We were on a much needed holiday when we got our first clue that all was not well. Bert had had Bronchitis all through our holiday and against his better judgement he went to see the Dr the day we were due to fly home. The Dr in Turkey was amazing done loads of tests and told us after only 45 mins we were told that his white cell count was really low at 1.2 and that we were to see a Dr on our arrival home. He was admitted on the 15th of September and we were given the diagnosis on the 18th the day after his 56th birthday. His count dropped rapidly to 0.1 in a couple of days but then stopped at that. The Dr had told us that his chemo would start the following week. However she changed her mind, and sent him home after 2 weeks of antibiotics, antifungals and antivirals, which was just as well as I developed Laryngitis and a chest infection. I was amazed that he never got any infection. We went to the out patient clinic 2 weeks later and were told he was stable to come back in 2 weeks. on our return we were told he had to be admitted on Mon 2nd Nov despite the fact that his blood was still stable and he was to be starten on Chemo on Tue 3rd. The 1st lot of chemo mad him look dreadful I was not expecting that. However, he did look a little better the next day although he was very breathless and had tracking up his arm where the chemo had been put in. But all of that turned out to be ok. Here we are on day 4 gutted to find out that his brothers are not match for Bone Marrow, that left him feeling very upset and down in the dumps. So we will see what tomorrow brings
Goodnight
FormerMember
Debbie & Fudgecake thanks for your messages it always helps hi is starting to feel a little better and they seem to think the infection came from his Picc line although this has yet to be confirmed. Is it usual for all of this to happen when he is not neutropenic I expected when he was but not now HIs chemo will be delayed will that make any difference to him They said tonight that he may still get home for a few days but I am scared that it happens again do you think that is selfish of me?
Hi Teri, I was so pleased to hear that Bert is feeling better and more importantly they may have isolated the infection. I am sure you will both have been told how VIP it is to shower when you have a line in and not bath and to be scrupulous with hygiene, clean clothes etc. These lines are a godsend, an absolute necessity for the chemo required to treat AML, but so prone to infection. Bert will be more at risk to infection when he is neutropenic and when the white cells are on the low side. Also, if there is an infection, and the bone marrow is still somewhat suppressed, new cells will not be 'manufactured' so quickly to replace those killed fighting bugs. I must confess I felt 'safe' when my brother was in hospital, but he wanted and needed time out of his 'cell' as fudgecake calls it! It helps them so much psychologically and they need all the help they can get to fight this beast. No, you are not selfish, just normal!! Have faith!! My brother went to the Trafford Centre totally neutropenic and was fine .......
Hi Teri i think Debbie has already answered your questions but regarding the delay of his next course of chemo, they will not probably start it until his bloods have come up to a satisfactory level which is totally normal so don't worry.
I know Bert has had a rough time of it on his 1st course, many do, but you will probably find the 2nd course to be totally different, i remember my hubby was in for 29 days on his 1st course, but only 11 days on his second as he did not have any infection this time, therefore his bloods came up quicker, but everyone is different.
I was quite anxious the first time he came home also it's only natural but after the first day it was fine and after all the unit where he is being treated is only a phone call away,
I am sure Bert will be fine when he comes home as the reason he had to go back so quickly was because of the infection which has now been dealt with.
I'm not really sure what to write tonight Bert had 2 units of blood so should be feeling a bit brighter. But he seems to be so confused can't remember talking to me at lunchtime or the Dr being in to see him. He was upset because he thought I was not going to visit but I was there at my normal time as soon as I finish work I go straight there, but he forgot I was working, all sounds silly things but they are worrying me. His temp has stayed down for 2 days now which is good news and they have stopped 1 of his IV antibiotics and his fluids so lets hope it stays down.
Hi Teri, I was really heartened reading your Day 34 update! A top up always helps and I would think the confusion could be attributed to the infection Bert has had. If you are poorly and sleeping alot it is easy to lose track of time, events and normal 'routine', I bet you have thought on occasions, 'cannot believe it is XX time already' or alternatively, ' is it really only XX time?' ...... My brother devised a 'routine; which he always followed, not matter how poorly he was. He always listened to the radio and he always got washed and dressed, however bad he felt, even if it took him much of the day. He had a newspaper everyday, new fresh ones are OK. Where he was being treated provided everyone with a paper. He told me these things helped him focus. The only thinkg he did not do when he felt bad was check emails, and more latterly his facebook! It certainly sounds to be as though Bert is winning the fight against this infection. I am so pleased for you both
