Tuesday 20 February 2018

Come With Us To Addenbrookes, 72 days post transplant

We've been heading across Suffolk and into Cambridgeshire to Addenbrookes Hospital Outpatients once a week since Colin came home after the stem cell transplant.

This is how our day goes.................... for a doctor appointment at 10.30 we have to be there at 9.30.

7am I get up and get the wood-burner cleaned out and laid, grab some breakfast, bring in a load of wood to fill the wood basket. Then I make a flask and pack some food to take with us.
Col has a flask, mug, tea bag and a little milk in a jug overnight in his room so he can have a cuppa as soon as he likes. Then I take him some cereal and juice for his breakfast in bed and then he gets up.
He has to rest again due to being worn out getting washed and dressed while I wash the dishes and wipe up if there is time.

About 8am we set off. Its a couple of miles to the A140, down that road for a couple more miles then the A1120 for 5 miles to join the A14. Then 28 miles keeping up with the traffic at 70mph until a truck traveling at a preset 57mph pulls out to overtake another truck traveling at a preset 56mph and, because it's only 2 lanes, everything slows down to 57mph for as long as it takes!
One truck decides to overtake another truck going up a hill!

  Around Newmarket it turns into 3 lanes for 9 miles and then we turn off and head down the A11 - back to dual carriageway for 8 miles and finally an ordinary smaller road for another 5 miles to the hospital. By which time it's usually heading toward 9.30 as the last few miles to the hospital are very busy with traffic lights holding things up.


When we first started going to clinic after his transplant we drove straight into the multi-storey car park and after getting the wheelchair out of the back I'd have to push him all the way into the Oncology and Heamatology Outpatients clinic. When he got a bit better I'd drop him and wheelchair off at the drop off point and he got himself in while I parked and then caught up with him just inside to push him to clinic..... which saved me a lot of pushing. Now I can drop him and wheelchair off and he can prop himself up and push the wheelchair right round to clinic, so that by the time I've parked and walked from the car park to clinic he's usually already checked himself in and had his blood test.

They do a ticket system so that you check in, get a number and when called go round the corner from the waiting room to the blood test room. Then into another area to be weighed. He has to have his Hickman Line flushed and dressed each week and they do this by letters of the alphabet cards and when your letter is called you go and get this done by a nurse  in another room. Next is the pharmacist who is there to see everyone who needs repeat prescriptions, she sends the prescription request on-line to the pharmacy.

Then we wait to see the doctor and we wait and wait..............and wait some more. There would always be an hour wait because the blood test results have to get to the doctor but usually it's 2 or 3 hours.
We've always got our flask and snack and there's a water cooler there too (There's also a (W)RVS coffee shop adjacent to this clinic but they are blinkin' expensive so we put up with the strange looks we get with our flask and mugs!).
Last week we were put in a little room to wait (and wait) because according to his blood test from the week before he was carrying a flu virus! which is odd as he's had no flu symptoms at all.
(All post-transplant patients wear face masks in the hospital to protect them from catching nasty things from anyone)

 Unfortunately the chairs in the little room were more uncomfortable than the main waiting room. He sat in the wheelchair and I went back to the main waiting room for some of the time.I did suggest he laid on the examination couch but that would have been even more uncomfortable!

While we are waiting I toddle off down to the Outpatients pharmacy to collect his tablets. It's run by Lloyds Chemist and usually very busy.........not really big enough for the size of the hospital Outpatients departments. First queue on the left to check in and they look on their computer and then give you a numbered ticket and tell you how long the wait is likely to be.......30 minutes is the norm. I either sit in the waiting area and wait for the number to come up on the screen or go back to the clinic. Then once the number is on the screen it's another queue on the right to collect prescription. We are so civilized with all this queuing! But you do hear a lot of moans and groans by people for whom this is their first time and don't realise just how long they have to wait. I was almost shoved out of the way one week when a lady's number came up on the screen and she thought that because her number was there she could push her way to the front! " Sorry, it doesn't work like that" I said and showed her my ticket number which had appeared on screen a few minutes earlier.......... she stood behind me and moaned for the next five minutes!

The wait in clinic is livened up by  a browse through the book cases in the corner where they have lots of secondhand books for people to borrow or buy for a donation. Two of the weeks recently we've been entertained by a lady Harpist which is such a nice idea......... Harp music is very restful. There are some jigsaw puzzles laid out and started on tables but I don't often have a go at them. I also do a lot of people watching - Cancer does affect all sorts of people - it's a great leveler. It's interesting to see how different people deal with the waiting. Sometimes I'll go and browse through all the magazines in the shop by the main Outpatients entrance -  and other days  wander right up to the other end of the hospital and go the the Bank - the only Barclays I know without long queues, or maybe nose around the gift shop, the clothes shop and Body Shop or the M&S food shop....... but I don't need to buy anything. ...... always amazed at the queue at the Costa Coffee shop!
If I'm into a good book that I've brought with me then I tend to stay and read rather than wander.

