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Waiting for my oncologist appointment at the Macmillan Cancer Support Center. I have found a lovely book to look at. It is full of photos and personal statements. I took a snap of one that I liked
Morning all
Stargazer!!! It is good to hear from you!!! We do worry loads about the people who have disappeared from the forum for whatever reason, but I guess this kind of online group suits some people more than others, so I was hoping you were ok just not on here...
Sorry to hear you have had such a tough time with chemo 😞 It really is quite the ordeal, isn't it! But did you say you are now on the final stretch? Thank goodness. I hope the last cycle is more gentle on you. Please do pop back in once in a while to let us know how you are.
Most of us in here are on cycle 5 now, with 6th and final cycle in June. Although there are a few of us who have already finished up. And others who have a different timetable and will be continuing a little longer.
Daisy, your point about your sister is interesting. Mine is acting weird too. To be fair she has always been weird 🙂 we have never been close.... she is much older than me and left home when I was 4, and there were times when I've not heard from her for literally years on end.
But now she is insisting on calling every other day or so, because I think she feels obligated to show she cares because of the cancers and stuff.... but she is odd on the phone.... almost like she gets annoyed with me when she asks how I feel and I say that I feel not so good. I keep trying to explain that it is normal for me to feel cack at this stage of the cycle and that it is just normal side effects of the chemo and that it isn't the end of the world. But she acts like somehow I shouldn't be "suffering" at all and it feels like she thinks I'm just not trying hard enough to feel better 🙂 I think I just need to lie to her and tell her all is ticketyboo!
Families, huh??? 🙂
Anyway, all that aside, good luck for today!!!!
Sonia.... I have always loved that Dr Seuss quote 🙂 hope you start to feel better soon x
Oh Edinbird 😞 😞 reading your post I can really feel how overwhelming the job thing is. It couldn't be worse timing for them to be restructuring jobs while you have so much else to deal with! You do have youth on your side and I am sure you will bounce back after treatment quicker than us old dears, in terms of ongoing fatigue. But you can't know exactly how you are going to be until you get there, and it sk difficult for you to have to make a decision on your future when you don't know what you will want or be able to manage.
I think what I would do in the circumstances is apply for the job I would want if I was at full strength, and then ask them to manage it accordingly in terms of reasonable reduced hours etc while you build back up to full energy following the end of treatment.... rather than aiming low for a job you don't really want.
But obviously it is your call, and you understand your employer and your situation far more than I do.
Rosina..... that sounds just like afternoons spent with my other half's gran! She tells us repeatedly (literally, same stories over and over and over and overrrrrr) about all sorts of incredibly dull things happening to people we have never heard of. And if we try to tell her about anything we've been up to she really isn't interested and cuts us short and starts on her anecdotes again. You just have to grin and bear it! 🙂
And talking of dull anecdotes.....
As for me.....well.... I had quite the evening last night!!!
I was super tired most of the day yesterday, dozing off and on on the sofa, so by early evening I had taken myself up to bed.
Ironically when I got to bed I woke right up again so sat there reading....then I started to feel really warm, took my temp and it was 38.2 oh dear, here we go again!
But then I noticed that the radiator in my room was on full heat, which it shouldn't have been according to the thermostat setting. Went through the whole house, every radiator was on crazy hot. The kids were melting. House was like a sauna. No wonder I was warm!
We turned the thermostat right down but the radiators wouldn't turn off! Kept getting even hotter! Ended up having to turn them off at the boiler. Turns out that the batteries in the thermostat remote control are nearly dead and so it had gone loopy.... by the point we finally managed to get the house to stop its crazy overheating I was up to 38.6!! I was in a real panic, I couldn't work out how to stop the radiators getting hotter and hotter and thought the boiler was going to blow!!!! Thank goodness for YouTube videos, I found one that showed me how to switch it off....
I felt fine though, didn't have an actual hot forehead, felt ok in myself. So I really didn't want to over react and head straight back to the hospital when I was fairly sure my high temp was just down to the insanely hot house and the panic of trying to stop the boiler exploding.
