Methotrexate not working - moving to Embrel

Options
2»

Comments

  • radders
    radders Member Posts: 42
    edited 30. Nov -1, 00:00
    Options
    Lucy, thank you for thinking of us - I must admit I had little weep when I read your post... have been sitting chatting with OH - trying to get to grips with our day

    and oh dear, what a day - I couldn't have got it more wrong...

    It all started falling apart when the canula/injection with the dye was brought up - I know Michelle mentioned it on the forum - but I didn't get any info from hospital beforehand so I didn't prepare Bet for it. When she wouldn't have the magic cream and said she'd have the "butterfly" without it - I knew it was all going to go belly up.

    We went into the MR suite, she took one look at the bed, and said I feel frightened I'm not going in there. So I got on the bed and got raised into the scanner - making out that it was the easiest thing in the world and nothing to worry about.

    The radiographer and I agreed that there would be no scan today - then Bet said "so I still get my Jellycat" - when I said no, she could have it after the MRI scan under sedation - all hell broke loose. We had a screaming, ranting child who had to be almost chased around the MRI Scanner Suite - she was inconsolable - a nurse came to see us about a date for the GA - Betty was hysterical "I'll have it (the scan) today - trying to explain it was impossible because of the time and the state she was in was just making it worse.

    She was still upset as we left the department - but the play specialists were putting on a "Fete" in the hospital foyer - a few minutes of tombola and hook a duck, she settled down. Just as well as we had to go up to the ward for her jabs....

    I can't say I blame her reaction - just seeing the MR scanner unnerved me - can't believe I thought my brave little 6 year old would be able to cope with it - I think it was just one challenge too many. Have got to say that all the staff were exceptional in their treatment of her and me - made me feel that it was all the most normal stuff in the world, bless them. Poor Betty, on the bus home, she was all back to normal, chatty and happy then out of the blue "I'm sorry mum for not having the scan" - I could have wept, told her that there was no need to be sorry - that it had scared me, trying to make her know that she'd done nothing wrong - that I'd have done the same in her position.

    On a more positive note, I could hardly keep up with her walking back to the bus stop and meeting the train connection - and we literally had to run down the hill to home as she was desperate for a wee. Went back out and picked a big bag of conkers to take into school tomorrow. She then proceeded to eat a huge plate of chicken dippers with tinned spaghetti in tomato sauce (her choice) with complete relish - what a treat to see - think we've got our little girl back :D

    Haven't spent much time on forum today, but have been thinking of all the children like Betty and the rotten stuff that they have to deal with and how well they do it, and of the kindness and care of all you lovely posters.

    Best wishes Kath x
  • illihor
    illihor Member Posts: 283
    edited 30. Nov -1, 00:00
    Options
    Oh no the poor girl and poor you massive hugs. It will be so much easier when she's asleep. You can prep her for that and then she doesn't need to know about the rest. Our local hossie put her to sleep in the MRI room but because of all the equipment she didn't notice the bed/scanner up in Bristol we were taken to a side room totally tiny enough for a bed that's it :o and was put to sleep in there and then taken through to the scanner.

    I so hope the appointment comes through quickly but with enough space so she doesn't freak out again. I so feel for you and have tears in my eyes for you hugs. It's so stressful having all this done let alone having to deal with them upset then getting angry and screaming (I def have more than my fare share of that with Kayleigh). One thing to come out of this the boundary of her tollerance has been well identified. I can't believe they never mentioned the dye to you although then again our local hossie failed to even do it even though it was requested hence the need for a second MRI up in Bristol grrrr.

    Good luck and I hope you have a very stress free weekend. We're going to take the kids Pennywell Farm tomorrow, kinda a treat for Kayleigh for dealing with all this but also when we visited a few months ago they collected all the stamps so we have free entry for the kids hehe just us adults to pay and we get 10% off as members of paington zoo lol just have to get picnic stuff.

    hugs Michelle xxx
  • radders
    radders Member Posts: 42
    edited 30. Nov -1, 00:00
    Options
    Thanks Michelle, you are a real sweetie, so lovely, I really appreciate your words.

    Have a great time on your outing this weekend - we're off to Felixstowe, our favourite family place for some down time.

    Best wishes to all forum members esp. of Young Peoples Forum.

    K x
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Options
    You are off to Felixstowe? I live in Ipswich but I am off to Cambridge for a long week-end. Poor Betty, and poor you. No-one can prepare a child for that sort of thing, apart from being able to go and see the machine a few days before, so that they have some idea. Oh I am so sorry for both of you, the stress must have been tremendous. Have the down time in spades, lots of ice cream (whatever the weather, beautifully grey here today!) and lots of fun on the beach. I wish you well, I will catch up with everyone next week. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • anniesmum
    anniesmum Member Posts: 102
    edited 30. Nov -1, 00:00
    Options
    Ah Kath I am sorry - poor, poor Betty and I have tears in my ears when I read she said sorry on the bus. What a poppet! . The stuff our little ones have to go through - it is not right. Oh and us mums - tears you apart. Have a really happy weekend Kath, betty and family - and catch up next week. Lucy xx
  • radders
    radders Member Posts: 42
    edited 30. Nov -1, 00:00
    Options
    Hi Lucy thanks for your support

    A good weekend thank you, just what we needed. Hope yours went well.

