Journeying Again (AKA 12 Months On)

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Hi one and all

Been a while and lots of water has flowed under the bridge.  Glad to say that hubby is still with us and on the Clinical Immunotherapy Trial.  Only had two infusions to date (given at three weekly intervals), together with daily capsules taken at home - which could be a certain drug or placebo.  To date the only side effect has been the normal tiredness that accompanies any chemotherapy drug.  We are learning another new set  of procedures, language and people.  Next Friday (19th) is the first big hurdle in terms of a full round of Scans with contrast.   Although we know it is too early for it to be having any major effect it is still important to find out if any other tumours have appeared anywhere.

The one thing that we have learnt about being on this particular trial is the time commitment required for checks, scans, questionnaires etc. that perhaps we underestimated.  Still at the moment it is the best option for us. 

The bucket list is being worked on, but only the things that can be accomplished from home, but everyone is in the same boat regarding that.  Does anyone have any experience regarding publishing / self-publishing a book?  Hubby is getting towards the end of book and will be looking for publishers in the next month or so.

Love to All and Stay Safe

Margaret

  • Hi Margaret 

    Good to hear from you and  positive news as well everything thjng  x for next round of scans and  look forward to your update 

    . I know you can self publish on Amazon kindle but don’t know much about it sorry. 
    Hazel xx

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now  6 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help

    2 videos I’ve been involved with raising awareness of HNC and HPV cancers 

    https://www.instagram.com/merckhealthcare/reel/DBs8Y0niJ8N/

  • Hi Margaret. It all sounds promising but as you say you won’t know anything till scan results are in. Bless you for putting in the time and effort to be trail blazers even though your choice in the matter is out of your hands. I think you are doing a sterling job fighting your husbands corner. I am full of admiration. 
    Sorry can’t help with the book but I wish you both all the best with it. 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I BLOGGED MY TREATMENT 

    Macmillan Support Line -  0808 808 00 00 7 days a week between 8am-8pm

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  • I do have experience. This means what is usually called vanity publishers. You have to pay upfront for them to  publish your book. They will then put it on amazon and other sites. Dont expect to sell many unless it is something really interesting. It is mainly for family and friends. If you dont need editing then I suppose one can go for the cheapest. Otherwise one has to pay quite a lot. I had the bad experience of my publisher going bankrupt so I lost my money and the books. They usually print in a cheap place not in the UK and give you about twenty of them. Dont believe when they say they can sell them to W H Smith or other open shops they cant. If you want them sold you yourself will have to go round the shops. Most book shops even the very large chains do have a person there who is authorised to buy books but you will have a hard job getting him to doing it. There are different ways to publish either like one at a time when needed or a large amount. Books can be very dear if published one at a time when needed. My books at the time I was told costed one pound to be printed and were sold at five pounds. I have no idea what it is today. 

  • Thanks for info Seeker1 useful to know pitfalls to avoid. I will pass details on to hubby.

    BrandyGirl
  • Lovely to hear from you Margaret and that your husband is doing ok, yes i can quite imagine it is a bit more involved when doing trials as i suppose they have to record quite a few details and observations at different periods, well done to your husband in partaking in the trials and you supporting and helping him along the way. Sorry, i cannot help with the book but i wish you both good luck in getting the book published. Best wishes,

                                                  Chris xx                        

    Its sometimes not easy but its worth it ! 

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  • Hi Margaret

    Really hope the scans go well next week.

    A book - how exciting! 

    Take care and all the best in everything.

    Linda x