So I have been stuck in my local hospital since Monday.
It all started well with a quick pass through A&E to be seen by the doctors. After being there for quite a few hours, Jem kindly popped in with sandwiches, crisps and biscuits for Colin which he really appreciated.
I was eventually admitted to the short stay ward. Here the welcome wasn’t quite so good starting with the nurse saying “put him in the side room, Oh I thought it was a man” I must admit however after tweeting about my experience all complaints were very quickly and professionally dealt with, and I was seen by a very caring Modern Matron.
I have since moved to a respiratory ward where the care is excellent and the nurses very caring and professional.
Now I am waiting for another scan. I have already had a chest X-ray, heart scan and CT scan of my lungs This time they are looking at my liver, kidneys, spleen, gall bladder and abdomen. A thorough MOT.
It looks like a chest infection is responsible for my fluctuating high temperature, but they are not ruling anything out. So we are going through the rounds of tests and different combinations of antibiotics to see if they can find out what works.
I did have a lovely visit from the Haematology nurse and doctor who are liaising with UCLH.
And yesterday the Pallitive care nurse popped in to see me, which helped. As well as visits from Polly, Mum and Colin. And a lovely surprise parcel from Kate of some leggings that might actually fit. I must have lost two and a half stone so most my clothes literally fall down!
It’s a shame as things were going so well and I was slowly recovering from the transplant, but apparently my immune system is still very compromised. Sadly we missed seeing a show in London with Sue and Angela and to meeting up and talking motorhoming with our friends. Never mind I expect there will be other times.
Tomorrow we are due to pick up our new car but I doubt I will be able to share that experience with Colin now. It looks like I may be here until MONDAY, I do hope not.
There is no TV, not that I have the energy to watch it anyway.
Trying to keep my pecker up!
Thinking of you Deb. See you soon Angela.
Hi Deborah. I do hope you feel much better soon. I know getting stuck at the hospital is nothing pleasant at all. I myself have been in and out of the hospitals since Feb this year, when diagnosed with acute myeloid leukaemia . Currently at king’s college London , however not happy here at all. Quite often they make me feel as if I was just a hospital number for them. Most of the nurses are “too busy” to come when you need them, bring my antibiotics late, hardly ever smile at you etc. Also had some problems with doctors too. I’m waiting for my bone marrow transplant, but not sure I want it done here. I’m thinking of transfer to the UCLH. Already asked Prof Mackinnon for a 2nd opinion. Would you say UCLH is a good hospital for bone marrow transplant … of course from your point of view. Are the nurses kind and were you able to trust your doctors there? Sorry to bother you with my problems, especially when you are not feeling well, but I would really appreciate your point of view. Hope you are better and can go home soon. All the best. Pavlina x
I have always been very happy with my care at UCLH even if it quite a drive for us. There is an excellent specialist stem cell transplant nurse who saw me through the process. I had a pretty rough time because I was quite poorly. Also when you first start the process you stay in The Cotton Rooms which is like a five star hotel, and receive your transplant in Ambulatory Care. Your partner can stay with you. Look back at my old blog posts and there will be some photos somewhere.
I found the nursing and medical staff very caring when I had to be admitted to the main Heamotology ward. My husband also stayed with me there in a day bed and I was in for 24 days. Of course this is only my experience. You could ask for more opinions on the myeloma UK Facebook page. I do expect nurses to follow the 6C’s (look it up) as a matter of standard. I also asked for a second opinion and my local hospital suggested UCLH and they agreed to take me on.
Good luck on your journey
You poor thing. I hope you have a good rest and the antibiotics start to work soon. Sending all our love and kisses xxx
Thinking of you and hoping you soon be better!
Keep on fighting!❤️
With you from a distance.. ianj
XxxxxxX Keith had a very bad chest infection it will fix xxxxx
Thank you xxx
What a rotten shame Deborah, just when things were going so well. Thinking of you extra hard with extra hugs, Nicola
Sent from my iPad
Thinking of you and sending much love.xxxxx
Still thinking of you lots and reading your blog (even if I haven’t commented for a while)! Sending you lots of love and strength!
Thinking of you also and hoping you can go home soon
Hey Deborah, I hope today’s procedure went well and that you don’t remember a thing 😇 I feel honoured and humbled to have spent the last week learning what a fantastic and resilient woman you are and I will continue to follow your journey, sending as many get well vibes I can possible push your way!!! Fingers crossed those delicious drinks they are giving you soon change to a lovely baileys on the rocks. Take good care of yourself
Love Jayne xx
How lovely to hear from you so quickly. I hope you managed a decent nights sleep and the your cats were delighted to see you.
I did remember the procedure but a lovely lady came in and gave me Reiki healing through out the process and that helped.
You have been replaced by a delightful (slightly confused) lady who is constantly going on about her lost clothes and is driving Pauline mad.
I am on a new ant-fungi drug which made me throw up, probably a sign of a misspent youth!
It was great to hear of all your travelling adventures and times in the army. You are the inspirational one!
I must get round to writing another blog but I usually try to wait until I have some good news to share.
Keep in touch