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Starting Chemo on Monday . Worried and confused

Dennyc
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Hello I was diagnosed with oesophageal cancer a month ago. After all the usual, tests and scans I am starting ECX chemotherapy on Monday. I don't know how to describe how I feel. Since being diagnosed I have not felt any real emotion about it. I seem to be saying all "the right" things to everyone about having a positive attitude and taking it as it comes but I feel like it's just going through the motions. I had my pre assessment meeting on Friday, my biggest concern was the dosage of steroids. Before diagnosis I was doing well losing weight and to be honest I was more concerned at putting weight on than losing my hair. I don't think this is normal. My poor husband is devasted and really panicking about the treatment and surgery to follow. I am more worried about the effect this is having on him than on me. I am naturally very pragmatic but at the moment I really don't understand how I feel. My cancer team are wonderful and I have been given every piece of information I could need and very clear explanation of everything that is going to happen. I am glad there is somewhere like this which allows me to write this down and share. I am hoping there are other people that have felt like this and can assure me that this is just one of many reactions people can have. 

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    Hi Denny, welcome to the forum and sorry for why you find yourself here. I think the way you're feeling is much like most of us felt when first diagnosed with cancer - shock, shock that this has happened to you and even though cancer is quite prevalent, somewhere in our sub-conscious mind - "it won't happen to me". We all know that is wishful thinking because no one is exempt from getting cancer. I lost my Dad and my brother, as well as several friends to cancer; why would I think it wouldn't happen to me. Somewhere in the back of my mind, the truth of the matter is, I was high risk and I knew it, but it was still a shock when I did get diagnosed. I was well into denial. It took awhile to sink in and by that time, I was booked for surgery and it went from there - 6 years ago and I'm still here, but honestly, its' been a roller coaster ride and it will never be over for me.

    What you're feeling is quite common I think with most people. The thing that bothered me was how often people told me, "stay positive and you will do just fine". Well, that really grated on my nerves after awhile. I don't think a positive attitude ever cured cancer. Surgeries and treatments might, or at least keep you alive a lot longer. I did learn to let that go after awhile because unless one has had a cancer diagnosis, one has no idea how it feels. You will find people on this forum really know how it feels and they are very caring and supportive on here. You can say whatever you feel like, (other than profanity of course) and other forum buddies will understand.

    As for your husband, I think initially, a spouse or partner panics at the initial diagnosis. I hope he comes around soon so that he can be a support to you, rather than you having to take care of him. You will need all your strength to get through these next weeks and months of recovery and the emotional roller coaster you will be on for awhile.

    Come back on here and let us know how you are managing and also to just vent if you feel the need. I'm sure you will do fine, although it won't be a walk in the park as you know. I wish you the best with your treatments and I look forward to hearing from you in the near future.

    Take care and sending you hugs.

    Lorraine   

  • Offline in reply to LorraineD

    Thank you for responding, it has made me feel a bit better realising my non feeling is not abnormal. My husband is being very supportive, I think he is just worried and it's hard for me to let anyone look after me. I am sure all of us in this situation have had to "surrender" to allowing other people take control. I will use this forum and the knowledge and understanding other members can provide x x 

  • Offline in reply to Dennyc

    Hi Denny. :)
    I too experienced the whole 'numb' phase on my initial diagnosis and was more concerned about how my husband was going to cope with it all. It turns out I needn't have worried since my family have been a fantastic support to us both.
     

    I don't do being ill very well and hate the fuss as I'm very independent but hubby has learnt to just leave me alone when I get like that. Have to remind him every so often though and the steroids are a nightmare (I have the 'moonface' and weight gain) with my moods! Make me proper snappy! Poor hubby!

    I've just had cycle 5 of the chemo and I won't lie to you, it is a pig but so doable. I decided to shave my hair off as soon as it started to fall out (taking back that little bit of control felt good) and my baldness doesn't bother me. It is a bit chilly though. I bought a good kit to colour in my eyebrows too.They look quite good and not at all like catepillars.

    Never once through this have I had to 'surrender' to other people taking control. That would never have worked for me. Your care team encourage you to make any decisions regarding your treatment, keep you informed of what to expect next and the support network is fantastic! Both on here and at the end of a phone with the cancer care team. Just prepare for the fatigue! THAT's the toughest and very frustrating! It leaves me very cross with myself.

    I hope you have as much success with your treatment as I am having with mine and try to remember to eat well as it'll pay dividends for a fast recovery and minimise the damage the chemo causes. Good luck and sending oodles of hugs...... Joanne x
     

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    Hi Denny

    I think the most important thing you've said here was in passing - you said "and the surgery to follow"

    To me this means that they believe that your condition is operable - that they think they have a good chance of being able to cut it all out and leave you cancer free.

    If they thought that wasn't a possibility the'd just be giving you chemo to maintain it and kep it as inactive as possible.

    This isn't always the case - my neighbour had oesopagal cancer and they didn't wan to operate but after a long search they found a surgeon up for doing it and the operation was a success and they got it all.

    There are dozens of people on here who would give anything to have that same chance  - I know my wife was always on to her oncologist for a surgical option even though it was plainly impossible.

    Don't worry about weight (unless it's going to get in the way of surgery) don't worry about hair loss - don't worry about anything other than getting yourself to that operating theatre and presenting the surgeons with the best possible chance of a successful operation.

     When do they expect to do the surgery? 

    You will come back and tell us how it goes? - people love to hear stories of people who are winning 

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    Hi Denny,

    Welcome to the forum. I was diagnosed with Stage 4 Oesophageal cancer in October 2013 and my initial emotional/psychological reaction was very similar to yours. I wasn't in denial, but my feelings were pretty much numbed. Looking back, I think that was my minds way of coping and it helped me get through my treatment and the upheaval caused to my life.

    You may need to alter your mind set now. The fact that you were losing weight wasn't a good thing, it was the main symptom of your cancer.

    I was on EOX (a similar regime to ECX) and I found it helped to keep a daily diary of my weight, I tried to keep my weight within a range I was happy with.

    Despite the steroids, my problem was to avoid losing too much as the chemo massively suppressed my appetite and also temporarily altered my taste buds making most food (and drinks) taste pretty horrible!

    On the plus side, when on chemo (with steroids) I went from being overweight to having a healthy BMI ... and the chemo shrank both my primary and secondaries - so a good all round result.

    Good luck with the chemo!
    Dave

  • Offline in reply to LorraineD

    Hi Lorraine,

    I agree that a positive attitude has never cured cancer, but I think it does help keep despair at bay. In turn this makes it more likely that an individual will make positive decisions about whether or not to have treatment. Outcomes can't be guaranteed but, like the lottery, you've got to be in the game to win it.

    Besides, I find that life is a drag without a positive attitude for me and everyone around me lol :-)

    Cheers
    Dave

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