Friday, 30 October 2009

An uphill struggle

What follows is a rant and I do apologise. I feel so low today. I went to see an ear, nose & throat specialist yesterday. My ENT appointment for December was brought forward so that I saw a consultant in some special unit of the hospital but I still don’t know the relationship between this unit and the general ENT dept. I am in a Catch 22 situation. He told me that, as a result of the chemo I have been having and a lowered immune system, I have a nasal infection, chronic rhinitis/allergy. I also have a non-malignant cyst and polyps. I can’t have the transplant with an existing infection but they won’t/can’t clear up the infection until I see another specialist. I have had these symptoms for ten months now but it has never been taken seriously before.

I am due to have my PET scan on Monday to see if I am in remission for the transplant but this does not give the ear, nose and throat guy enough information; a CT scan of the head is needed for that. To have that too soon after a PET scan would mean I would be given too much radiation. I need to have a CT scan so that they can determine whether to give me antibiotics or whether an operation is needed to open up the sinuses.

So here I am – no antibiotics and with the knowledge that an operation at this stage is the last thing I want. Then – the ultimate. The ENT guy told me he would WRITE to my GP and the Consultant who runs the Bone Marrow Transplant Clinic. For those of you reading this but not living in Britain you will not understand we are in the middle of a postal strike! I asked if he would telephone them but he preferred to write, so I gave him the Consultant’s fax number and I tried to explain the urgency of this if we are to meet the December 6th deadline.

Now my greatest fear is not that I won’t be in remission, but that perhaps I am but I can’t go ahead with the transplant because of a nasal infection! Over the weekend as a family we are going to try to think of things we can do to alleviate some of the problems, nasal washes, vitamin C, cutting out dairy produce etc. We are also going to try to evolve some strategy to get the professionals talking to each other. I was so high at the prospect that at long last the transplant would be going ahead and now I feel so powerless. There - I’ve got it out of my system so we can go for a walk, face carefully covered of course, in case I am allergic to trees! Anyone who’s got any ideas please post a comment.


  1. You have every right to rant but it cannot be good for you.

    There is a good article on the front page of the Telegraph today. This concerns a heart condition passed on by an AI donor. You can read it on line, as well.

    With regard to your infuriating medical conditions, have you considered alternative therapies? I was a sceptic until a good friend who is a holistic practitioner helped me at a particularly stressful time. Massage and reflexology engendered a more tranquil state of mind and helped clear up the eczema that kept appearing. Ear candling relieved bad headaches. I persuaded a colleague with chronic sinus problems to try this and that is what she now does.

    Even some doctors acknowledge that alternative medicine has its place; ie peppermint oil and fennel tea are better for Irritable Bowel Syndrome than so-called conventional medicine. However, there are many "snake oil merchants" about; best to ask around for someone who is known to be genuine.

    All the best.

    Of course, there is camomile tea for sleep.

  2. Thanks so much for your comments. I am going dairy-free and gluten-free this weekend, possibly longer and I'm inhaling steam etc. I've also got hold of some manuka honey but I am going to look on-line.

    I'm just about to look at that Telegraph article on-line about the heart condition passed on.

    I needed to get my feelings out in the open and once they are I feel better as I don't want to be bottled up or difficult with the family but I do welcome your understanding.

  3. I have vegan friends who are sinus sufferers and they told me that they have benefited greatly from giving up dairy produce. However, be sure to compensate for the calcium you will be missing out on!

    The Telegraph article is "Sperm donor passed ailment to nine children" and the ailment in question is hypertrophic cardiomyopathy.

    Rob Buckman is now an oncologist, which after reading your story, I find rather ironic.