Nosebag

2 minute read time.

So, the six weeks of chemotherapy and daily radiotherapy was completed yesterday! It did not quite all go according to plan though. The second dose of chemo was delayed for a week due to a low white blood cell count and my naively optimistic attempt to get through it all without a feeding tube did not quite work out. In fact I was admitted to hospital last Tuesday because I just could not keep any fluid or nutrition in me and had lost about 9-10 kilos. A nasogastric feeding tube was fitted, which was much easier than I had feared. To be honest, it would be impossible to get by by without it at this stage and it is a godsend (even if it doesn't look too stylish ....)

Having been "pump trained", I was released on Friday morning after my last radio and now hook myself up to a pump every night which gradually provides liquid food to the stomach through the "nosetube" overnight. Hydration, medication and nutrition top-ups during the day via a syringe and the same route! More convenient even than McDonalds .... As long as there are no power cuts, that is.

The skin on the left side of the neck is peeling off as a result of the radiation, so I am slapping on some very heavy duty cream (more reminiscent of railway grease than medication but hey, if it works...) 

All in all, I am told this is pretty average stuff for the treatment I have undergone. I am also told that the nature of the treatment is such that it will take 10-14 days now before I start to actually feel better. But the treatment is done and I must say I feel very pleased and relieved about that.  Now on to the recovery phase! 

Just to close on the point I started with, and directed more at those who have undergone or who are undergoing this (hang on in there, it is very tough but do-able), I am now more convinced than ever that my inability to keep down fluids and nutrition was not a result of chemotherapy or the pain of internal burns from radiotherapy etc, but of the mucositis which arises as a result of the radiotherapy. Sorry for the gory details, but the huge amounts of mucus produced by the internal burns literally made me sick and I wonder whether anyone else has had the same experience? In which case the battery of medication which was thrown at us might be largely useless and irrelevant. I was constantly asked by staff whether I was in pain and why I wasn't taking more medication against it and whether I felt sick and why I didn't want medication against this too. (I did not feel nauseous though:  the vomiting was sudden and spasmodic.) More helpful would probably be low level laser therapy to assist healing in the throat and mouth and this is precisely why it is offered in the Jules Bordet Cancer Institute in Brussels for example http://www.bordet.be/en/infosmed/brochur_e/diverse/mucosit.htm . It is not available in the UK, except at Southampton NHS Trust but only as part of a trial. Shame, I think.

Anonymous
  • FormerMember
    FormerMember

    Ah, the good old nasogastric tube ... I remember that well ! Twice I had the 'pleasure' with the installation of that particular gadget - once after my surgery and then, like yourself, at the end of my RT. Even water was like trying to drink battery acid then due to the excruciatingly painful mucositis and radiation burns ... they told me that I was unlucky to suffer from particularly bad side effects, sigh.

    I also fed mainly overnight as it took hours for that huge bottle of Jevity to go down ... my feed pump sort-of 'moo-ed' gently as it worked, so was quite soothing in a strange way. Oh, if I'm remembering rightly my pump was a Patrol brand one and I think they have back-up batteries - the hospital one certainly did.

    The thick saliva / mucus can be distressing and I found that the recommended bicarbonate of soda rinses helped cleanse my mouth ... salt rinses can be good too, worth a try.

    It is a long-haul getting through but can be done ... wishing you all the best and a good recovery x

    Joycee x

  • FormerMember
    FormerMember

    I am just about to start same trearment for throat, starts 21st July. I don't have many worries about having treatment or side affects - as yet!. I am more worried about how to financially get threw this period which is constantly on my mind! How did you manage if you don't mind me asking? Did you find any help to ease the burden.

  • FormerMember
    FormerMember

    Hello Fishermans friend. I'm sorry that you are about to start treatments and for help / support do join us in the Head and Neck cancer group. Click here and join group ...

    Regarding any financial worries then do give the free Macmillan Support line as call tomorrow ( the number is at the top right of the page ) and speak to one of the financial advisors who can help guide you through. Take care x

    Joycee x

  • Fisherman's Friend: I can't give any advice on financial issues I'm afraid but Joycee's advice sounds very good. I saw lots of leaflets from Macmillan on this. Good luck with everything!

  • FormerMember
    FormerMember

    sorry to thetreatment has beenso hard but glad equallythat it is over and i wish you a speedy recovery x