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Marie

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Marie Total Reaction Points: 0
Hello,
I'm new to the forum.
My son Thomas is 22 and was diagnosed with Hodgkins Lymphoma at UCL London last October '17 while he was on his placement year at Uni. We live in Belfast and Thomas has had all his treatment here at the City Hospital. He has been chemo refractory from the beginning, with progressive disease after ABVD and ICE. He has achieved a good response from a 3rd line combination of Brentuxamab and Bendamustine, he has had 8. It has been decided best for him to go straight to an allo transplant and we are waiting on a suitable donor, his 3 siblings aren't a match. The transplant will be back at UCL. We have been told that only do 5/6 transplants a year for Hodgkins patients. Does anyone on the forum have a similar experience? We are keen to find out about the ambulatory accommodation and how that works. I will be staying with Thomas for the duration. The team are hoping the transplant will take place at the end of October/early November.
Thank you so much,
Marie

Best Answers

  • TonyHTonyH Total Reaction Points: 18
    Answer ✓
    Marie

    I had all of my treatment and transplant at UCL and can't speak highly enough of it. I was in the ambulatory care section for much of that and the accommodation, The Cotton Rooms. The accommodation is great, it's to a very high standard. It's about a 2 minute walk to the Macmillan Cancer Centre where they give the treatment and about a 5 minute walk to the main hospital.

    They provide a really good buffet breakfast and then you can use the dining area for other meals and there are a couple of ovens / microwaves that you can use to make your own food. Being right on Tottenham Court Road there are loads of places to get food there and on Goodge St but also plenty of supermarkets for ready meals. They will provide you with a voucher every day for some food at the hospital canteen but I normally found that too busy and was concerned over the risk of infection whereas the supermarkets would be really quiet at certain times. They'll also provide you with lunch in the Cancer Centre if you're there.

    Ambulatory care has its own section in the Cancer Centre with some treatment rooms and also a room with a number of chairs where you can receive treatments. The system worked really well. You would arrange a rough time to go in every day and they were pretty flexible and you would see the doctor there too. However you don't stay there longer than you need to so the rest of the day is your own. It does mean you're monitored less than if you're in hospital, but personally I was happy that nobody was waking me up at 2am to take my blood pressure!

    For me the system worked really well and gave me so much more independence than being in hospital which I really liked. Plus it meant on a couple of occasions my wife could come and stay with me and they were very flexible about things like a couple of times my wife brought our kids in at the weekend to have breakfast with me.

    The only downside is that if you need to be admitted into the main hospital unless you're in ambulatory care then you have to go in through A&E. I had to do this a couple of times and it was then a bit of a battle and a challenge to get a bed in the hospital, particularly on a haematology ward. Also because of the demand for the ambulatory care beds you have to move all of your stuff out of your room very quickly if you move to the hospital, but hopefully they will be more sympathetic to you if you're staying there!

    The rooms themselves are well equipped. There's a small fridge, a bit like a hotel minibar size. The wifi is good enough that I could use an Amazon Fire Stick in the tv in the room to get a wider choice of tv. There's also a lounge area with a couple of computers that you can use.

    Let me know if you have any other specific questions. It was 3 years ago for me so things may have changed!

    Tony
  • Dieseldrinker62Dieseldrinker62 Total Reaction Points: 296
    Answer ✓
    Hi Marie,

    I don't know much about the accommodation at UCLH but I would have thought that when Thomas has the transplant itself he would need to be in a more specialised room with controls that will protect him against infection. As a relative staying with him it would be you that will be accommodated in the Cotton Rooms that Tony mentions, but I expect Thomas will need a more sterile environment depending on the type of transplant he has. During less intensive treatment and possibly during recovery when his immune system is improving he might be stepped down into the Ambulatory section or possibly the Cotton Rooms.

    The actual transplant rooms will be specially ventilated with filtered air which it sounds like the accommodation in the Cotton rooms are unlikely to have. When I had my transplant in Leicester I wasn't allowed out of my room into the transplant unit, let alone be transferred around the hospital. The risk of infection is too high when you have no immune system during transplant.

    The one thing I would say is that it is not total isolation as you might think. I remember years ago seeing programmes on TV where relatives couldn't go into the patients rooms and had to communicate through closed windows, with things being passed into the rooms through controlled transfer hatches. Earlier in my life I worked as a design engineer on the transplant rooms I was ultimately treated in and I remember such features being designed in (that were still there but unused when I was treated). Thankfully those days are gone and relatives are allowed access into the patients rooms though they may be gowned up and would need to be free of infection, but contact is allowed.

    I would double check with the hospital around where Thomas will be accommodated during his transplant and whether this is within a special transplant unit, ambulatory care, or as an outpatient.

    All the best,

    Steve
  • TonyHTonyH Total Reaction Points: 18
    Answer ✓
    Interestingly there were some people staying at The Cotton Rooms and having their transplants effectively as day patients through ambulatory care. These seemed to be older patients who were having less intensive treatment, so I was surprised when you said Thomas was expected to be there. Whilst I had a lot of earlier treatment through ambulatory care like Steve says it was never an option for the actual transplant as they were clear I would be in hospital. It was presented to me that as I was having TBI (Total body Irradiation) I needed to be in hospital.

    UCH were obviously a bit more relaxed than Steve encountered as I was allowed out and they weren't particularly strict on visitors. They did give me a mask to wear in the lift to get out of the hospital as the transplant ward is on the 13th floor!

    Again, as you find out more information let me know if you have any questions.

    Thanks

    Tony

Answers

  • Marie Total Reaction Points: 0
    Thanks so much Tony. It’s really great to read a first hand experience. Thomas just wants to get it over now so hopefully we will hear about a donor soon. It’s amazing that the treatment can be done as an outpatient, we had imagined him being in isolation but obviously it depends on infections. We reallly appreciate your response and I’ll be sure to get in touch with any other questions.
    Kind regards,
    Marie
  • Marie Total Reaction Points: 0
    Thank you Steve,
    I had thought that Thomas would be in a much more protected environment during transplant but we've been told this only happens if problems arise. Maybe we will get more information as the process continues. It's so ironic that you worked on the transplant rooms you were eventually treated in, strange how things come to pass but I'm glad and grateful to hear you have come through and are helping support others,
    All the best,
    Marie
  • Marie Total Reaction Points: 0
    Hi Tony,
    We have heard this week that there may be a potential donor and we could be in London for the transplant at the end of October if everything goes to plan. Thomas starts the first tests here in belfast tomorrow so I hope we will get more practical information about the process soon. Thanks again for your help and replies,
    Marie
  • TonyHTonyH Total Reaction Points: 18
    Marie
    No problem at all. That's great news that things are moving forward. I wish you and your family all the best for the process. If there's anything else, even if it's just advice on that area of London and what's around then please let me know.
    Tony
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