Monday, 7 November 2011

Good news, bad news?

The first thing I have to tell you is that, sadly but not entirely unexpectedly, our friend Carl passed away last week. His family dealt so bravely and lovingly for over six weeks with everything that happened - the heart attack, coma, travelling to Spain and bringing Carl home and keeping everyone informed about what was happening - and they are grateful that Carl is at peace now, as he had no chance of any meaningful recovery. A hard time for them but hopefully they are getting some comfort from the obvious love and affection which so many people have for their beloved husband/father. Neil will go to the funeral on Thursday but I am not yet well enough to go.

In other news, once more I have to try and remember what has happened, as I have been so lax about updating!  I felt much better last week than I had the previous week, when I was nauseous, not eating and feeling mildly spaced out. All very odd and we can only think that the long day travelling back late evening from Spain, cold air-conditioned plane and returning to considerably cooler temperatures just affected me badly. I have felt so much better and, although I am still not eating very much, I am doing my best! I have now lost over 13 kg since radiotherapy started and even I can see that I am on the skinny side of slim, so I recognise that I need to make more effort. In the past few days I have had a real hankering for fish pie, so I made a huge one on Saturday that we have been working through - almost finished (thank goodness, say my family!). I also had a baking afternoon last week and made fruit scones and wickedly chocolatey brownie (which I don't even like!) - I think Amy and Neil enjoyed coming home and having home-made goodies to eat! Today I am going to try Yorkshire Parkin - I remember enjoying it when I was young.

One reason for baking is that I have it in mind to try and make some Christmas gifts this year, while I have time to do it! I fancy making fudge, truffles etc and also some lavender sachets, with lavender from our garden. This might be the only year I have the time to do it, so I thought I should make the most of having free time. I am hoping for a trip to a craft shop soon to get the bits and pieces I will need to make sachets, etc.

I had an appointment with my consultant on Friday at the Marsden. I hadn't been for four weeks and had a session first with the pain management team, as I am taking part in a study they are carrying out. Between that interview, the clinic running an hour late and then having to wait for another prescription (apparently I now have oral thrush - a sign of malnutrition, so I really do need to eat more!), I was at hospital for about four hours in all! The consultant seemed pleased with how I am doing. She had a good feel around my neck, head, jaw and behind my ears on both sides and says everything is as it should be. I will have a scan to provide a baseline picture before my next appointment (in 5 weeks' time) but she seems to be pretty confident that the treatment has got rid of everything, between the surgery and radiotherapy. I won't be convinced of that unless and until I see it in writing, but I doubt that will happen. In the meantime, I just have to assume that she is right and that I am now in remission. I called Neil from the hospital to tell him and I felt that my reaction should have been one of elation but instead I felt it was a bit of an anti-climax - weird and ungrateful sounding, but I think it is difficult for me to think that there might be positive news when I still feel as if I am in the middle of it all and dealing with some unpleasant side-effects. In running terms, I feel I am only part-way through a marathon, with the finish line some way off!! Maybe this is how cancer patients feel - reluctant to accept that things are good, anticipating bad news - I don't know. God knows I want to be better and to know that this wicked intruder has gone, but for some reason I can't seem to think it could be the case.

I talked to my mum on the phone yesterday and, while she was relatively lucid, I don't think she remembered what is wrong with me although she knows I haven't been well. She will remain in hospital for a few more weeks while a care home is sorted out for her, since she can't live alone any more. It was odd to have a conversation with her where I didn't know whether she would remember my name, my husband's and children's names, or anything about us. Dementia is such a horrible disease. It robs people of so much.

There seems to be an awful lot going on at the moment and I feel very tired much of the time, although I am resting a lot. I'm just tired of feeling tired.


  1. Gosh, what a lot to deal with at one time. I am sorry for the loss of your friend.

    As to your feelings, it reminded me of a comment made by my husband after a scan when I was pregnant. We had gone through two miscarriages before this pregnancy, so it was always nerve wracking to wait for the moment when the doctor would say, "Yes, baby is looking good, all is fine".

    After one such appointment, we were leaving the office and my husband remarked, "After the scan is before the scan. It is only reassuring for a moment".

    So it is with you, I presume. The moment of relief that your treatment is progressing well is followed by the fear of what could go wrong between now and the next appointment. After the appointment is before the appointment.

    I don't think that this is unusual. My sister in law did not fully believe herself to be recovered until she celebrated her 5th cancer free year, and even now has moments of worry.

    Be kind to yourself, don't expect too much of yourself, keep baking yummy treats.

    I am looking forward to hearing about the Christmas gifts that you are making. Fudge is one of my absolute favourite treats of all time.

  2. Have you read 'Smile or Die' by Barbara Einrich (or something like that!). It's a great book ranting against the Positive Mental Attitude or blind optimism culture, especially in reference to cancer. It's an interesting read.

    And incidentally Nigella's chocolate fudge (just google it for a recipe) is super easy and yummy!

  3. It is understandable with all that has been going on in your life, to find it difficult to stay positive. People say it a lot to people ' oh you've got to keep positive'. But really to deal with anything we sometimes has to give ourselves a chance to experience all the emotions. Take good care of yourself x

  4. Completely agree with Mme Lindor's husband

    Can I recommend The Great British Bake Off book. It's a great book for helping me get fat :)