Hi Everyone,
I am currently looking after my friend who shockingly walked into his local A&E with extreme back pain, on the advice of 111. 8 hours later they advise him that they are suspecting blood cancer. As soon as I found I made plans to come to London, that was on Easter Monday , on Tuesday we get told it looks like its MCL not CLLas they originally thought . Hisc MCL is very aggressive so they advised very strong chemo he is having RCHOP combined with RDHAP. He was in hospital for 10 days his experience was absolutely shocking to say the least. As the hospital he was in didn't have a specific ward, he was moved 4 times in AMU ( he was moved to a private room atc1 point) following MCL diagnosis and MRSA which they failed to tell us about until they tried to move him . We managed to stop move that then in the middle of the night they moved him to an open ward. He proceeded to have his chemo in an open ward due to the fact he couldn't go to chemo day ward as he had MRSA ( obviously). The chemo nurses were amazing .we were told once hw had chemo he would be moved to a private room , this didn't happen he was then moved to another ward for orthopaedic patients. This was terrible he was sharing another open 'ward' (treatment room) with 2 other men, one was coughing a lot and znother guy was homeless and on bail. They tried to discharge him on Wednesday afternoon having waited all afternoon for a visit from a Consultant Haemotologist - they told him they would come back to discuss all meds but they didn't discharge nurse mentioned an injection had to be administered on Sat Tuesday and Thursday 's we knew nothing about this. So, they kept him in another night so he could get his injection. We had to leave his apartment to go today for another injection to an outpatients clinic, when we asked about District nurses they said oh it takes a while and they are always reliable. A nurse rang to say he had an appointment he explained this was day 6 post chemo. Having previously being told by the Consultant Haemotologist that it was imperative that days 5-10 he had to be extremely careful avoid going out avoid mixing keep an eye on temp . I'd it goes up to 37.5 monitor it if it keeps increasing get into AE immediately for preventative SEPSIS treatment ( absolutely petrified). So we are very very anxious. Then to have to sit inna waiting area for 25 mins today having been told he eould get taken straight in given the circumstances. It's all been incredibly stressful.
He is apparently meant to be having the RDHAP at a different hospital as an inpatient that remains to be seen. After the RDHAP he should be moving up North to be with family and have access to better resources in one location.
Sorry for the long post I am very anxious and frightened for him, I want the best for him which I now believe is to be moved . But I am so scared about his remaining treatments and his stem cell /bonemarrow.
We feel shocked and scared I don't know if this is normal but when my Dad had Mesothelioma we were treated a lot better than this. We were given designated nurses and oncologists .
It was a huge huge shock he is a very fit 53 year old and this has come put of the blue.
Many thanks.
Hi 1stepatatime and a warm welcome to this corner of the Community although I am sorry to hear about the journey your friend has been on….. unfortunately his story is not that unusual at the moment.
I am Mike and I help out around our various Lymphoma groups. I don’t have Mantle Cell Lymphoma but I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Low Grade NHL eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ is different from your friends I do appreciate the challenges of this journey rather well.
Over the past 9 years I have been in hospital a total of 130 nights and am nodding my head at some of the stories you have put in your post…… it’s not what we expect from our NHS but in some health areas this is the provisions for expect and at times you have to make the best of what is offered but at the same time keep pushing for improvements.
It took over 14 years for me to be given a dedicated Specialist Cancer Nurse (SCN) as up until that point the health board that my hospital is in could not finance the post.
R-CHOP is a very effective treatment so it should make a difference quickly. Yes there is a real Risk of infection so great care needs to be taken but I feel open to some serious infections including Pneumonia twice and Neutropenic Sepsis twice.
The RDHAP is then used to open the door for Stem Cell Transplant (SCT) to go ahead . I have had 2 Allo (donor) SCTs (see my story through the link at the bottom) so the support and treatment he will get in a SCT unit should be far more stable as this is imperative in the SCT process.
We do have a dedicated Stem cell transplant that you may want to recommend to his family as the SCT process is challenging but do-able so talking with others who have navigated the same journey can help a lot.
Lets look for things to improve and his move North goes ahead seamlessly.
I am always around to help out as best as ai can.
