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
It is a frightening setback, but apparently, there are some donors, and several people posting on here have had Bone Marrow transplants without having to wait too long. Obviously I can't promise a match, but it isn't all that hopeless.
Bert is apparently holding his own for now, so be optimistic. Lots of people are still walking away, much improved.
That's day 5 almost over I went to see Bert after work at 1 o'clock to find him in a state he had a sore throat his temp was 38 and after giving him his chemo the had to give him IV antibiotics. I then discovered that he had not been given his Nicotine replacement patch for the last 2 days so I was not a happy bunny. Thankfully I had a patch in my bag and 30 minutes later sanity had returned. he felt a lot less anxious and his headache went away. Then I discovered that they did not have him on a clean diet as "they did not know he was neutropenic" despite the fact that he has been for the last 6 weeks. Now after all that I feel a little better. Tomorrow will be better. Hopefully he will sleep tonight as he managed to stay awake all afternoon and our son brought him a Jazz drumming dvd (god help the staff) I think they must hate to see me coming as I complain about what may be silly things to them but are important to us. (for example when he was trying to eat his tea his PICC line dipped into his mousse and they just cleaned the outside of it leaving a plug of chocolate sauce in it and I had to ask them again to change it.
He has not had a particularly good day but we know to expect that. Hopefully it will be better tomorrow. We are not expecting him to have a transplant until around March so that gives us a bit of time for a match to be found. we still have to have another 3-4 sessions of chemo first according to his specialist nurse so it will be a long haul but hopefully we will come out of it at the other end
There is so much to remember on the ward about patients, so if the family can remind them, it must help rather than hinder. If they stay friendly, they can't be all that much upset. Sometimes, you have to intervene. I had to explain that my husband couldn't swallow large tablets, and could they give him a soluble one. Then they gave him Distalgesic, quite a bit stronger than what he had been having, so he wasn't complaining.
Hi, Good luck with it all. It's a bloody nightmare when it all kicks off but it's amazing what you get used to.
Don't be afraid to remind the staff about things that need doing. You don't have to be rude about it but neither do you need to be a shrinking violet. Poorly people can't always be bothered to ask for what they need so their families have to be a pain in the arse and do it for them!
And don't be afraid to ask questions. Knowledge is power!
