Monday, 11 June 2012

Where did that week go?

Well the Jubilee weekend came and went so quickly. I enjoyed all the coverage on the TV but some of those ancient pop stars really should hang up their guitars now don’t you think? Jon, Gaby and Ethan spent the weekend with us so I was a happy bunny. The weather was so miserable we didn’t get out much which was a shame.

My brother and his partner came to visit this weekend. We had a good lunch in The Goods Shed in Canterbury. Well worth a visit.

Health wise I have not been feeling too wonderful. The breathlessness is getting worse and is now slowing me down no end. The fluid in my lung is pressing down on my diaphragm and stomach which is also making eating a bit of a chore too. I now eat little and often which helps to keep the nausea at bay but thankfully I am maintaining body weight which is important.

I had an appointment this morning with my oncologist at Canterbury Hospital. She was in agreement with the advice given from St Barts to have a break in treatment. In this respect they are singing from the same hymn sheet but I still cannot see how doing nothing while the beast continues to grow is a sensible option. Am I alone in feeling this way? Does it make sense to anyone else? My oncologist was not familiar with the chemo regime suggested by St Barts (not surprising as it was not conventional treatment for mesothelioma) but we have since given the details to her secretary – she wants to investigate it further and see if funding would be available for having this treatment locally rather than having to travel to London. I left it that I would see my oncologist again in 4 weeks time. She is happy to prescribe Pemetrexed / Carboplatin chemo if that is my choice and meanwhile she is going to get the thoracic surgical team to look at my latest scan to see if they can suggest anything to help with the breathing problem. A permanent chest drain was mentioned. She pointed out that so far my scan has been assessed by 3 well qualified thoracic oncologists but not a thoracic surgeon. So we play the waiting game once more. Patience is not one of my strong points!

Meanwhile I have my final session of ‘breathlessness management’ this week and another reflexology session.

Sadly fellow mesowarrior Norman Fletcher passed away last week. He fought every step of the way and was a true inspiration to others experiencing this vile disease. R.I.P Norman.

Tess x


  1. Oh Tess - I'm so sorry to hear about your friend Norman.My thoughts are with you and his family.
    I suppose the thinking on having a break from treatment is to give your body a time to recover from the battering the chemo gives you but I can see how in some ways doing nothing makes no sense.
    It's good that you are managing to maintain your weight as you will stay stronger ith that on your side. A chest drain sounds good. Hope they decide one way or the other about that p.d.q.
    Love and hugs
    Beryl xx

  2. Sorry to hear about Norman Tess, specially prayers for him and his family. It must be so hard absorbing all this information and making these treatment decisions. I can see that you want to be battling all the time not giving the beast a rest but maybe like Beryl says you need one. It would be good to get relief from the fluid. Thinking of you and yours. Keep up the fight, you too are an inspiration.
    Hugs Jen x

  3. Tess as the other girls say you really are an inspiration to us hope they sort out the chest drain soon for you. I agree on the 'having a rest' from treatment bit too... may do your body some good and not the other way round.Sorry you lost your friend too... so sad. Keep battling on my friend and stay strong Love and hugz Cynthia xx

  4. It is so hard losing someone who has inspired you Tess, my thoughts and prayers are with you and Normans family. I can well understand you wanting to battle this horrible disease 24/7 but as Beryl and Jen have said your body has been subjected to such an assault from chemo etc that perhaps it is time to give it a little rest before you start the next round of treatment. I have never heard of a permanent chest drain but I do know what a relief an ordinary chest drain brings so it can only be good.
    Keep fighting my friend
    Thinking of you as always
    Trish xx

  5. I can totally understand you feeling unsure about the treatment break Tess but I agree it may help you to 'regroup' and get your rest up for the next lot of treatment. I haven't heard of a permanent chest drain either but its a while since I finished nursing but I hope they can get something sorted out to ease your breathing asap. Such sad news about Norman my heart goes out to you and all those who have lost such a dear friend.
    I agree, you're a real inspiration Tess so keep on keeping on
    love, hugs and positive vibes on their way my friend
    Claire xx

  6. So sorry to hear about Norman. You inspire me and I am very proud of what you are doing. Always in my thoughts.

    Janet xx

  7. so agree with you about some of the musicians at the concert, then again some of the younger ones weren't that great either. Have heard about the chest drain which can really help with the fluid control. I can understand that the chemo itself causes so many problems it must be hard for your body to know what to do next.

    I so hope the breathlessness control helps, it is so scary just to listen to this, I can't imagine how it must feel.
    wishing you well as ever