New Beginning

Hi all, my story hopefully not to boring but an insight, I am 11 months post op from an esophagectomy operation, we take life for granted a lot of the time until something goes wrong with our health, I was 3 stone overweight for years and living with a large hiatus hernia, I ate what I wanted and when I wanted with no real discipline, until one day I felt a twinge in my throat when I swallowed which gradually got worse, I thought it must be an ulcer, a visit to the doctor resulted in a supply of lanzopral tablets and a revisit if things didn't improve within 10 days, no improvement, a revisit to a different doctor, who arranged an endoscopy three weeks later,at Queen Alexandra Hospital Portsmouth, Oct 2011, they discovered a large tumour in my gullet, I have to admit it was a shock, they showed me a picture of the tumour, my wife and I were asked to spend a while to discuss the outcome with the team, and what would follow, from that moment my feet never touched the ground, Ct scans, PET scans, a visit to surgeon who confirmed it was operable,oncology specialist, to discuss forward chemo with a pic line treatment, a short operation to insert a tube in my intestine and a stretch of the gullet to enable swallowing being easier, I was advised to gain/,maintain weight and exercise which I duly did, the the medical team were fantastic, from the oncology specialist, UGI specialist nurse, surgeons, who explained in great detail what the stages were, Chemo 10 weeks had no severe side effects ,apart from hair loss, the only niggle was the pump which I had to carry everywhere, connected to the pic line, I purchased a small camera bag which I attached to my belt, the day of the operation crept slowly toward me, until finally one early Monday morning 6.30 am, I went in for pre op, set up and escorted to the theatre by the UGI nurse and my wife, I had switched off mentally and accepted the next stages and handed my self mentally and physically to the team, I happen to be a Bee-keeper and the anaesthetist was also a Bee-keeper which we discovered during the banter, whilst being given an epidural (recommended), 10 hours later being wheeled to ITC blurred faces coming into focus, no pain but breathing and shortness of breathe,

1 day in ITC then a day in high care, then on the ward, for eight days, no pain, the control was brilliant, the only discomfort was the visit by the physiotherapist , a very important part of recovery, by day 10 I walked from the hospital. The pathology report came back that the chemo had knocked the tumour out completely and there was no trace of cells elsewhere.

I am now eating better after losing my appetite initially and slowly gaining weight, weight loss 5 stone from sixteen half stone, now 12 stone 3lb, stamina increasing, Beekeeping maintained, appetite increasing ( savoury preferred, Bovril a favourite) sugary things give me an uncomfortable tummy. Still taking lanzopral. To close this blog, (did I hear a sigh of relief ) I am now setting up a support group for the hospital with the help of the OPA, and the medical team at their suggestion, I will never take life for granted again and live every day as a New Beginning, cancer hates positive thought. Good luck to all the patients and I am happy to exchange emails with any one who wants some support.

Mike

20 Replies

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  • Congratulations Mike on such a positive attitude to all you have been through. Keep on getting better day by day and enjoy each new beginning daily :-)

    I am sure your honey is helping too, I have just found a local bee keeper and am getting lots of lovely honey as I find the only drinks I enjoy now are elderflower and hot lemon and honey.

    I am two and half years post op and can say without doubt it does get better:-)

    Best wishes

    Edwina x

  • Hi Edwina

    Thank you for your quick reply, its great to hear from you, I find bee-keeping very therapeutic, I am the chairman of Portsmouth Beekeepers association and as you are an avid honey eater, look up the BBKA web site you will find it interesting, its good to have an interest to help in the recovery process, rather than sit and watch TV, I am now 69, I go skating, regaining some of my youth, for fitness and still run a loft conversion business, which keeps my mind focused, I now want to learn a musical instrument ,and would love to ride a horse again, maybe this year.

    Mike xx

  • Hi Mike

    It was nice to read your positive blog. It's really the best way to deal with what you have been through. sometimes its difficult and we all have our up's and down's but thats true of life it's self. Keep your chin up.

    Kind regards

    Steve

  • Thank you Steve, as I said to my daughter, the other day climbing the mountain is hard, but once you reach the summit, and look out over a new life, the climb was worth it.

    Mike

  • Hi Mike

    So glad you are doing well after the operation.I had mine over six years ago and am back to doing everthing I did before,cycling weight training fell walking and swimming.It takes about 18 months to 2 years to regain full fitness but you eventually get there. You always have problems with eating and sleeping but thats because sometimes we eat to much and to quickly and when sleepng slip down the pillow but thats a small price to pay for generally good health you seem to be a very positive person and will be an asset to the OPA.

    All the best to you.

