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
Hi teri do not worry this is all normal! albeit distressing , so glad 1st course is over for you both, the next one will probably be for a few days less, i remember on my hubby's 1st course he had an infection 9 units of red cells and 3 platelets.
My hubby did not have a rash on his 1st course but he did on his 2nd course big time! it looked like he had chicken pox, they prescribed anti-histamine tablets and this sorted it out, he still gets a rash now when on chemo, they thought it might be caused from the cytarabine, but were not 100% sure,but they just give him the anti-histamines now when he starts his chemo.
Remember this is all new to you both at the moment, and very daunting but trust me it will get easier and you will soon get to know the routine, and what medications bert is on and what is due when etc. and red cell and platelet transfusions are routine, some people have more than others but it is perfectly normal.
Hoping that berts anxiety levels can be put under control, just look forward to his blood levels coming up and maybe having him home for a few days before course 2.
The rash is apparently Thrombocytopenia purpura due to low platelets but they are not yet low enough for him to have platelets but they are expecting that will happen quite soon. His hair is begining to fall out now I noticed tonight that his eyebrows are going but he just made a joke about bringing in polish and a duster. I think that's the first time in 2 weeks we have actually managed to laugh about it. Also after all the anxiety he is sitting patiently waiting for something to happen. I sure he will get a shock when it does. Still sleeping poorly but hopefully when the Psych team see him and get him settled that will sort itself out. Thanks for your reply it helps knowing I am not on my own
Hi teri i am so glad that you both are finding something to laugh about i bet you feel better for berts sake now don't you ?,like i said the first course we think is the worst, it's the not knowing what to expect, but from now on it will not be as frightening hopefully especially for bert,
Laughter is such a good tonic don't you agree, when my hubby is in hospital, yes he gets bored, who wouldn't but we always manage to have a good laugh about something, it's what helps keep him in the frame of mind he is in,positive.
Also you will soon build up a good relationship with the staff which helps,and bert will feel more at ease each time he goes into hospital.
Hair loss, we shaved hubby's off in the end as it was coming out in clumps so he decided it would be easier to shave it, with razor in hand we were in the shower room i attacked what was left, which was fine until the razor blade became blunt! so i asked him where his new ones were, the look on his face was worth taking a photo of! i haven't got any more, no problem i said i'll ask a nurse for a disposable one, off i went found a nurse to be told we don't keep them any more, i started to laugh to myself as i had left hubby virtually with a mohecan! when i told him i could not get a razor , he looked at me and said i hope your joking!, i knew at this point i had to get one from somewhere, luckily i managed to get some from the hospital shop, but we couldn,t stop laughing whilst completing the shaving, even the tea lady when she brought a cup of tea in wondered what we were up to ,as she could only hear us laughing, i quickly popped my head out from behind the shower room door and explained what we were doing, i told her what had happened and all three of us were laughing hysterically, at what he would have looked like if i was not able to get the new blades, and his eyebrows have virtually gone now also, our daughters keep threatening to draw some new ones in,but haven't managed it yet.hope to hear from you soon and keep finding things to laugh about, lol fudgecake x
I think our laugh the other night was a fluke he has been really down since then. but what you said about shaving you husbands hair amused me. We are not allowed to use razor blades so it will need to be clippers. He has had a couple of rotten daysbut we are still waiting for a psych assessment due to his depression and anxiety which I think is not helping. I suppose I just have to keep painting on a smile before gong in
Here we are on day 17 today Bert took another infection and is on IV antibiotics. His Hb has dropped again and he needed another 2 units of blood and 1 unit of platelets so I think he has finally realised that is the reason he cannot come home I hope when he recovers from this one he will settle a bit better. i on the other hand am getting really tired and came straight home to catch up on some much needed sleep