So..... I decided to get out of the sauna and went and sat in the car on the drive and watched telly on my iPad:D by this point it was about 10.30 at night and my neighbour gave me the strangest look out of his window 😄
That worked to a point, I soon cooled down to about 37.8, but that is still too high.
Then I came back in the house that was still residually too hot and it started to creep up again.
So I basically sat there till nearly 3am repeatedly taking my temp and getting myself in a total state, which in itself was making the numbers go up and down, getting ready to call a cab for a middle of the night dash to to hospital....
Then, like a twit, I fell asleep, thermometer in hand! 🙂
And.... by some miracle woke up this morning still alive and with a nice healthy temp of 37.0
Phew!
I probably should have gone to A and E last night when I couldn't get it under control. But I'm kinda glad I didn't given that everything turned out ok in the end.
All this is so blinking stressful!
Here's to all of us getting through today as best we can xxx
Iove to all
Sarah
Glad to hear from you star gazer,
Hope everyone is good today, I’m still feeling run over by a bus, at the moment, but hopefully not long now till it passes. Oral thrush is getting me down. I’m just fed up with it.
Saw this, this morning and thought it was very fitting xx
Hey lovely ones,
Read through and caught up... I think !
Taxotere seems like a proper bundle of laughs .. not. I wasn’t looking forward to weekly Taxol that I have but although the weekly regime has its drawbacks I’m grateful not to be experiencing the side effects that you guys are having with Taxotere.
The one thing that I hadn’t anticipated on a weekly regime is the psychological adjustment. It seems like there’s a very short window available when you can stop thinking about being a bc patient. With a three weekly regime you could get some downtime.Anyway, whatever our regime we’re slowly but surely making our way through this bc quagmire and we’re winning.
Ive had 3 sessions of Taxol and I’ve another 6 to go. Then I have a break for a month and then I start rads for 5 weeks. Don’t know what the treatment regime is for that here but I’m due to see a radiologist so no doubt all will be revealed. Not looking forward to the topless bit among strangers but as you say Sarah, how else would they deliver such targeted therapy effectively.
They’re don’t seem to go a bundle on patient dignity here. When I went for my heart scan this man who did the initial intake told me to remove all clothing from my top half and didn’t offer me anything to cover up.Don't know why but I instinctively felt something wasn’t right with him so even though my other half was with me I tried as best as I could to make sure he didn’t see much. From the look on his face I knew I made the right decision.Then after a little wait the cardiologist walked in and I had to uncover. Felt very undignified.Thankfully, Mr Creep wasn’t in the room too.
I see that some of us are struggling with moods and very understandably periods of high anxiety.
Over here , there’s a psychologist attached to the oncology team if patients want to see him/ her is it worth asking your respective oncology teams if there’s a similar service available for patients? Even if there aren’t any individual sessions available there may be group sessions where you can get together with other bc patients and talk through issues.Do Macmillan offer any kind of talking therapy sessions?
On the subject of moods, I know it’s been an emotional rollercoaster for us ,what’s it been like for your partners/ loved ones? Have they said anything or are they trying to put on a ‘brave ‘face too?My other half had a bit of an outburst on Friday which is making me pause for thought. There’s a carers forum on here that he might benefit from but apart emailing and reading online news he doesn’t ‘do’ any IT/ social media stuff and also I guess he’d feel hampered if he thought I might read what he wrote.
Conundrums, conundrums.
Audiobooks, love them. I tend to listen while I’m crafting or decorating. I’ve tried it while gardening but that didn’t work out too well especially when I have to shift things. ! I started a book group here. Mainly to meet like-minded readers. I’m not into chick-lit or romances so I knew the only way to have a group for the kind of literature that I’m into is to start my own. It’s been an experience! That said I’ve got a core group now who are on the same vibe as me so that’s great. Seriously , thinking about starting an online book group so if any fellow readers are interested let me know.
