First-time house renovation

latecomer

Hi TM

Just wanted to say that I really hope everything goes as well as possible. It makes the minor house related problems that we have seem insignificant.

I hate the way some people are treated by the benefit system when so many just live of it and get everything they want. But I'm not going to start ranting about that as I could on for hours.
Anyway fingers crossed and we'll be thinking about you.

latecomer

OH gets very annoyed by the whole thing. She used to see people who are seriously incapacitated but weren't able to claim anything and others claiming everything available despite not having much (or anything!) wrong with them at all but knew how to work the system.

Anyway back to happier topics such as DIY

I've just spoken to our architect and he says that the building warrant will be submitted on monday in person along with all the structural engineers drawings and calcs and he expects it to take 2-3 weeks to be granted. He also said that the planning permission should be granted within the next week or so as there are no issues or objections. He;s going to chase it up on monday while he's in with the building warrant :j

Looks like we are finally just about ready to start on the extension. Need to sit down and compare all the quotes and see if we need anything clarified from anyone. then we just need to pick who is going to do it and let them get started.

Guess that means I'll need to empty the garage and the loft this weekend! Mind you its definitely for a good cause

TomsMom

Andy - I'm shocked - sitting here with my jaw on the desk. How can a consultant dealing with you not know anything about your condition :eek:. That is no use to you at all. Can you not ask for transport to the London hospital for the other consultant as you can't make it yourself? I know that hospital transport is quite common round here, maybe because we're fairly rural and the nearest hospital is 50 miles away. It can be arranged through the GP surgery or the hospital for anyone. It's provided free of charge. If anyone is discharged on a weekend then instead of the normal volunteer drivers in private cars or ambulances then they use the Red Cross (which doesn't cost them as much!).

Tell you what has shocked me too. No-one has come forward with any information of people/organisations/charities that can help patients and their families. You have to be the sort of person who knows or who knows to ask! The social worker who was dealing with OH's DLA claim was on a Macmillan placement and that is now coming to an end so presumably there will be no social worker in the unit soon. We didn't even know there was a social worker attached to the unit until told by a friend whose mother is being treated in the same unit, and she knew because she is employed by the DWP herself and knew the chap.

Anyway, things are falling into place now for next week. Between us (meaning the family) we've managed to come up with something. I will go to Bristol on Wednesday in the hospital car :T moral support for OH so that will make him feel better. I will have a couple of days to orientate myself with the hospital, the area and the apartment. My daughter will come to Bristol on Friday after she's finished work. We will then travel back on Saturday, which is the best day for my son to pick me up from my daughter's house.

So that's a good start. The next time they are available to ferry me around is the weekend of 3rd October.

I looked into going down on the train myself. Journey takes 5 hours 15 minutes with one change on the way down and two or three changes on the return journey depending on the day of return and the route. Obviously a longer journey back if there's more changes. The cheapest return ticket is £63.50 :eek: . Am I out of touch???? I think I must be. Now I wonder if there is any help available with the cost of getting a spouse to a hospital so far away???????? One question to ask the hospital. You probably have to be on some sort of means tested benefit to get any help.

Right, I'm off to find the bed in the loft that is buried under all the books/paper/boxes that we were sorting through. I need to make room for my daughter to be able to sleep here tomorrow .

TomsMom

latecomer wrote: »

Looks like we are finally just about ready to start on the extension.

Ooh, it's getting exciting now latecomer. Looking forward to hearing what's happening and seeing some photos.

Guess that means I'll need to empty the garage and the loft this weekend! Mind you its definitely for a good cause

Good luck with that, we're still sorting but glad to say there's a lot less now than previously. Worst job of the lot!

jamtart6

Hope it all goes well TM

In extension news, I am waiting for the arrival of bricks and cement. Yippeee!!

TomsMom

I don't believe this. I DO NOT BLOODY BELIEVE THIS.

Just had a phone call from OH. He's had his op, his central line is in, 10 minutes ago he was told the bed is no longer available and his transplant is cancelled for the time being.

Wednesday he was told he has a bed for next Wednesday, preparatory operation arranged and performed today and now THEY HAVE NO BED.

AAAAARRRRRRRRGGGGGGGGGGHHHHHHHHHHH!

I now have to cancel all the arrangements I made today with the lovely people only too willing to put themselves out to make it possible for me to go down to Bristol with him.

Now OH has to have chemo number 5 here at Bangor next week to keep the lymphoma away until they are ready to offer him a bed again and they've no idea when that will be. Poor sod.

