Wednesday, 16 May 2012

Decisions, Decisions

Well it has been a long and anxious week. I had my meeting with the consultant at Maidstone yesterday. The bad news is that the cancer is growing once more - but this much we assumed from talking to the research nurse last week. Hearing it said though brings home the truth and reality of the situation. There is a build up of more fluid in the lung which would account for the increased breathlessness. Draining the lung is not an option.
The good news is that the cancer has not spread and is still contained in the lining of the left lung. My right lung is good and coping well and compensating for having only one working lung. This is a huge relief to me as I was imagining all sorts. The consultant said he could see 4 options for me:

1. Another regime of chemotherapy. A different combination has been suggested this time.  Do I really want to poison my whole body again? Do I really want to feel so ill and ‘out of it’ again? This will be my third chemo regime in 18 months plus 5 months on the drug trial. Can my poor old body take more bombardment? Is it fair to put Alan through this again? However up till now it has worked in stabilising the growth of the tumour.
2. The ADAM trial at St Barts - I have an appt there Friday week (to get a second opinion) so will ask for more info then. I applied for this trial earlier but as my cancer was not progressive at that time I was not eligible. Again the stamina needed to take part in these trials is high especially when there is a lot of travelling involved each week.
3. Phase 1 Trials – there are several going on around the country testing ‘new age’ cancer drugs (which target a specific tumour rather than the whole body as in conventional chemotherapy) but this seems a bit iffy to me as they will be testing safety levels in humans! Apparently there are several such trials at the Royal Marsden hospital in Sutton. Not sure I could face the M25 on a weekly basis even if I was well!
4. Do nothing, enjoy myself and call in Macmillan nurse care as and when required. Don't think I am at this point yet. Doing nothing to me equals giving up and losing control – perhaps I am wrong and for some people this option is the right one. Each person’s cancer is unique and each person faces a terminal diagnosis differently.

I will now be referred back to my oncologist in Canterbury and hope to get an appt to see her in the next week or so to discuss what I am going to do. So lots to think about and research but at least I do still have options.

Meanwhile I have tried to keep busy and reduce the stress levels. I have had an aromatherapy massage using Frankincense and Chamomile. I also had a reflexology session.
We had a lovely lunch and walk around Mt Ephraim Gardens.
On Sunday we had such glorious warm weather so we sat down on the prom watching the sailing yachts.  There were lots of cyclists out on the Viking Coastal Trail. Good to see so many children cycling with parents.
Other visits have included Gadds Brewery (for Alan’s benefit not mine) & the garden center where we bought some more pots and plants for the hanging baskets.
I start my ‘breathlessness management’ sessions on Friday with a physiotherapist at the local hospice. Hope it helps.

The grandies continue to amaze me – they give me hope and make me smile so much. We are counting the days now till we will all be together. I can’t wait to see Ethan & Lilah playing together. This is keeping me focussed and I know I must keep fighting. Happy days.

Congratulations to dear friends Janice & Tony who have become grandparents for the first time this week.

I am amazed at how many people access my blog pages but I don’t know who they are – please don’t be shy in leaving a comment or emailing me – nice to know you are there. Tess x


  1. My dear, dear friend... I really don't know what to say... all I can say is I am with you every step of the way and will keep praying for you and Alan too. I am deeply saddened to hear your news but do know you will choose the correct path for you to travel in the future be it more chemo or not. All my love and hugs always xx

  2. I'm glad to hear you've got a range of options Tess, its not an easy decision to make but it sounds like you've got some good support to choose the right option for you. I hope the new breathlessness management helps.
    love, hugs and positive vibes my friend
    Claire xx

  3. My dear Tess, keep on fighting, don't give in or up. This planet needs you
    Have strength
    Hugs Jennie j

  4. Hi Tess,
    difficult decisions ahead, sounds good to get the second opinion, would check out the trials, I know there are a couple running in London, where the trials have had success with other cancers and they are extending them to cover mess as it shares similar characteristics. At least that way you would have a good idea of side effects and aren't such a guinea pig.
    will dig out some info we were given a little while ago and post the link to you

    1. Thanks Amanda - that would be useful. x

  5. My very dear friend Tess, I don't know what to say after reading your post. I know that you, along with Alan will make the correct decision as to the treatment available. I am walking with you every step of the way and send lots of love, huge hugs and positive vibes.
    Stay strong and keep on, going on.
    Christine xxxx

  6. You've said all along you would fight this thing Tess - so that reduces your options by one. Only you can make the final decision which route to go down but I know you will only make the decision once you have researched eac oneh thoroughly, taken advice from experts and also consulted with Alan. Whichever path you choose I will be rooting for you and praying for the best outcome.
    Love and hugs.
    Beryl xx

  7. Tess you are one inspirational lady. Only you can make this momentous decision and I know that you will make the one that is right for you. It is good to know that you have such a lovely supportive family. If the love and prayers of your friends and family could cure this horrible disease you would be home and dry, unfortunately it doesn't work like that but you know that we are with you all the way hoping that our thought and prayer are making a difference
    Love and hugs Trish xx

  8. Tess, you are one brave lady who is a fighter. I think of you and your family often and send you healing. Such a comfort to have a wonderful supportive husband in Alan.

    Janet xx

  9. Bernard and Margaret19 May 2012 at 02:45

    Dear Tess and Alan,
    We know you will not give up and will continue to fight this disease.We know it takes a lot of courage and perseverance but you have got what it takes !
    Love from us.

  10. Our dear Tess

    What a prize fighter you are!! Follow your blog regularly. Just wanted to let you know you are always in our thoughts. Keep going honey, we are with you all the way. Lots of love and hugs to you and dearest cousin Alan.
    Angie & Peepsxxx

  11. You and Alan and the family are in my thoughts and prayers Tess as you make your decision. You are right to do what you believe is best for you given all the advice. Hope the family are with you soon.
    Jen x