@Duncan I agree with a lot of his comments, strange how “journey” got twisted around from it’s meaning. Not sure if it is a cultural thing. It’s basic definition is “The act of moving/travelling from one place to another” Forced or undertaken willingly is just a personal perspective of a moment in time.
Glad I am not alone in feeling that the language of cancer has to be reclaimed.
@Jimbo165 was just about to post a thread asking if anyone seen you refusing to move from the A5 butty wagon until the bacon was crispy enough and brown sauce had been found
Sorry to hear you have fallen for the virus in a one sided love affair.
Tiredness is a pain and seems to have no respect for blood count numbers.
At least they offered you the option of keeping your job.
Ha I like being thought of as belonging to this forum and especially as one of its correspondents, overseas or otherwise! Gives me some purpose as I get used to all this blood cancer malarkey.
I really empathise with how knackered you can feel, even if treatment is going well and we’re doing all the right things etc. It feels like a cruel irony to be too tired to do stuff that can help undo fatigue, which can still get me down.
Honestly, and I know it seems like it would make me more tired, but doing a bit of yoga at home in front of the telly can actually boost my energy. At the very least it stretches me and makes me feel like I’ve got my blood pumping to all the extremities a bit more than usual.
Maybe try to rest as much as you can before your appointment this week? Like you say, it would be a pity to miss it due to a virus knocking you out. Something I’ve asked my other half to do on appointment days is to be totally in charge of dinner and any domestic chores so I don’t need to waste energy thinking about and making food or doing stuff around the house. Perhaps you can call in favours on those sorts of days, maybe appeal to your kids? All these moments of rest add up to having more energy, I find.
And I know what you mean about not wanting to be stuck out somewhere due to getting worn out. One of my fears after diagnosis was not being able to go hiking as it’s been so helpful for my mental health over the years. I’ve had to shorten my routes and make sure they don’t have as much ascent as I just can’t manage massive climbs and I hate how weak my body feels. Being out in nature still helps and I’ve found plenty of trails that have amazing views and looped routes which aren’t dangerously remote! Perhaps you’ve got some pretty lakes, canals, or woodlands nearby with short flattish paths to wander…
Updates to the leader board:
Brain fog is now leading, no idea how it got there, but he ho.
Breathing and sound effects now at number two after cheque from over 18’srus
Clumsiness has dropped the roast out of the oven, tripped over the cat and fallen to third.
Tiredness would have been number one, just couldn’t be bothered to climb the podium
Good evening all, hope everyone is as well as can be expected. Just a pre-appointment update. I had a a telephone call from Matt the Haematology Receptionist this afternoon to inform me that my usual Consultant, Dr Garg, is off sick having broken her shoulder, and would I like to delay my appointment until she is well (no time given) or would I be happy to see someone else. I have chosen Option 2 as “new blood” (pun intended!) may have some new ideas about my fatigue management and my pain difficulties.
Fortunately my “lurgy” seems to be easing off a lot so I am good to go on Friday now.
Take care all, stay safe and be kind to yourselves.
@Jimbo165 Look about the cheque you sent regarding the removal of your consultant, it appears to be made from the same material as @Duncan 's fish and chips, it bounced Hope that new stand in from the teaching hospital has up to date information and tips for you.
Glad to hear the virus has got the hump and is looking to thumb a ride somewhere else.
Good evening @clickinhistory, and thank you for your kind words.
Yep, it has been a rough and tough few days with the lurgy but, like the idiot that I am, I have still turned up to work!
It would be good if the stand in does have up to date information and some new ideas but I guess time will tell.
I agree with you @Jimbo165, it is like a 2nd opinion, but if you feel they have not picked up on a point I think it might be your call to enlighten them
Please do report back on your experience and look after yourself
So glad you’re on the mend, @Jimbo165 and can make your appointment later this week. These face-to-face opportunities become so precious! Still haven’t met my haematologist. Also, just a gentle reminder that sometimes a day off can help us recover from illnesses faster as we only have our healing to focus on, although I understand it’s not always feasible or affordable to do so.
Like you and @Erica say, a second expert opinion means a second pair of eyes that might pick up on something different in your test results or from what you’re telling them. Take in your queries and see what they pick up on.
And @clickinhistory, may I add anaemia-related muscle weakness to the list of annoying cancer side effects? It’s now overtaken my former fatigue as limiting me most since diagnosis. I get out of breath just coming upstairs at home when I used to run up. Very frustrating!
Hello all,
My top 3 are
A sudden tiredness that comes from no where.
Clumsiness and not been able to walk in a straight line.
Brain fog mid sentence.
Also does anyone else get leg and arm aches.
I’ve got Essential thrombocythemia (ET) and take hydroxi.
Just wondered if the aches were part and parcel.
X
Hi @May14 unfortunately, it seems the leg and arm aches come with the deal of Essential thrombocythemia (ET) and Polycythaemia vera (PV), worst BOGOF offer since the curry peas in Aldi
Just a thought, @May14, but I was told by my haematologist that treatments for MPNs like Essential thrombocythemia (ET) and Polycythaemia vera (PV) aim to induce anaemia to decrease the amount of blood our bodies produce. Anaemia can cause weakness and various other side effects including foggy thinking.
I’ve been experiencing this myself recently but haven’t resolved an ideal level of iron intake with my doctors yet. Too much and it’s blood proliferation a go-go, which we don’t want. I imagine it’s a delicate balance specific to each of us.
Hi, Duncan, yes I suppose anything is possible.
I’ve been diagnosed just over a year and still finding new things all the time.
I like you want to take an Iron supplement but the Dr, s keep reminding me not to take anything with Iron in it!!!
New ones;
The variation in food amounts, one day a sandwich, a few biscuits and a banana makes you feel like you have eaten a banquet all by yourself, the next day, the banquet could be double and still hungry.
The trips to the loo because you are trying to stay hydrated enough (ok made worse by some weird double piping, but still a pain)
@2DB Chocolate is made from a bean and is therefore part of a recommended 5 a day, which means of course that your craving is a natural response to a lack of fibre in your diet