Eventually we, or Col on his own if I've gone off somewhere,  get called to see the doctor and hope he doesn't decide to prescribe some other sort of medication which would mean repeating the Pharmacy wait all over again.
When the doctor says "any more questions?"  we usually answer "please can we go home!"

Then it's a big push  up to the car park or he walks a little depending how he feels. Get the ticket checked to get the discount, pay at the machine and Hooray.... at last we are out and on our way home. Sometimes we get in  by 3 o'clock often it's nearer 4. Neither of us feels like doing much for the rest of the day, so it's get the kettle on, light the fire and then something on toast for tea.

Repeat all over again next week.

Back Soon
Sue

PS  Welcome to follower number  280 and thank you for jug comments. This new jug is a bit bigger than some of my other jug collection so was put straight into use.......after a good clean..........as the jug in which I put some full fat milk watered down ½ and  ½.....roughly......... for me to use.

50 comments:

  1. Phew, that really is quite a day! I guess you must feel like screaming sometimes with all that waiting and queueing and hanging around in less than comfortable conditions. Getting home again must feel heavenly.
    J x

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  2. It must be exhausting for you both Sue. You are obviously very used to the routine now and I love the thought of you taking your own food and drinks, it makes perfect sense.
    It must be a relief to be able to put your feet up with a good book at the end of these long days. X

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    1. Yes it is routine now. earlier appointments mean getting up very early and later appointments mean Doctor is running very late and we have to wait longer!

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  3. I read your blog every day and this is the first time that I have made a comment. I must say that I admire your dedication and tenacity both to Col and in the inspirational way in which you lead your life. I do hope that things improve for the both of you in the near future.
    Best wishes

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    1. Hi, thank you for your first comment... Great name! which has now inspired me to do a blog post on "Colins I have known!

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  4. We too have quite a few hospital appointments, and the waiting around is the worst thing (well, that and the huge parking fees!). At least our journey, although convoluted, isn't quite as long or frustrating as yours. I should think both of you are totally worn out by the time you get home.

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  5. Good grief - that is a long day, that's for sure. All that waiting around in queues must be frustrating, and I don't blame you for taking a good book - I should imagine you get a lot of reading done!

    I hope that Col doesn't go on to develop Flu but it seems that he's fine so far. I have a routine going with my Dettol wipes every time I have gone anywhwere/picked anything up/before eating whilst out. That said, I still managed to get a bit of a cold (from Keith I might add, who is not as thorough as me with the wetwipes!) and I shall be glad to see the back of it.

    Taking your own sandwiches and Thermos is essential - you could easily spend a small fortune on food and drinks at the Hospital, being there all day.

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    1. We had two phone calls the weekend before last telling him his blood test had shown he had flu! But he is fine...I'm the one with the symptoms!

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  6. I know there’s a lot of sitting around but I bet it’s a very tiring day for you both.

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  7. The hospital expeditions are such fun..NOT..but necessary , WE are trailing to Sheffield most weeks for endless tests at the moment , they think he could be having a rare form of seizures but its catching them in the act thats the problem , he may have always had them but the medication he was on could have masked them...ho hum we shall see. Does Col do driving instructer when your out and about im seriously tempted to gag my other half .

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    1. Goodness that sounds a long way although I don't know what part of Lincs you are.
      I'm very lucky as he is a very well behaved passenger!

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  8. What a long day and such a shame you have to go every week. I remember my friend driving her husband from Bedford every week for the same thing and both getting thoroughly exhausted. By the way, wood burns well, if not better, on a bed of wood ash so no need to clean out the woodburner every day. I do mine about one a week, sometimes longer.

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    1. interesting, Rachel. You run the wood burner with a completely full ash pan and the ash bed builds up in the burner itself?

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    2. I did a reply to this but it has not been published. I will try again.

      Woodburners do not have an ash pan, and the wood burns better on a bed of ash. Only multi-fuel burners have an ash pan which of course needs emptying regularly.

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    3. We have various wood-burners over the last 25 years. This one is a small multi-fuel and does have an ash pan but the grid doesn't lift out unlike one we had at the smallholding. I don't empty the ash pan every day and leave most of the ash on the grid, just taking out the nails ( from the pallet wood we burn) and make a little space for the air to get from the bottom vent up to the fuel for easy lighting.
      This one has a double burn feature - very clever, and the glass door stays clean which I like.

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    4. Thanks for the clarification...I have a multi fuel burner but only burn wood so tend to think of it as a wood burner. Thanks for taking the time to respond Rachel.

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  9. Long and exhausting days for you both, it is difficult.

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  10. What a day, something on toast for tea certainly sounds like the best option. Best wishes to you both.

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  11. Hospital visits take over your life, you spend so much time waiting, we always had books to read whilst waiting for my appointments, it's their merry-go-round and we all have to stay on until they let you go.