Is there a bright side? Oh yes, we can rearrange for the bedroom furniture to come in two weeks time. I know which I'd rather it be.

andrew-b

oh no that's disgraceful (those aren't the words i really want to use!!)..is there someone at bristol you can contact and speak to directly? Maybe somewhere higher up the pecking order of management ? Might not get far but by making yourself heard maybe can get him there sooner. Surely they should have checked before they did the prep op today there was going to be a bed available at bristol!! Must be hard enough getting all psyched up as well as going through what his going through already ..but to then have it snatched away when your so close to getting him there...:mad::mad::mad:
Is there any option at all of getting him in somewhere else other than bristol? Wonder if you could send him private and send NHS the bill!!

Andy

jamtart6

This is an absolute disgrace. It's just not on at all. Have you spoken to your GP? can they do anything? who else can help you? You can't let this rest, even if they can't get him in in Bristol - what about somewhere else? Lay it on thick (not that it needs to be laid on as it is totally unfair) about it being too traumatic, scared of lymphoma coming back, not strong enough to face a 5th chemo before the op. etc., pyschological trauma - having to face thwe possibility of not surviving the op to have the oppoortunity taken away etc etc Keep pushing, I urge you.

My Mum's hernia op was cancelled last year, she was upset but they needed the beds for cancer patients, she accepted this as she said she knew the cancer patients were more important than a hernia op. They should be absolutely top of the list.

I'm so so mad and sad for you

andrew-b

Thought i'd have a quick google and see what i could dig up for contacts that might help us get TomsDad's bone marrow transplant back in the running..
Are any of these any use..
http://hospital.blood.co.uk/diagnostic_services/bone_marrow_transplant/index.asp
I'd start out with some of the national managers at bristol, Maybe try the BBMR and discuss with them if there are other options and the Hospital Liason team too. You may draw some blanks but it's a starting place! One of these people must be able to pull some strings somewhere.
You might not be able to do much before monday now but i agree with JT about not letting them get away with this. TD is weak already and shouldn't be being put through even the op today to get the central line in if he doesn't need it nor going through more chemo just because NHS can't get their act together. He might not have the energy to fight and you might not either..rest of your family will i'm sure help fight for him. His immune system needs fixing quick..there's too many nasties out there at the moment..you only have to walk into a hospital to be reminded by the bottles of hand cleaner.
Anyone know anyone who we can get to try pull a few strings here?
Andy

TomsMom

Ah bless you Andy. I'll take a look at the link in a while.

In the meantime, I've been mulling this over in my mind (too much time on my own!). My thoughts:

OH isn't as assertive as he should be and I bet he didn't ask WHY there's no longer a bed for him. That would have been my first question! Bristol sent an email to Bangor sometime today. I would have wanted to know what time the email was sent, whether it was before his op today and if so then why did they go ahead with the op. He's not the sort to rock the boat. He's too nice for his own good and wont "complain".

The only other place doing bone marrow transplants is London and that is out of the question as there's no funding for patients in Wales to go to London except in very exceptional circumstances. Also, it would be too long-winded to start the whole procedure all over again with another hospital/transplant surgeon. So that's out of the question. So Bristol it is.

I'm assuming that even if we could go private and bill the NHS the procedure would be so long-winded again (as with London) that it might take longer than wait for Bristol to fit him in again. So again, Bristol it is.

His 5th cycle of chemo has been scheduled for next Tuesday or Wednesday - that will definitely go ahead as planned at Bangor, no question about it. So if he starts kicking up a fuss and demanding to go elsewhere then he will probably lose the chance of that chemo and risk the lymphoma coming back again. The chemo needs to be done to give him the best chance of staying clear of lymphoma until the transplant.

The doctors at Bangor looking after him are probably as disappointed as we are so it would be wrong to vent his spleen on any of them, but he should be urging them to find out why the cancellation and push for a new date.

Local GP wouldn't do any good. Once he had been referred to Bangor the GP hasn't been involved at all other than to sign his sick notes when he needed them and he didn't need to go in for those, a phone call to ask for one sufficed.

I'll show OH what you've said when he gets back tomorrow but I can more or less guarantee that he'll just want to leave it to them and will be willing to wait until he's given a new date. His attitude drives me mad at times as I'm the one who jumps in quick with something to say (err... you might have noticed that :rolleyes:) to try and urge him to get something done.

Right, I'll go and take a look at what Andy's found.

ETA: Just had a thought. What about the poor donor? He/she would have been having tests and getting prepared for the procedure next week, arranged time off work etc. OH was told that the actual transplant procedure for the patient is a doddle (like a blood transfusion only it's stem cells in the bag) compared to what the donor has to go through.