    Phil

  • Thank you Phil, like you I get an ache in my tummy after eating sometimes, but after about 30 mins it goes, sweet things tend to be the worse.

    Mike

  • Hi Mike,

    Im 3 years post treatment it has been a long journey but it is so worth while now. Mind you 2 years ago I was not convinced it seemed to be an agonisingly slow haul to recovery, But now I can do most things I did before, My Chemo brain is slowly clearing and I have learnt to deal with the fatigue and balance my life. As Phil says I occasionally eat too much and suffer, but then I used to occasionally drink to much and have a hangover so it's not really any different. I am still improving day by day.

    Really pleased you are doing well, Have fun

    Cheers

    Liz

  • Hi Liz, every day is new, I appreciate the things I used to take for granted, it focuses the mind, also its a kind of club every person I have spoken to has someone touched by cancer, a friend, relation, colleague, it just shows how many people are travelling this road and gives you a feeling of deep empathy.

    Mike

  • Hi Mike,

    All our journeys are similar but slightly different, all important but a lot is learnt from other peoples experiences.I found focusing on a hobby or project took my mind away from all the new issues in life. so good luck with the bee keeping. I am now coming up to19yrs post op. Good luck

    Sally

  • Thanks for this very encouraging post. My husband is 4 weeks post op, doing very well overall but the loss of appetite is making eating a trial. Do any of you have any tips in relation to regaining appetite? He has to have 9 weeks of post op chemo so it would be good to build him up as much as possible before that begins.

    Thanks

    Chris

  • Hi Chris

    After my op, the loss of appetite was very hard going, your taste buds are all over the place, my daughter gave me a good book, The Cancer Fighting Kitchen written by Rebecca Katz with Matt Edelsona cancer patient , coping with diet,called FASS Fat Acid Salt Sweet. Fat ( Olive Oil ) Acid ( Lemon) Salt (Sea Salt) Sweet(Maple Syrup) I found post op, Bovril was a drink which I found very comfortinga strong taste. , Maple syrup I use it on my porridge, Lots of menus and tips

    Strong tastes will help. I have lots of butter on baked potatoes, his appetite will gradually come back

    Mike

  • Thanks for the encouragement Mike.

    Best wishes

    Chris

  • In those early days after my op i found mashed potatoes and fish fingers along with soup my staple diet.It is so easy to have too large a portion and have discomfort.Good luck and dont forget tiny steps achieve most in the long run.

    Gray

  • Gray,

    Thanks for this. Little steps it is but I'm having trouble persuading him that this is normal for someone who had this operation. Still with the 6 nations coming up he won't move from the tv so it will be easier

    Best wishes

    Chris

  • I had the olympics and then the para-olympics at that stage in my recovery,do still need to keep active if possible , i took 2 ten minute walks every day .I really think it boosted my mood and apetite,

  • my husband in exactly same position i.e. fastened to chair watching 6 nations! he is also 4 weeks post op and has problems with eating, he also has another bout of chemo looming and has no energy at this stage. ps hope Wales win on the weekend!

  • John is a Welshmen so we have that in common too. Hope all goes well for you and your husband. We have had an awful few weeks but hope we have turned a bit of a corner now. Time will tell. Love Chris

  • Hi Chris,

    I did post op chemo and basically if you fancy it eat it but don't push to eat too much as you will go backwards. lots of tiny little meals or snacks are so much better than a meal, I would eat a small amount of veg maybe with cheese on top or a creamy sauce, then some potatoes maybe lyonaise or with a sauce then maybe some mince but just lots of little meals (half a tea plate) but with lots of cream sauces or cheese Philidelphia full fat makes a nice sauce but make sure its not too rich!!! custard with creme fresh islands forget about healthy eating for a while just eat what he fancies and small amounts, use real butter full fat yoghhurt etc, toast rather than bread it is easier to swallow, i ate loads of dariylea triangles for a while and tastes change something taste awful one week and much nicer the next, my rule was if it had no calories i wouldn't eat it as it took up too much room and effort to make it worth while.

    Good Luck

    Liz

  • Liz

    Many thanks.

    Chris

  • Taste buds are funny things. They do get mucked about during treatment, and sometimes get restored after many months.

    If you are maintaining your new weight, that is a good thing, but do not try and regain your old weight because in itself, weight is not the real measure of how well you are doing, despite what some of the non-specialist dieticians will say at times.

    Refined sugar (including icing on cakes) will be a real no-go area for many of us. As it goes through your digestion system, it will send a very loud signal for loads of insulin to be released, and this will cause no end of trouble (see dumping syndrome).

    Thanks for your effort in setting up the support group - they are really helpful.

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