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...
I am so tempted to do my thing for the Scottish Tourist Board with pictures ;) but one thing my wife and I have come to realise is that when we lift up our heads and actually look around us what an amazing island we live on.
I have had a blanket ban on flying and leaving the UK for over 4 years (now lifted) so we have went places around the UK that are rather amazing and a long talked about trip down the length of the Outer Hebrides is being planned as my wife Fiona's family line has been traced back to the Isle of Barra at the bottom of the Outer Hebrides. So we are going to see the island where her forefathers lived and were cleared from and put on ships and taken to Nova Scotia when sheep were seen as being more important then people back in 1846........ but I am taking her away to Madeira the end of June as she has had a long 4 years and needs to put her feet up away from the office in the house.
Moomy you highlight a very important step in the post treatment journey in how the lens we look through has been refocused and the things we do and say are done with more thought and measured responses. I am always walking slower, eating slower and taking time over stuff and when I was in teaching I lived on 3-4 hours sleep....... now I can have 7 - 8 hours. This journey is not one I would recommend as a way of getting a prospective on life but it can be a byproduct :)
....... ok I can not resist, this is going to be our view tomorrow when we do out for dinner ;)
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
Whooooop whoop Tessa at 100 percent xxxx
Moomy, you are close. We live in Exmouth which is behind from where the photo was taken. Straight ahead in the far distance is Sidmouth and Seaton is a little further on. The walks along the coastal path are beautiful if not a little hilly following all my chemo but we still enjoy them. Exmouth is the starting point for the Jurassic Coast which has wonderfully coloured cliffs all along like the one shown.
I think I was probably a little like your daughter and would quite happily argue white was black but now I can’t be bothered, I just let things go.
Mike, that looks like a lovely spot for dinner. There is something about eating whilst looking out across the water especially when the sun is setting, beautiful. Hope you have a lovely dinner.
exmouth , devon cliffs by any chance?
loved loved the seaton—??? tram
Yes we have the Seaton tram and Devon Cliffs. My family sometimes stay at Devon Cliffs when they come down from Leeds, It’s getting bigger all the time.
Have you had holidays here?
Had a call from the hospital yesterday and next Wednesday is all go for my SCT.
I was chatting with a lady from America yesterday on a different forum who had an Autologous SCT five years ago and said she wishes she hadn’t. Not as cheerful as you Mike and I had to remind her she’s still alive after 5 years. I think some people will try and take the negative from everything so I will not concentrate too much on her experience.
Anyway the reason I’m posting is to add the link below which is very encouraging, has anyone else seen this?
Hi Mark, so the starting gun has been fired..... it actually helps once you get a target to aim for so you need to put the wardrobe on those wheels ;)
Lol - some folks would give all their back teeth for 5 years more ;) and as my chest consultant that deals with my Asbestosis says "Live with a positive mind frame will actually add time onto your life span and makes it less stressful"
So I am surrounded by positive people so it rubs off (or of?) on me ;)
No have not seen the information in the link but interestingly my first Allo SCT was done using a treatment that had been devised by Stanford and it just about did the job and if it had it would have eliminated all the issues I had in Allo 2.
...... but you will have the World Cup.....or maybe not? It was on during my first Allo 4 years back :)
You are right, some people would give their back teeth for five years, me I had to give three of my front teeth. I had on going issues with existing crowns and although they looked fine and were not causing any issues, the dentist said they might be an issue going forward so out they came. Not been easy but my gums have healed nicely and I've even had my teeth cleaned and polished so hopefully there won't be any dental issues for me! The lady I mentioned said she has had problems both physically and mentally following her transplant which is to be expected but I'm confident I can overcome both when or if they raise their heads.
Having a firm date has put a spring in my step. Over the past few weeks I have been getting things together but always had the nagging doubt in the back of my mind but now it is all official, I can push on and finish getting ready. I have been uploading all my CD's onto my iTunes which I have been meaning to do for years and loading movies and audio books onto my laptop. I am part way through a degree in Electrical Engineering so have plenty of homework to catch up on should I get really bored, but hopefully the world cup will keep me from that.
Sounds good Mark, apart from your teeth :( I had not been to the dentists for over 10 years before I had the checkup before my 2 SCTs and was amazed that she said all is ok but you will need some work once you get the all clear.
I only got the go ahead by my team September last year (23 months post). I did procrastinate for a few months but I did go in January and two crowns and two fillings later its all done. But I did say to the dentist I would rather do my 2 SCTs again before sitting on her chair..... but she was great.
I would agree that the people I have talked with face to face who are going through or have been through the process and have been left with mental scars are those who could not control the battle between the ears.
As long as you have a variation of things to keep your mind ticking over and that will not allow the 'what ifs' to linger you will do good.... but homework!!!! good luck with that ;)..... got are those days.
Good luck Mark but don't be too ambitious with that degree. I had a lot of unfinished projects that were too mentally taxing to concentrate on. I have caught up a bit now though.
I am only taking it with me incase I get really bored but hopefully a decent England run in the World Cup will take care of that. It does raise an issue that I will need to consider though as a large part of my course is completed at home on a weekend or evening. This was ok but since my diagnosis, my priorities have completely changed and now I don’t know if I want to give up my spare time to do it. My boss is already aware of this and has said he supports any decision I make. I am pretty well qualified at the moment and the thought of giving up all the time I could spend with my children for a qualification I don’t really need is not on my priority list. I might change my mind after but for now I don’t think I will go back to it, is that being negative, I don’t know.
Mike, I’m not a dentist fan but mine was very accommodating moving people around to suit the dates my consultant gave for my dental work to be done. I know I needed mine doing but was going to wait until after I was cured with my first chemo regime but that didn’t work out to plan.
Can you agree a break time with an option to restart your course later? By default these things sometimes have to be completed within a specified time from the start but if the college knows the reason they should be flexible. That would clear your mind instead of constantly juggling and feeling guilty for which ever thing you aren't doing. Juggling too many balls can lead to dropping all of them. I'd say postpone what you can and leave space in your head for what is most important.
I did half of a history degree because the college reorganised and the course content changed. I enjoyed what I'd studied but didn't want to continue on the new terms.
I'm with the others, concentration is hard when you're in hospital (they keep interrupting you with all sorts of stuff, blood tests, measurements, doctors rounds, whatever!) and the chemo does add.e your brain cells a bit too. So don't guarantee on tough mental work being that possible.
Tough having that dental trip, poor you! But at least it's done. Hate the dentist, but I do go regularly. Mine has just retired so I will have to get used to a different lady.
I expect your date is creeping up all too fast now.....
Hi Mark. Great news! I wouldn't worry too much about being bored. You'll be fairly occupied with the task of getting well. I spent most of my time sleeping or throwing up. Didn't read any of the books I brought an fell asleep every time I started a movie.
I'll be thinking about you and hoping for a speedy recovery!
If you have any questions about Macmillan, or would like to talk to someone about cancer, we have a team of experts
who can help.
© Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man
(604). Also operating in Northern Ireland. A company limited by guarantee, registered in England and Wales company
number 2400969. Isle of Man company number 4694F. Registered office: 89 Albert Embankment, London SE1 7UQ. VAT no: