Milestones Revisited


Karen Tighe, trustee at St Luke’s, blogs about living with a terminal illness, and revisiting her milestones. To read Karen's previous blog about milestones, click here.

"So 2016 was an action packed year. A year I was not supposed to make, let alone achieve all the things we did.

I have written before about the importance of milestones, but it is only as I have achieved so many of them that I can now honestly confirm how important they have been, still are and still will be.

Last year we went to Australia and back via Dubai. Then we went to the Netherlands to watch our son play Korfball for England under 19s (please look Korfball up, it is a real sport!). We visited Dubai again and then went to France to watch our daughter play Korfball for Ireland. John went off to see Marcus play for the England under 23s in the Czech Republic, with his twin brother, which gave him a bit of a break.  Then we hotly awaited the A level results to come out and two days later we went to France for a week with my husband's identical twin brother and family.  Six teenagers or older is fun and definitely increases the wine bill!  Not long after we went to the south of France to surprise a friend for her 50th birthday.  We had also, for some time, been building up to my 55th birthday party in November.  Well I had to have one just in case I didn't make 60!  Finally in December we we went on a three day cruise to Norway to see the Northern Lights and we saw them.  Phew that was a lot of travelling targets, but we were also lucky with lots of visits from friends, near and far, in between. The year passed in a rush and we always had something to look forward to.

This year started with the bad news that my doctors wouldn't allow me to go to Australia again.  Not because I am too poorly, but because my treatments aren't really going the way we want to and having access to any changes quickly is important.  As I work my way through all the treatment options available my death does loom nearer on the horizon, but with an amount of time still unknown there are still things I want to do.

When I bought my new 18 month diary, my husband asked me, 'don't you think you're being a bit optimist?'  I hit him!  Anyway, already it seems to be filling up with things to do; new milestones to achieve.  Spending time with our children is probably the most important thing for me.  Lizzie is in her third year of a medical degree and will, in fact, have her first graduation this July, but before then there is more Korfball for each of them.  We also want to fit in a trip to Dubai to visit my close friend.  

I am not as physically fit as I was this time last year, but I can walk a fair distance, although I get really tired really quickly.  So many chemos mean that it takes longer and longer for my bone marrow to recover and therefore I get fatigued.  Sometimes I need to have blood transfusions.  For the first time this Christmas I got a chest infection that turned into pneumonia, so I can see why my doctors don't want to let me travel too far. My main tumour is not giving me any symptoms, and the lymph nodes under my collar bones are stable. I have tumours in both breasts, but it is the ones in my upper gut that seem to keep growing and resisting treatment. I am seeing a healer and also started taking hemp oil.  I am prepared to try anything within my power to help myself. I am also investigating Chinese self healing to see if I can learn the skills to help myself.

I want to live as long as I can and I will keep trying everything I can. It is important to me that I keep trying everything within my power, to not just live as long as I can, but also live a good of quality life.  What is the point in having all these treatments, that have life changing side effects, if I don't use the time that it gives me to do things I would not otherwise have done.  My lungs are somewhat compromised with fluid in the linings taking up useable lung area.  My heart is functioning below the low end of normal, so you can see why I would get out of breath easily.  Neuropathy (pain and lack of feeling) affects both hands and feet.  Therefore my balance is not too good and I cannot open bottle tops and I continually drop things.  The drugs I take to manage the nerve pain makes my muscles twitch involuntarily, so writing is difficult.  As someone who pursued artistic pastimes, you can see that this is no longer possible.  One particular chemo made me deaf to higher frequencies in both ears, so I now wear hearing aids.  I am a bit like a lizard who sheds their skin and sometimes I can't see out of my glasses due to the blizzard that the skin coming off my eyes causes!  Before Christmas I started a new chemo that knocked me for six so badly that for the first time I actually had a conversation with John about not continuing.  Honestly I have never felt so ill.   in the whole of my life.  Fortunately they reduced the dose and since then I have managed ok.  A GP friend of mine calls me robust; I think I take that as a complement.  

As I start to run out of treatment options, there will come a time when either there is nothing left that we hadn't already tried or I make the decision that my quality of life is such that I no longer want to receive treatment to actively target my disease.  When I do this I will have anywhere between three and six months to live.  So anything that can push that time window into the future is good.

Planning to do things past that time window is what I believe helps to stretch it.  Subconsciously just by thinking there are things that I need to do at the end of this year into the next make the time seem more elastic.  I feel well most of the time, it is fatigue, and I mean bone weary, can barely lift your head off the pillow fatigue that I feel sometimes robs me of my time now.  I need things to do that motivate me to get my head off the pillow, when I really just feel like staying snuggled up under the duvet dozing the day away.  I do need to rest but, I need time with friends and most importantly,  with John and the children. I feel the need to tell them I love them as much as I can. I ask them do they get bored of hearing it and they say no, which is just as well, as I am not going to stop telling them. John and I are lucky that our children like us coming to support them play Korfball which gives us lots of opportunities to spend time together, but we make sure we plan in family activities. We will have a week away for the four of us in July.  Somewhere warm with places to see and time to rest.  Then if I am well enough later in the year, perhaps a visit to the US to see friends…"