Another Week!

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Hi Everyone!

So, how was your weekend?? Mine was so, so. Jay seems to be slightly better but to me not much he sits and tells me he's ok and I just wish I could believe him and taking his word for it is not enough. I've had the `runs` this weekend (upset stomach) don't know if it's a bug or nerves, or something else. I've got a constant hissing in my ears too similar to tinnitus. I sit and watch Jays every move and sometimes he belches, and it looks as though he is uncomfortable with it. We went to the caravan yesterday (Sunday) to check that everything was ok because apparently there was adverse weather, and some damage was done in some of the parks but ours seems to have escaped the worst the only real damage we got was our table n chairs outside blew over so that at least got us out for the day. My sister came and sat with our dog for a while while we went over as we don't like to leave him too long on his own. Jay has had to start wearing mens Tena pants to bed at night as well because of his stoma he still has a slight discharge from his backside. He mentioned this to the oncologist, and he said this will always happen and he says its nothing to be concerned about, but it seems to happen more at night- time when he is asleep. Since finishing this course of tablets on Friday he's not been as tired and hasn't actually been going to naps in the daytime well he did on Saturday because he went for his covid booster in the morning but then we've been having to do certain things through the day over the weekend. He still seems pretty down though and is still limiting what he wants to eat. He just takes cupa soups for his lunch just now but in saying that we had a chippy tea last night because were at the caravan and he had a steak pie supper I took some of his chips because I just got a single scampi and the amount of chips our chippy gives you, you can hardly eat anyway but he ate it all and just left a couple of the straggly chips- just the ends. I just want Thursday to hurry up and come and find out what the next step is. I really want him to carry on with his chemo if that be at a reduced dosage then so be it at least I know he will still have some fight in him instead of refusing it completely which is what he is talking about doing. He just sits and sighs to himself now and again and I ask him if he's ok and he will say `I'm ok are you ok`? really sarcastically. I'm just at an absolute loss as to what to do and it's really getting to me and again, I know you all say it's ok, but I really feel bad coming on here and venting about it as I feel I can't talk to anyone about it. My sister who I have mentioned in the past has mental health difficulties phoned me last night after she got home and told me that the couple across from her was playing music again. This has been an ongoing thing with her that just is not happening before this couple it was a man who lived on his own who was apparently doing the same thing and he has since passed away, but he wasn't doing it as we checked with the warden constantly. She has tinnitus we know and we got her hearing checked for a hearing aid and she needs one but won't wear it. She sits next to me and sometimes she can't hear me and I'm next to hear but she can hear what she thinks is music coming from across in her complex?? We've spoke to her and told her we can't be doing with her nonsense just now as we know she does it at times for attention. Thanks everyone.

Vicky xx

PattyK over 2 years ago

So, it's been a sort of bittersweet day. We got the news from the urologist this morning that Jay may have to have nephrostomy which means another bag to contend with as his kidneys are not great due to the cancer spread in his pelvis. I though got an email from a sheltered housing association I applied to, to say that our application had been received and was being processed don't know if that means there are available properties or not but gives us hope. Later this afternoon the housing officer emailed me again to say that she would like ID from us i.e utility bills, bank statements etc (it is all upfront because I checked their website and the lady who is the housing officer appears there) so again don't know what to think of that if they are actually considering us for a property or not. Time will tell. My sister lives in the complex and I know another couple of the residents there so don't know if things like that go in your favour. I don't know how this treatment for Jay will go now he could get worse, but then again, he could get better but whatever way it turns out, I now we feel we need to be living somewhere else preferably on a ground level where he would find it easier getting around and not have to think about climbing stairs and at our age (I'm 60 this coming Monday) and Jay is 68 we are at an age where you begin to think of winding down. We've lived here for 33 years- a long time! and years ago I had a good rapport with my direct neighbours but like that they have all either moved on or passed on and the new younger ones moving in keep to themselves. I put it to Jay about a stairlift but he's not for it and that's fine. At least with sheltered housing I would feel safe because there is a degree of security there with a live in warden and other safety precautions with alarm call systems etc in place so I know if it came to it and Jay did get really ill or if I did for that matter, there would be someone always there to help. Time will tell though as I have said these things don't happen overnight and hopefully, we won't have to wait too long. Take Care.

Vicky xx

PattyK over 2 years ago

So, Today seemed to be a good day for Jay! He hasn't had a nap at all today which is a first in a couple of weeks. We had chippy tea tonight he got half a roast chicken- which sounds a lot but isn't really when you see the size of it, he ate most of it well left a bit he thought was really dry so the dog got that. I got a scampi supper but couldn't finish the chips (the chippy can be a bit over generous with those for some reason) so Jay got a few of my chips too. So. I can honestly say that's the most he has eaten more or less all week- it's been like a full dinner! it's just after 11 at night and he's not in bed yet for most of this week he has been going to bed about the back of 9 at night or 10 o'clock but he's still up watching the snooker. In saying that he could go back to square one tomorrow again so as they say `you sometimes need to take the bad with the good`. Night all!

Vicky x

PattyK over 1 year ago

So, my turn today, was at the nurse this morning at the GP practice to get results of my blood tests from last week. This is my yearly review because I have Tubeorus Sclerosis (google it). My cholesterol is up slightly to 5.3 it was sitting bang on 5 last time but think that was 2 years ago when they last did it because this test has not been done since covid. My kidney function has reduced also. The nurse said it is sitting at 48 and it should be round about 60 for it to be considered normal. She says I could be dehydrated but don't know why because I seem to have a lot of fluid intake. Ironically my blood pressure is stable which I thought with what is going on would be through the roof. I'd to hand in a urine sample also so the nurse said they are not concerned about anything major at the moment but once the urine sample is tested, they may get back to me if need be. Just not looking forward to this oncology appointment tomorrow with Jay.

PattyK over 1 year ago

Hi Everyone

So here we are, back in the wee chemo ward with Jay. He's currently getting his drips in and seems to be going ok. Nurses all arranged to come out and disconnect his pump and to flush out his line theyll come out on Wednesdays to change his PICC dressings then every second week they'll take bloods obviously because he'll be back here on the Friday for his infusions. Just need to see how he tolerates the pump. Take Care.

Vicky