[SonnyParticipant]

Hi Jenny,

Have you spoken to a social worker at the hospital,they may be able to liase with the housing team at Camden Council, the ward manager would be able to put you and your dad in touch with them ? Get the ball rolling soon so they can start to plan for his discharge after surgery. Also have you considered looking out of London, we live in Bedfordshire and my husband is now in remission following a SCT and is able to travel by train to UCLH (St Pancras is a few mins walk away), but when he was unwell we were able to request hospital transport ( this requires you to have a stressful phone call with the transport office each time as they scrutinise each request and do their best to refuse but this was essential for a while, there was no way he was fit enough to get there under his own steam).
Hope this info is useful, best wishes to you and your dad,

Ann

[SonnyParticipant]

Oh dear, Ive no idea whats happened with the font but hopefully its readable !

[SonnyParticipant]

Hi Amanda
I understand your frustration with the benefits system, my husband was diagnosed with MM in Dec 2011 but we didn’t start to look into applying for benefits until March the next year. He was turned down for DLA which we applied for with help from the CAB, then again after his SCT. We didn’t appeal the decision at the time as we didn’t have the energy mentally and physically but now regret that we let it go. He isn’t in a position to go back to work due to several fractured vertebrae(was a decorator). My employers have been fantastic in allowing me to increase to fulltime hours which means I’m at work more than at home but sadly its either that or lose our home. I would suggest you get in touch with your local Macmillan benefits advisor and take a look at a website http://www.benefitsandwork.co.uk which is run by benefit advisors and barristers, and I would give serious thought to appealing the decision. I’m not sure if you have to get your medics to fill out a section on the PIP paperwork but if that is the case try and speak to the one that knows your husband best, which may not be your GP. If your husband is still of working age would he be able to apply for ESA even though he took early retirement , or perhaps pension credit to top up your income ?
All the best,
Ann x

• This reply was modified 10 years ago by  webteam.

[SonnyParticipant]

Hi Tom

Sonny found as he began to feel very tired he would force himself to get up early, have breakfast, even if it was just a mouthful, then go across to Ambi care. That way he would be sure to get a chair, have bloods etc done before they get too busy, then he could relax. He would also try and go for a walk at some point in the day. Another tip to pass on is make sure your fridge is well stocked with drinks.
Stay strong !
Ann and Sonny

[SonnyParticipant]

OMG I cannot begin to imagine how you must be feeling right now, what exactly happened to your cells, did they explain to you ?

Ann x

[SonnyParticipant]

Hi Tom,

Just wanted to wish you all the best for Mon, my husband had his SCT @ UCLH in Nov last year. I was probably a bit OTT with things but I bought a whole load of toothbrushes from the cheap discount store and made sure he had a new one daily ! Also packed baby wipes and Sudocrem but thankfully didn`t need them. He also found the small cartons of rice pudding, jelly etc very handy when he didn`t feel like eating much. You`ll have a small fridge in your hotel room so stock up on drinks. Make sure you eat your ice lollies when you have your melphalan, Sonny managed to eat 3 in all as he started before the staff were ready with his infusion, but he didn1t suffer with mouth ulcers !

[SonnyParticipant]

Hi Tom,
my husband has just had his SCT at UCLH, following x4 PAD cycles, his Consultant is Dr Rabin. He stayed in the `hotel` which is called The Cotton Rooms, and went to the Ambulatory Care Unit in the Macmillan Centre daily for bloods/monitoring etc, he actually didn`t need to go into the isolation ward as he never developed any high temperature etc, so not sure re: internet access there, but there is access available in the Cotton rooms plus x2 computers in the sitting room. The rooms themselves are very comfortable, with small fridge and TV, there`s also a dining room where breakfast is provided and microwaves for heating up your own food, very helpful reception staff. Re: general advice for treatment and attending appts etc come prepared for long waits as everything seems to take forever to organise ! You may have been introduced to Janet the research nurse, we found her very helpful. Will stop there as I`m starting to ramble, but do message me if you think of any more questions, I`d be happy to help.
Take care, Ann

[SonnyParticipant]

Hi Ann

This is my first post since joining the site, my husband has just finished 4 cycles of Dex/Velcade/Doxyrubicin as part of the PADIMAC trial and has suffered similar side effects, to the extent that he spent a week end in hospital wth a sub acute bowel obstruction where he needed a naso gastric tube. He is now having a few weeks off before starting stem cell harvesting, is still feeling very tired and for the past few days has been having pins and needles in his hands. Hope your husband is feeling well again soon.

Love Ann (Jones)

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