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  12. I wish for both of you that all the running around and waiting at hospitals will be a thing of the past, and Col is fine and healthy and strong. -Jenn

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  13. It must take the next day to recover, I should think.

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    1. It sometimes feels like it takes half the week to recover!

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  14. Exhausting - you described it well! Did Colin really have the flu?

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    1. Seemed to be just the blood test, he had no flu symptoms ...... Thank goodness

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  15. Wow sounds like quite exhausting! Hopefully Col will continue to improve and the trips will become few and far between!

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    1. We would love them to say we could have the blood tests in Ipswich but I doubt they will, as they don't seem to communicate very well

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  16. Wishing very hard for the time when you don't have to do this every week.
    Hugs-x-

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  17. tough days. sending good wishes to you both.

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  18. Days like that are draining. Keep that log burner going, grab your stash of books and then relax; you really do deserve to put your feet up.

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  19. You and Col have my continuing admiration. Sending you loads of hugs from Devon,
    Margaret P

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  20. It's a long, exhausting day but it sounds like you've adapted to the routine. I know that you've been sick, Sue, so be sure to relax as much as possible when you are home. Easier said than done I know.

    I ran back and forth to hospital for my mom for only two weeks but I got so exhausted that I got sick myself for the first time in at least 10 years.

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  21. I'm sure they try to make it as easy as possible for you Sue but it sounds such a very tiring time for you both.

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    1. It is easy really as everything is all in one area so not too much moving round for Colin. They get so way behind appointment times because of things that crop up with other patients or emergency cancer patients coming in or being called back to the ward. We try to be patient patients! Although when it gets to 2½ hours past our time it does get a bit frustrating.

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  22. I know the route you travel quite well. You described the journey spot on and it is not a good one and it takes a long time. Something people where I currently live just can not get their head around.

    How sad that the little room they had you wait in was so uncomfortable. Thank goodness you are a strong woman because this routine is brutal. Wise to take your own food and drink.

    Prayers for Colin to gain strength/healing and endurance for you. Take care.

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    1. Some wide open roads with no traffic would be quite good!

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  23. Wow I am exhausted reading what you both go through. On a personal note what masks does Col have to avoid infections? I just do not go anywhere for fear of picking up chest infections a mask would be ace.

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    1. They are just disposable ones that they have in a big box full on the counter in the clinic. We take one home with us so he can wear one as soon as he's in the hospital.

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    2. Thanks Sue, will have a go !

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  24. I can sympathise with you on your long exhausting day. When my daughter was diagnosed and started chemo in Valencia, we too had a weekly commute. Leaving home by 6.45am to arrive for bloods for 8am, then usually a wait for a couple of hours for the doctors, then another wait in line for the chemo, sometimes chemo took 4 hours but the worse was one that took 10 hours, then we had to drive a very poorly girl home. As you say why on earth do they have to make the waiting so painful with the awful chairs, absolutely numbing to the rear. Wishing you both lots of healing xcx

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  25. Gosh, that sounds exhausting, even though you are sitting around for most of the day. No wonder you have a quiet night when you get in, and no wonder you already have the fire laid ready to light.

    I hope this all comes to an end in the next few months and you can be at home together where you both belong. xx

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  26. Being ill, or being the person who accompanies the one who is ill, is not for the faint of heart. I was the "accompanier" for my father for eight years after his debilitating stroke, and feel for you as you go through the endless waiting. We have that here in Canada as well. I hope your husband's health improves and you can both strike this routine from your schedule!

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  27. Send this post to the hospital manager , it's great to have a relative's perspective

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  28. Exactly what I was going to say, John. The Cancer centre in Calgary was pretty wonderful when I experienced it more than a decade ago. In the waiting room wonderful volunteer ladies came round offering the best tea I have ever tasted and cookies, all free, plus they were very kind which I was very grateful for. While my husband had his surgery the waiting room for relatives had extremely comfortable reclining chairs, they were obviously close to worn out and I suspect they were cast offs from a nursing home. A good and thoughtful use for them and probably added nothing to the health region budget.

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  29. What a depressing insight. You should certainly send this to the patient liaison team. It's bad enough for a career, but how awful for someone who is already far from feeling their best. I know from the days when I regularly accompanied my son to hospital appointments that it is indeed an exhausting and demoralising experience.

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  30. After spending many hours in hospitals over the years with my husband, I can imagine your exhaustion. It became my new normal and I was so thankful for all the kindnesses that we received from the dedicated staff and the people that we met. Everybody had a story and it was cathartic to share. I hope Col’s checkups go well.

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  31. Its tiring just reading that. Hope Colin is still good and getting better each day all the waiting around will be worth it in the end to have him fit and well again.

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  32. You deserve a medal my dear! Col is so patient, when feeling very weak and tired.

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  33. What a day, all the best to both of you, keep strong, as you both so obviously are.

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