Ask Caroline, a Macmillan Nurse working with people who have Leukaemia, Myelodysplasia...
Jane is a haematology nurse with extensive experience in stem cell and bone marrow...
Hope you are all well.
I have just seen my consultant to sign my life away and have been given the date of 27th June for my Auto just in time to watch England knocked out of the World Cup on penalties.... again!!
I don’t know if anyone else felt the same but I’m as excited as I am nervous. I think I’m excited about possibly reaching the light at the end of this long tunnel but am equally nervous that after all this, it doesn’t work. Did anyone else feel like this?
Hi Mark...... totally the same with my first Allo but rather frustrated to have to do it a second time, even although I did know that this could well happen........ as there is always another plan.
June 2014 was my first Allo so had the World Cup to watch at silly-o'clock then October 2015 for my second Allo I had the Rugby World Cup and I do blame Australia putting out Scotland in the QF for me ending in ICU with A Fib and a suspected stroke. But all came well.
Have you done all your per SCT tests yet?
The planning starts now........ is that suit case big enough?
Mike - living my new life and trying to make a difference
'Some journeys take us far from home. Some adventures lead us to our destiny' C. S. Lewis
SCT NHL T Cell Community Champion
Yes all done, dental check done, heart tested and thankfully still pumping and my lung function has improved even after 9 months of chemo, not sure how that works.
I have swapped my suitcase for a bigger one but still don’t know if I will have enough. Seriously that side is not too bad as we live only a short drive from the hospital and my mother-in-law is even closer so anything I forget could be brought in the next day.
Hope you are battening down the hatches as I have just checked the forecast and there is another storm coming your way, hopefully it will die down before reaching Devon as I don’t like seeing the palm trees swaying like that.
Speaking of World Cups and watching it at silly o’clock I went To Australia for a year in 1998 when the World Cup was in France which meant most games were between 1 and 6 in the morning. I arrived just when it started and remember phoning home after about 3 weeks and my mum asking what Sydney was like. Sadly I didn’t know as I had only seen the area around my backpackers and nearest pub that was staying open all night to show the football and that was in the dark also. It realised it was time to move on!
I assume you will be a true Brit and be cheering on England?
Mark even although I am Thehighlander and put on my kilt with great pride I am all for the UK but best not talk about politics and religion on the main forums ;)
For very obvious reasons I tend to follow Rugby as the Scottish Football Leagues are not the hot bed of exportable (down south) talent it once was. I will follow England and I do hope they do well but can't stand how the press and the pundits make their life awful.
A fascinating byproduct of my 750 hrs of chemo, 45 radiotherapy sessions and 2 Allo SCTs is I also have seen an improvement in my lung function test by about 7%.
For the 15 years leading up to it all kicking off I was having a CT every year to check on my lymph nodes and in 2012 my Dermatologist said 'you will know you have Asbestosis?'........ 'news to me?' so I was having regular lung function test once a year along with CTs to monitor its progress and it ok and was showing about a 20% reduction in lung capacity.
My last one post SCTs showed an over all 7% improvement and I am also off all the inhalers I had been on for 30 years for Allergy related Asthma and I am longer allergic to cats!!!!!
They don't tell you about these positive side effect during 'the talk'
............ we have had wall to wall sunshine for the past month so some rain will help the garden but Inverness is surrounded by a lot of hills so it does have a great micro climate.
The picture below was on my FB Feed this week and we are just down near the Left just off the picture and the view is straight down the Great Glen to Loch Ness and if you look very carefully you will see our little friend in the Loch ;)
You are doing better than I did as I was only terrified in the weeks before my admission. I hardly slept which didn't help my recovery as I was shattered before the treatment started. But it worked. I have just been told my chimerism is 100% a year on.
I remember well the day this all started 16 December 2016. I went for a routine blood test at my GP, then was called into hospital that evening as an emergency admission. I was really disappointed that I was going to miss a local book festival the next day, and also that I didn't have a chance to set up my DVD recorder for programmes I was going to miss over Christmas. I got a friend to record some of the programmes and oddly to this day I have never gotten round to watching them. I guess our priorities change.
Congratulations Tessa on your 100%, this is a big milestone on the journey.
Yes Tessa priorities do change and what was once important has been replaced by more important things :)
Firstly congratulations Tessa on reaching the 100%, high fives all around. I bet you didn’t picture this being your priority a couple of years ago but it’s amazing how they change when you go through this cancer/STC journey.
My priorities and general outlook on life have completely changed. I no longer plan 10 or even 5 years ahead and instead stick to the next few days and sometimes weeks but that’s it. If I am here in 10 years then great but I’m finally winning the old ‘battle between the ears’ and excepting where I am. I’m not going to spend my time worrying about, I can’t change it. I am just learning to enjoy being where I am and surrounding myself with the people I love and the people who make me happy.
The important thing I’m determined to get from this is that it makes me a better person, not that I’m bad, far from it. I am determined to no longer judge or get angry with anybody, life’s too short. To be honest there are people up an down this country that are fighting these and numerous other battles that are in a far less fortunate position than myself. I am lucky, I am surrounded by fantastic family, friends and work colleagues who have supported my wife, I and the children through out. I’m determined to help people not just by giving money to charities but also giving my time and trying to help people when they’re at their lowest because it’s people helping me that’s got me this far.
So yes, it’s amazing how our priorities change, mine is just to live for now, love more but most importantly worry and judge less.
Well done again Tessa (another high 5)
The view on one of our local and beautiful dog walks. That’s my wife in the blue, my beautiful daughter in front and a wonderful family friend on the right. All the boys are dragging behind again. Love Devon.
Beautiful... and many that I mean both the view AND your wife.
Hi Mark, yes priorities do change and even although I worked in teaching for 25 years but I tended not to like being in crowds!!! and was not a great people person, but I find that I am now spending more time investing in people and encouraging them to try and live the life they have been gifted in a full way.
Great photograph Mark, for years we have talked about doing Devon some time then we think of the logistics but one day.
Thank you jaymac123abc, my wife is beautiful and I’m now in trouble for not mentioning it before you. I could post pictures like this all day, it’s beautiful where we live, we are fortunate.
Mike, I’m sure you can fly to Exeter from Edinburgh, I’m sure it’s only a short walk from there to your house isn’t it??
It really is lovely down here but I’m born and raised in Leeds. We are only down here because it’s where my wife is from. All my children were born down here and as much as I miss my wonderful family & Leeds friends I could not leave this. It’s at time like this when I’m out walking the dog the I realise it can only help and aid my recovery.
Look forward to welcoming you all on you next holidays.
Yes, I remember being excited and scared at the same time. At the last minute they moved my check in date up a day and I flipped out! Probably just nerves!
I didn't pack much. Really I just needed clean underwear and a phone charger.
Great photo! Yes Devon is beautiful, as are your wife and daughter.... from the colour of the cliffs, is this somewhere near Seaton?
Mind you, my real love is Dorset, and we haven’t been there for ages....and are at present on holiday in East Sussex.
Yes, priorities do change, but hopefully when you are through all this you will be able to get back to planning further ahead. The very same happened to daughter, and disturbed her quite a bit, till her counsellor helped her decide that it didn’t matter at all, she could leave planning ahead if she wished, to just a few days; now that she’s been in remission 7 years she is planning further ahead as and when she needs to. Her personality has changed a little too; before all this began she could happily argue black was white, now she seldom picks an argument at all.
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