Wednesday, 9 May 2012

Ups and Downs

I had my trial treatment and CT scan at Maidstone on Friday. I didn’t know at the time that this would be my last treatment there. Having done the trip every week since last November it kind of becomes part of the routine. However the research nurse phoned yesterday to say the consultant had looked at my scan and wanted to cancel my trial treatments. The only reason he would do this is if I have disease progression. I have an appointment to see him next Tuesday to discuss the results and my options now. I do think he might have spoken to me on the phone rather than leave me waiting anxiously for a week. I have also got an appointment the week after with the team at St Barts (Jeremy Steele et al) so will get their opinion too. I have requested that Maidstone send a copy of my scan to Barts which they have agreed to do. So at the moment I am not sure where we go from here. A case of watch this space. I need to keep positive now until I know what is going on - easier said than done. I have always been in control of my life and do not take kindly to having this control taken away. I will fight this bastard with whatever it takes. A few positive vibes, hugs, prayers - whatever you can offer would not go amiss right now.

The bank holiday weekend was not good weather wise but we spent Saturday in Tunbridge Wells – Ethan continues to amaze and delight us both. We stayed over on Saturday night so we got Ethan in bed with us on Sunday morning – what a little wriggler! We then went to Caterham to catch up with cousins Chris & Mick – lovely cup of coffee and choccy biscuits. We interrupted their decorating but hopefully it will be finished soon. Off then to Warlingham to visit my brother & partner. Another good meal and so good to catch up with Louisa too. Another sleepover and then back to Westbrook after a good fry-up.

I had a lovely reflexology session yesterday – soooo relaxing. An aromatherapy massage is booked for Friday in Canterbury – I’m lovin these pamper sessions. I have also signed up for ‘breathlessness management’ sessions which should start next week.

So that’s my week in a nutshell – many highs and one big low! Tess x


  1. Hi Tess, I am sorry to read your latest post. I certainly think your consultant should have spoken to you about his decision and not let it to the research nurse to tell you. I can understand how you are feeling and my thoughts and prayers are with you and Alan.
    On a positive side, pleased to read you enjoyed the bank holiday weekend especially with Ethan.
    Sending lots of love, huge hugs and buckets of positive vibes for you both.
    Stay strong my friend, thinking of you always.
    Christine xxx

  2. Oh Tess, I'm really shocked that the consultant hasn't spoken to you about this, there's nothing worse than waiting and wondering. I'm sure you're positive attitude and the support from your lovely family will get you through the wait and hopefully the docs will have plan B up their sleeves for you to discuss next week.
    Sending you all the love, hugs and positive vibes I can muster
    Claire xx

  3. Tess I have to agree with Christine and Claire when I say I am shocked but also appalled that the consultant didn't have the decency to speak to you personally. Surely they must know how much this will mean to you and the not knowing must be such a strain.
    If positive vibes and good wishes will get you through then you have them by the bucket loads, stay strong my friend.

    Jenny xx

  4. Sorry to hear that Tess. Positive vibs from me, you are in my thoughts and prayers.
    hugs Jen x

  5. Devastating news for you Tess. I'm so sorry. I know you will fight with everything you have and you know we are all backing you - even if we can't do anything physically for you.
    Love and many hugs
    Beryl xx

  6. Tess I am so so sorry to hear your news and I thoroughly agree that the consultant should have spoken to you, that his his job. The waiting is the worst part because you are in limbo but I am so glad that you are coming out fighting, your positive attitude never fails to amaze me.
    I am sending all the love, prayers an positive vibes that I cam muster
    Keep fighting my friend
    Trish xx

  7. So sorry to har your news Tess, and I agree that the consultant should have spoken to you. Sending you hugs, positive vibes and prayers.
    Stay strong and take care
    Beryl x

  8. sending you all the positive vibes we have, keeping everything crossed. As for the consultant, unfortunately so many focus on the disease, I think they forgot a human being is involved at all.