Saturday, 5 May 2018

A Clever Machine

We've done our first week of two consecutive days at Addenbrookes for ECP treatment on his blood.

 Here's Col hooked up to the amazing machine they use. As you can see it doesn't hurt and  he is comfortable enough to nod off. The time taken varies between 1½ and 3 hours for different people, luckily Colin is one of the people where it works quite quickly, although we got held up both days waiting for a doctor to check him out and then  waiting for tablets to come up from pharmacy. But on a good day with no traffic hold ups it should be half a day rather than a whole day out.



Up until a couple of years ago people had to go to St Thomas' Hospital in London or a hospital in Nottingham for this treatment. So we are grateful that we don't have to travel any further than the next county.
 Photopheresis; Extracorporeal Photochemotherapy ...
The idea is to get the Graft versus Host disease under control so that his mouth isn't so stinging and sore and he can eat proper food again. Do hope it works, as being limited to high calorie milkshakes and juices with a few yogurts is a bit boring. The only catch is that it might take 6-9 months to work and we don't know how long he will be feeling well enough for the traveling.
Dates and times are booked for treatment in a fortnights time and the nurses said "do let us know if you can't come because setting up and running the machine each time costs £900!"

Once again how lucky we are to have  the NHS.

Weather forecast for the weekend is really good ....makes a change for a Bank Holiday. The  Middy in the War Years event just across the fields from us is on Sunday and Monday. Col is hoping to feel well enough to visit again, although it will have to be by car and wheelchair, rather than a walk across the field. Even if we don't get there we will hear the steam trains chuf-chuffing up the incline and see the flypast by a Battle of Britain Hurricane........ cancelled last year because it was too windy.


My other plans are gardening, another church visit and two car boot sales, all local and cheap!

Hope you all have a good weekend.......and avoid the Bank Holiday traffic jams if you are out and about in the UK.

Back Monday
Sue


30 comments:

  1. I send my heartfelt good wishes to you and your husband, colin,sue.
    Our lives get turned upside down and we just have to get on with it, don't we.
    Hope you have as good a weekend as you can. Kind regards. Christina. X

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  2. Col looks comfortable...other than the cannulas etc in his arms. Hope he's well enough to get out and enjoy the events. All our recent dealings with the NHS have been marvellous, we have nothing but praise for them and especially the unfailing kindness and cheerfulness of the staff. We shall be enjoying the weather in our garden, living in a holiday area it gets too crowded to go anywhere on a hot weekend, especially a bank holiday one.

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  3. We always stay home on bank holiday weekends, can't see the point in sitting in your hot car for ages to get somewhere, only to be stuck in traffic jams on the way home. Fingers crossed Colin feels better soon.

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  4. Hope you manage a little outing if the sun shines.

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  5. Thank you for this post and you clear explanation of Col's treatment.
    I am in great admiration of both of you because though I’m sure life is very difficult you never complain but keep us up to date. I have a friend with the same disease so your posts keep me informed. I hope the weather is kind and the traffic light round your area so that you can enjoy the car boot sales. Have a happy weekend. Sue

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  6. What an amazing machine, do hope it works and quickly!

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  7. Technology is amazing isn't it. I hope you have a good BH weekend ☺

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  8. I feel for you both having been through a lot with Tom. It's not good having your loved one ill but we get through it don't we?
    We shall be car booting this weekend, twice, once on Sunday and again on Monday. You can tell I'm excited can't you. lol
    Looking forward to finding some goodies, hope you do too.
    Briony
    x

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  9. We’re heading out to a few thrift stores, no car boots, here. Although, i’d Love to find one! I hope you find a few goodies!
    I do wish we had NHS, here. (USA) Health care will bankrupt us if either one of us needs extensive care. I joke that we should move to Canada but i’m Only half joking!
    Best to you, both!

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  10. Hope you have an enjoyable weekend and you get to do as much as you can. Looking forward to seeing what bargains you got at your car boot sales.

