Well, we did it. Pete, myself and our daughter went by train to London to visit the Brompton, wheelchair and all. The doctor there was very nice and discussed Pete's problems. She thinks the sarcoidosis has long since burnt itself out but Pete now has to deal with what is left behind. He has copd and heart problems. He had an ecg, x-ray and echo and his heart is a bit "stiff" and also is beating irregularly.
We did talk about his back being in dire need of sorting out at Southampton and the doctor was in agreement about that but they want to do another MRI scan. The problem is it means another trip to London, plus then having an overnight stay at some point for a PET scan and then in 3 months time seeing a sarcoidosis specialist (Mr. Wells) who Pete really should have been seeing years ago! It is all too much and we may well have to arrange some sort of transportation that is not a train.
Things went downhill when we had just left Victoria and had a message over the loud speaker to say the train would be delayed because their had been a fatality sadly at Streatham Common. We did eventually get on our way after nearly an hour so didn't get home until 7pm having caught the 8.23am train! Pete was beyond tired, in extreme pain and had had enough. Never again! We can either get someone to drive us or get Hospital Transport hopefully.
I now have to get on to Southampton again to fight Pete's corner to get this spinal cord stimulator fitted. Wish me luck everyone.
Take care all xxxxx
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sassy59
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Oh goodness me how on earth did you manage that trip.
Ive been there twice and i wouldnt even think of using public transport i was exhausted going by car.
Get on the phone as soon as you can and sort your taxi out i know you can book one but they say to do it as soon as you get the appointment through.
I dont know where you stayed but my sister and i stayed at parkwood which is on the hospital grounds...its not the best place ive been its a bit warn and tired but its convenient and there is no bother if appointments get canceled etc you just let them know.
My 2nd assessment was for 2 days so if you guys do that then your really close.
If i can give any advice please let me know but glad your home safe and sound ...just relax and settle back home x x
Thanks Mandy, you do speak sense there. Pete may have to stay in for one night for the PET scan but otherwise it is just day appointments. We will make arrangements for transport of some kind as we just cannot go on the train again. Things would not have been quite so bad if there had not been such a long delay to come home. What a pain it all was. Also so many people coughing and sneezing around us was not great.
Here's to a more relaxing, easier day. Hope you are doing ok and wishing you well. xxx
oops i think ive mixed that up i went to hairfield so just ignore the parkwood bit but the taxi is the same .......sorry its late x x x
Lots of luck sassy and hope next time goes smoother for you both. He is very lucky to have you to take such good care of him. x
Oh Sassy what a dreadful day for you...I am so struck by your devotion to Pete, he REALLY is the luckiest of men to have you by his side. I hope that you can indeed sort something out for the next visit
I wish you the very best of luck Sassy! Pete is a very lucky man to have you, what a long day...I think you both deserve a lay-in in the morning! in fact you're probably already turned in, zzzzzzzzz sweet dreams!
Bless you huff, we needed a rest after that and are not so bad today. Pete never has a lie in as he does not usually sleep so well. Never mind he can nap today. You take care xxxx
Hi Sassy59 am tired just reading that can imagine how tiering was .. but al sounds very positive well apart from train transport
Hope you get transport sorted wishing you and pete all best
Thank you so much Daz. You have inspired me to fight on and I will make sure Pete does too. We can never give up can we. No more trains though. Take care and wishing you well. xxxx
I would not wait for the next London appointment. I would see Pete's GP and relate the transport hell that he just suffered this time and insist that that has to be the last. The GP must support his need for transport for future appointments. Get the GP on side before you need to fight. Rib
I could do with some mojo Wendells that's for sure but I get lots of wonderful advice and support from you great people on this site. You all spur Pete and I on and we will get through this. Love to you and your family too. xxxx
Oh sassy, what a nightmare for all of you. It wasn't the warmest of days yesterday either. Please investigate Transport. Somewhere there must be help for you. What a lovely supporting family you are. Have a quiet relaxing day today to renew your fighting spirit I know you have, and are going to need. xxx
Thank you so much Suzy. We are so lucky to have great family and such support from everyone on here too. You are all an inspiration to me. The fight does go on and I am about to email Southampton to get their backsides in gear to rid Pete of his terrible back pain. Wish me luck. xxxxxx
What a trip,how you managed without the delay is a wonder, talk about superwoman, its bad enough by train under normal, no wonder you and Pete were knackered sorry tired. Best of luck pal on the Southampton trip. xxx Fred
Thank you so much Fred for your lovely words. Pete is tired but we could not have done any of this without our lovely Louise. She was so amazing. I know I would have struggled. I will pass on your kind words about Southampton too. You have a good day. Keep smiling. xxxxx Carole
Nightmare Sassy but you did get there and set the wheels in motion for getting Pete the help he needs. You should both go back to bed today for a few hours, to recover. Sounds like you need it.