Some pics for you. By the way SusieB , you and your hubby are justly proud of your garden, what a lovely space.And your wisteria looks wondrous, I’m jealous. Ive got two I’ve grown from seed , they’ll probably be about 18” high in 2025🤣
Hope that everyone is having a reasonably restful day.
xx
Morning everyone
Hope we are all feeling as well as can be expected
I woke up this morning, looked in the mirror and got a shock, I looked like a murder victim, dried blood all over my face and pillow from what looks like a rather spectacular night time nosebleed. Thanks T! 🙂
I've decided that, what with the nosebleeds and my lovely skinhead hairdo, I'm basically Eleven from Stranger Things 🙂
BUT that aside ....this time 3 weeks ago I was on my way to the hospital with a temp of 38.2, this morning it is 37.1 and I ain't going NOWHERE 🙂 woohoo!
Still feel weak as a kitten/achey all over/ generally cack, but I'm happy as larry sat at home on my own sofa watching Line of Duty. Fingers crossed I can remain out of the danger zone.
Rosina - thanks for all the detailed info about the art therapy stuff. That is really helpful. I'm still trying to work out how I can find a way to help with it on a part time/part qualified basis..... if it is generally administered strictly 1:1 then that might be tricky. I kind of want to find someone doing group art therapy so that I can just be a kind of classroom assistant.... I am definitely going to go to that one day workshop in September if I am well enough and I guess I can ask them there how best to proceed. Also I would rather work with adults than traumatised kids..... I don't think I would feel comfortable having that much responsibility! Either cancer patients or maybe domestic abuse survivors.... lots to think about.... I just want to "pay back" into society a little. Funny how a brush with mortality changes your priorities!
Sonia my last chemo is due for the day before yours. We are getting there!
Nettie sorry you are hitting that rotten stage of the cycle. Hopefully it won't last too long. I am almost nostalgic for FEC now that T is so much horrider! But I think I got away with a lot on FEC, I know it is a lot worse for some of you than I had it.
You sound like me with sports..... I hate to see the other team getting a total thrashing even if it means that my team wins! I remember my pal's hubby having a right go at me once as we were watching our team dish out a 12-0 victory against the Telford Tigers. I said "I wish Telford would just score one goal", and he immediately declared me a "fake fan" who doesn't understand how hockey works. 🙂
Lovemama, sounds like you have really been through the wars 😞 but great news that side effects are now clearing up and you are on your way back to your old self. I appreciate you giving us a bit of a timetable expectation, as I think we are all hoping to bounce right back to our old "normal" as soon as treatment ends, but of course that isn't realistic!
I'm hoping to at least feel a bit more like me by the start of 2020, but I have accepted that 2019 is a bit of a write off!
Edinbird, looks like you did a bit of a "count your blessings" exercise this morning. Always a good idea. I also am grateful that, although the treatment has not been remotely fun, at least it is available to us for free, and it is working to make us better. We will all come through this stronger. Eventually!
And as you say, in between the horrid bits, we have mostly managed to have some fun, days out, nice walks, even trips to France!
And great news about your pal's benefits and counselling... it is difficult when you care about someone who the system appears to be letting down.... a relief for you there. It isn't as if you don't have enough to worry about already of your own!
Oh and I can't sit down in my shower cubicle either:) it is tiny!
Daisydi enjoy the readybrek steroid glow 🙂
Sarah x
Hi my gorgeous ones. I’m managing to keep up with your posts but am in full steroid comedown/wbc build up this weekend and feel pretty poop. Barrying hate FEC but from what I’ve read would be hating T more. So sad you are suffering on it girlies. I’m sending you all a cuddle. Hopefully back with you in better form soon. On the plus side, I managed to drag myself downstairs to watch my team win the FA cup. Felt so sorry for Watford though as the goals kept going in. Xxx
Hi. girls
Just seen this on FB thought it was appropriate for all of us.