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  11. Sending all good wishes to you and Col. We are so lucky to have the NHS. The staff at Addenbrookes are a particularly fantastic bunch. I have been a patient of theirs for 21 years now and have only respect and admiration for their professional attitude and care.

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  12. As you say the NHS is wonderful. Hope we keep it... Hope you both enjoy the weekend.x

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  13. What an amazing machine, I'm glad it doesn't hurt to be hooked up to it, men are so much braver about needles and all. I hope it works it's magic and he gets much better. Yes you are lucky to have NHS, I just wish the USA would get it's act together and put us all on Medicare. Hope you find some fun things at the car boots. ((hugs)), Teresa :-)

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  14. Hope the interesting new blood treatment works for Col. I bought 4 new plants Fri so I need to put them in pots today. Cinco de Mayo is big in my town this weekend so need a different street to get to ⛪ Sun a.m. Enjoy your close event!

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  15. The medical advancements are truly amazing. It seems each year there are more and better ways to treat illnesses. I hope this will soon enable Col to enjoy some of your delicious cooking. I hope you are both able to enjoy the War Years display. The steam train and planes especially sound like fun to watch. It sounds like you have a full weekend planned with the gardening, church visit and car boot sales. I bet you will find some more goodies for those adorable grandchildren! I miss shopping for young children - I always loved it and my two grands are too old for that now. Enjoy your holiday Sue!

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  16. I really hope this new treatment can help Col Sue.
    No Bank Holiday outings here....a nice stay at home weekend with a barbecue instead.
    Hugs-x-

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  17. Evening Sue

    Hope Colin's treatment progresses without any problems and what a blessing that his treatment is in the next county.

    The weather forecast for the weekend is sun - sun - sun. Hooray, at last! We're hoping to keep plodding on with the gardening and keep filling the wheelie bins.

    Good luck with your boot sales - you never know, you might find something worth millions £££ :-)

    Carol

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  18. Oh poor Col... all those needles and tubes...still as you say one very clever machine. Hope you both enjoy your weekend. x

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  19. Looks similar to the machine that my husband gets hooked up to for monthly plasmatheresis where they take out his blood, seperate the red cells from the plasma and replace the plasma. They do it by circulating it through the machine and it takes at least 4 hours for him. He has a port in his chest they go through. It is marvelous what they can do. Hope it helps Col, It does help my husband. Different disease but would be bedbound now without it.

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  20. Indeed what would we do without the NHS, we often hear about their failings but not not enough about the good. Hope you manage your little trip, we don't have any plans as yet.

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  21. We have Medicare here in Australia, Sue. While far from perfect, it is a help for many people to get medical treatment and care they couldn't otherwise afford. I do hope Col responds well and that he will once again be able to enjoy more to eat and drink than milkshakes. Glad it doesn't cause him any pain. MegXx

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  22. I send you love and best wishes and big smooches. All the best xox

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  23. I hope you are having a lovely weekend together. At least it is fine, for once, so there is a good chance of the flypast going ahead.

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  24. Have been following your blog for a while - always so positive! I like that! We have a wonderful NHS - yup with loads of probs but we'd be well & truly up the doodoo-creek without it!!

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  25. Take care both of you! Mum said the weather is gorgeous. She went to Felixstowe on Friday and though the weather was lovely, the bridge was closed for an accident and it took her forever to get home again. Hope you get to enjoy the sun a little.

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  26. Sending well wishes for Col from Canada, hope his condition improves with the ECP treatment and he's able to eat some solids very soon.

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  27. I'm wishing Col all the best with the ECP treatments. I'm glad it's comfortable for him and here's hoping he can enjoy some good food again soon!

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  28. It's amazing, when you think about it, what medical science can do now that was unheard of fifty or even twenty years ago. I hope the treatment helps in the way it is meant to. Food can be such a pleasure; it's hard when it becomes a chore.

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  29. Medicine has come so far in the last few years. I am sure glad you don't have to travel to London for the treatments. I am keeping my fingers crossed that this works in less than the 6 - 9 months time.

    God bless.

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