prognosis, he focused on the positive, on the living and on the getting better... I have already said, everyone is different, I know treatment reacts differently and that is also determined by the viciousness of cancer cells, and how well the treatment reacts with them, but it has to be worth a fight. 

    If you are ok in yourself, other than having to eat smaller meals, contact you oncologist and ask for another discussion, ask your questions .. you have every right to the answers that you need. Remember the cancer specialists want the best for you!

    Initially my husbands oncologist was very blunt, made it very clear that this is not a cure, that it is just about making him comfortable, for as long as possible... I truly thought that I would be widowed by the end of 2020... everyday is a blessing and life to me, is worth fighting for, everyday. 

    Please ask your questions, find out what treatment, when, where , how often, and then decide what is best for you, and above all focus on beating this, focus on living Hugging

    Good Luck

    Lowe'

    Call the helpline for free on 08088080000, 8am to 8pm everyday.
    Tomorrow is not promised but it always has potential. Aim for your potential!
  • Thankyou for you’re encouraging words! I have given my head a wobble this morning and after speaking to my Macmillan nurse I feel like I’m a little bit back on track. I am not going to let this awful disease define who I am so positive thoughts only from now on. ( or until my next wobble).

    The main thing that bothered me was that at my first consultation it was all positive but after speaking to the oncologist yesterday I felt like the wind had been knocked out of me. It was a very clinical conversation and I was on my own at the time of the call which didn’t help.

    I have asked to speak to the oncologist again and this time I will not be sidetracked and will ask all the questions I need to ask!!

  • Glad to hear that!

    My husband was the same, initially told that they had caught the OC in time, then a week later told that it had spread to liver and lungs and then when speaking to the oncologist the next day, the lymph nodes. incurable but treatable. 

    We started to focus on using food high in anti-oxidants in all meals, we add Green Super Powder to smoothies, and meals , we use raisons for potassium intake and incorporate Chakra healing, meditation and sound bath therapies, as part of our own healing focus.  Each to their own, and I hope you find the right healing path for you. 

    Keep me updated if you don't mind, I wish you a successful journey.

    Lowe'

    Call the helpline for free on 08088080000, 8am to 8pm everyday.
    Tomorrow is not promised but it always has potential. Aim for your potential!
  • Hi

    I now have a start date for treatment 2nd of November and a face to face appointment where I can ask everything I didn’t before. 
    Could I ask you wether I start follow the antioxidant diet now and during or after?

    I also have another endoscope tomorrow as they still don’t have enough cancerous tissue as there is a lot of enflamed tissue. I hoping that this is good news as it means the tumour isn’t as big as they first thought. 

    I will do my best to keep you updated 

    much love 

  • Good to hear that a treatment plan is in place and due to start November 2nd,  and although this is still scary in it's own way, it is a focal point, a potentially positive move forward, especially as you get to ask the questions you need answers too. remember to record anything else that you might think of in between times, recording on your phone if need be if you are out and about.

    We use antioxidant foods all the time now, all meals if possible, we did our own research and I even got my hubby eating foods he had previously disliked. The antioxidants are such an important part of healing, and I imagine that you already consume a fair amount of these foods without realising it as we did, we just added to it to ensure we focused on the food Dal could eat, to ensure that it was good for his system and would possibly help in some way. 

    Good luck with the endoscope, it really looks like things are moving in the right direction and if their findings do mean that it is not as bad as first thought there may be alternative treatments / surgery available to you. 

    I look forward to reading more of your journey and send you love and healing light 

    Lowe'

    Call the helpline for free on 08088080000, 8am to 8pm everyday.
    Tomorrow is not promised but it always has potential. Aim for your potential!
  • my husband starts his flot chemo on the 3rd nov 4 rounds just wondering what side effects people are having then after that the operation 

  • In my case had little in the way of side effects from the first session, 2nd,  and 3rd swings between diahorrea and constipation.   Worst for me was in the throat where I produce a lot of saliver a change in taste and a metallic sensation on the tongue.  Pins and needles in the fingers when touching cold items.  I think it depends very much on the person as we all react in different ways.  Mood changes was another symptoms which upset my partner but I just keep focusing that it is the chemo causing all this and it does ease as time passes.

  • Lowe

    Very interested in anti oxident foods. Did you have a list or a book. There is so much info out there, it is confusing and a lot of it is just sales talk. A link would be great. 

    John 

  • Hi John

    This link may help 

    From our perspective, it is not sales talk, Dal has been on higher levels of anti-oxidant foods since his diagnosis, brought about by one of his closest friends sending a hamper of goodies instead of flowers Bouquet, we then done our own investigations and started adding different foods to our daily diet. 

    Let me know what you think once you have done your own research

    Lowe'

    Call the helpline for free on 08088080000, 8am to 8pm everyday.
    Tomorrow is not promised but it always has potential. Aim for your potential!