    How's Annie? Hope still doing well after her joint injections...

    DD, we ended up in Ipswich this weekend, OH desperate for winter coat and not one for internet or lone shopping... so it has to be a family outing Managed to make it back to Felixstowe for a scoot/walk along the prom before the rain fell. Hope you enjoyed your weekend in Cambridge.

    Best wishes Kath x
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Options
    I hope he found a coat, there is not much in Ipswich really, Debenhams (iffy quality on occasion), M&S (not big enough) and Coes (quality but expensive). We had a good time, we arrived at 2.45, but managed to stave off the first gin until 4.30 :D ! The weather on Saturday was glorious, blue sky, bright sun, and I left my camera in the hotel - dumkopf! Mr DD went to the Fitzwilliam gallery and I shopped. Very successfully too! Also sat and had a cry in the market as everything was hurting so much, then pulled myself together and went to M&S, and cried again 'cos it was rubbish. Lots of lovely clothes for greyhounds, not for women with hips and a bust. Grrrrrrrrr. And everything in ghastly colours too - why do we abandon colour just 'cos it's autumn/winter? That is precisely when we do need pinks and yellows and greens and lilacs etc etc etc. Thank God for pred sweats, I can wear all my summer stuff now as well! I hope you had a break from it all - let me know if you are coming this way again - I'll stand you a coffee somewhere pleasant! DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • radders
    radders Member Posts: 42
    edited 30. Nov -1, 00:00
    Options
    Hi DD - hope you're having an easy day.

    We had a v successful trip to Ipswich, probably our favourite place for shopping, very much an occasional pastime and we've got quite simple tastes, we only need casual stuff so plenty of choice. Loved doing the park and ride - very easy and convenient and a good vantage point to have a good look about - not having to "help" OH find a car park space helps too.

    Used to spend a lot more time there a few years ago as my brother and sister in law had a flat at Neptune Quay - their business has been "mothballed" due to downturn in market - they've rented out their flat and now live aboard their old gaffer sailing boat. We now have to trawl around to wherever they are moored up (Pinmill, Woodbridge, Shotley Quay, Woolverston and others) if we want to spend any time with them.

    I miss them being in Ipswich (I used to love staying with them, pretending to be a "girl" about town) and used to see a bit more of my mum and dad (who live in North Wales) they seemed to prefer to stay there rather than coming to me and my madhouse - funny old thing...
    It's lovely now my kids are getting a bit older as now bro and sil are prepared to honour there responsibilities as Aunt and Uncle. My two got the adventure of a night aboard their sailing boat in August with crabbing, fishing and learning to row the tender thrown in. OH and I took full advantage of day and night without kids by staining our garden decking and touching up the gloss paint in the house!

    Sounds like you had a pretty civilised time in Cambridge - I remember those days. In fact thinking about it, OH took me to Cambridge on one of our first dates, it was bl**dy cold, it didn't put me off him though! We were heading to a museum but went to Browns instead! Shame about you struggling with the pain though - again I'm sitting here struggling with what to say to you about it without sounding trite - Is that a normal occurrence for you that you have to deal with pain that has you in tears.

    As to coffee, can't see us in Ipswich again for the foreseeable, unfortunately - but if you head out to Felixstowe anytime after Easter next year you'll find us there most weekends. :)

    Best wishes Kath
    PS Been looking out for Lucy - hope all going ok for her and Annie.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Options
    There was nothing abnormal about the pain - what is missing at the mo is my ability to cope with it. That ability will come back, it always has before so I don't see why this time should be different.

    There are some lovely parts of the world in this region, and you seem to know a few of them. I don't like the amusements end of Felixstowe that much, I prefer the other end, up near the Fludyers. Thanks to the bones I can't walk on the beach anymore, which I miss, but I do clatter down the groynes when things are OK, and get close to the water that way. Do I mean groynes? LIttle concretey pathways? Any, it is down those I clatter! I am glad you had a good time, I loved Cambridge despite all - funnily enough, I went to have my hair cut today and my hairdresser was reminiscing, in a misty-eyed kinda way, about Browns. She cannot remember her last visit - she knows it was two years ago but the fine detail escapes her - I wonder why! Take care - and don't bother about phrasing things nicely - I'm a tough old girl and will answer anything, as long as it isn't rude! DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • anniesmum
    anniesmum Member Posts: 102
    edited 30. Nov -1, 00:00
    Options
    Hi Kath - thanks for looking out for us - have just updated the Annie update thread but we're good at the moment. How is Betty? Hope she is still bouncing away. annie is just so much happier - makes you realise how the arthritis affects them when you see them "well". Not focusing on the negatives at the moment and just making the most of these times.......

    Have been busy with the other two and oh - if its not one thing it is another in this house. My fault for having three kids! For example - thought no.2 had appendicitis this morning and rushed her to docs - never before have I thought of myself as an over reactor - I didn't panic but clearly mentally prepared myself for a hospital visit and filled the car with deisel in anticipation!!! I wasn't so bad that an overnight bag was packed but.... - clearly it wasn't appendicitis but I am wondering if I just assume bad things happen to my children or i am just a a sandwhich short of picnic? Oh dear me I am putting it down to being better safe than sorry!

    Take care, Lucy
Back to top

Categories