It was the journey home that finished Pete off Argana. He had a bit of a panic attack when we reached the car at our station and I had to calm him down. He does seem to be better today if still a bit tired. Thank you. xxxx
Morning Sassy, Oh no,what a day,but you managed thank goodness. I can't imagine traveling by public transport when you are so poorly,Pete must have been in a bad state after such a day and such a worry for you, I certainly wish you all the luck you both deserve, Regards,Bulpit
Bless you peege. Our daughter was a star as I would have really struggled with pushing Pete around the streets. Having to go from Fulham Road Brompton to Sydney Street Brompton would have finished me off! Thanks for your very kind words. Love to you. xxxxx
The best of luck sassy. The thought of that journey is enough to make me feel ill never mind having to endure it and poor Pete. I hope that he is OK today and you are too. Lots of love TAD xxx
Hi sassy and Pete, what a long day, I thought going round birmingham was bad enough but London . Hope u get things sorted for next time. Stay strong Pete, and U take care sassy, fighting corners can be exhausting to. Xx sonia xx
Dear Sassy, have a look at this reply: it may help you get a car to pick you up in future. healthunlocked.com/blf/post...
I am glad to hear that Pete is getting help. Strange that he is supposed to see the sarc specialist even though it has burnt itself out..... I wonder what the specialist is supposed to do as you say Pete now just has to deal with what the sarc has left behind..... Any ideas. Best wishes to you all, lots of lovexxxx
Thanks for that jenss and I will get things sorted out before next time. It is true what you say that the sarc is supposed to have burnt itself out but maybe they just want to make sure about that. Pete is not so sure I must say.
You take care and hope all is good with you. Love, Carole xxxx
Hi Sassy,wow,your journey makes my 2 hour taxi ride sound like a walk in the park.I think your best bet would be to ask for hospital transport.Cab drivers can be a bit funny,not understanding our needs and such.Hospital transport can take a long time if they have a lot of pickups but they make sure you,re comfortable at least.It,s funny I moan about the time between appointments but we need that time to recover from the trauma lol.Wishing you the best of luck and kindest regards to Pete. D.
Thanks FarmerD. You are so right, time between appointments is very necessary for recovery. Hope you are doing well. Thanks for your kind wishes and regards to you too. xxxx
Ah Sassy, what a horrible experience for you both. Bad enough Pete being in such pain but to be stuck on a delayed train! That's the stuff nightmares are made of. I'd definitely be talking firmly to all the medical people concerned about future transport so that Pete can be comfortable when he has to travel.
I do wish Pete every success with getting the spinal cord stimulator fitted and you take care of yourself too Sassy. Sara xxx
Thanks Sara - I think the pain was the worst thing for Pete but it is a struggle getting doctors to understand this. I am hopeful that his back will soon be dealt with and will keep on until they do it.
I am taking care of myself and wish you well too. Carole xxxx
I do sympathize having just recently made that trip. Luckily my sister drove me (I live in Watford) Could never have made the train. I use oxygen so I bought myself a collapsible wheel chair that fits in the boot of my car. Unlike Watford General where you can put a pound In the slot to get a wheelchair; at the Brompton you have to find a porter and a wheelchair. Sounds like Pete should be eligible for some kind of hospital transportation?
Thank you for your sympathy Malinka and glad you managed to get help from your sister getting to the hospital. Pete does not have to use oxygen at the moment but I am sure he could get transport as it is such an awful journey. Here's hoping. Take care xxxx
sassy59, for both journeys, Southampton and London, phone either the hospital or the local surgery you are with. Your GP can arrange hospital transport.The best though is get it from the hospital, because they won't mind waiting 2 hours if that is what it takes, while the local GP transport might well not want to wait (I had the case where the driver threatened me with leaving me if the wait was longer. The journey was already 2 hours long, so I couldn't do my appointment in 5 minutes!)
Try to arrange all this as soon as possible in advance, so you do get transport. Mention for both case all Pet's requirement for oxygen, wheelchair etc, so they bring the necessary equipment and they know what sort of car they have to bring. Hope you get transport for both.
By the way, both transport should be free (taken in charge by the hospital).
I remember when the hsopital wanted me to stay, there are rooms where you both can stay ( if noticed in advance I suppose), so you don't have to go back and forth.
Thank you Marie, it was a bit of a day but we are ok now. The wheelchair from the British Red Cross was brilliant so thank goodness we did that. It only costs £5 to hire for a week. Worth knowing. xxxx
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sweet dreams!
Issue but no diagnosis 
Did I just imagine it?
So the boy on a winters morning wearing his matching coat and collar 💜
