Personally I am not surprised you are feeling totally and completely exhausted after what you have had going on over many weeks. I believe in accumulative delayed fatigue, when I have a lot going on and also that the emotional side really takes it’s toll, along with the medical, practical, physical etc sides.
I have been feeling like a wet achy rag recently and had to really galvanise myself to get going. It will pass in it’s own time
I had my 2 vaccines in one arm Thursday with no ill effects
Yes, as always everyone, take care, stay safe, be kind to yourselves and keep on smiling.
Good morning @Jimbo165 and @Erica , I’m taking advantage of the clocks having gone back and of course waking up at my usual time of time of 6am which is now 5am to catch up on my emails.
Are you both feeling any better? I hope the effects of the flu and covid jabs didn’t last too long ? Are you settling into your new abode @Jimbo165 ?
No news my end, the grandchildren have been away so it’s been very peaceful and I’ve caught up on some gardening. All kicks off next week as I have them every afternoon .
Good morning @Gillyj, and thank you for your kind message, I hope that you are well and have been able to enjoy the peace and quiet before the grandchildren descend. Fortunately the effects from both the flu and covid jabs, along with the B12 one a few days later, all passed without too much discomfort.
Having said that, the effects from the Besremi still “kick in” with a bit of a vengeance 5 days after the event and, apparently, I looked "bl**dy awful” according to my work colleagues on the Wednesday after. I must admit to having felt “under the weather”, which is quite an admission from me! I suspect that most of us Forum users are the same as we have become more and more used to our “new lives” with the various treatments that we are subjected to. Sorry, that was quite deep for me!
As to the new abode, I am just about fully settled in now and have even been able to find just about everything that I have looked for in the larger kitchen with its increased number of cupboards and drawers!
Dear @Erica, I hope that you are taking full and proper care of yourself as you allow your own “systems” to recover and repair themselves from your recent troubles. It does feel, at times, that we each get more than our allotted share of ailments, difficulties and challenges, and yet we each rise up and overcome them in our way.
As always, and to everyone reading this and other threads on this amazing forum, take care, stay safe, be kind to yourselves and keep on smiling.
Just a quick update covering the last few weeks. after the breast caner diagnosis a lot of other scans were done and another load of cancer has been found in my abdomen. Primary site still to be found but appears to pancreas. I just wanted to high light the symptoms that have been passed of as side effects to besremi were probably hiding something more significant so please be wary of thinking everything relates to medication.
Oh @Chrispy Thanks so much for your post and I just wondered how you are feeling about the results of your scans.
Don;t forget the Blood Cancer nurses are there for you on 0808 2080 888 and all your forum buddies are also here for you to share how it really feels to be you.
You are so right we really are complex beings, with complex medications, and treatment regimes
Really be kind and look after yourself and please keep posting
Good afternoon @Chrispy, @Erica, @Gillyj and everyone else following this thread. My apologies for the delayed response. Chrispy, I am so sorry to hear of your recent diagnosis and your “heads up” to the fact that Besremi can be blamed for other, and more sinister, things within our body’s. Hopefully your medical team will be able to pinpoint the source site of this new cancer discovery and be able to offer help and treatment advice to defeat this unwanted addition.
Erica, I hope that you are still taking full and proper care of yourself, not overdoing things (Yeah, right! ) and recovering from your own recent troubles, whilst still offering support to other Forumittes. And if Forumittes isn’t a real or proper word, then it flippin’ well should be!
Gillyj, I hope that your grandchildren minding duties passed without too many incidents or too much loss of energy on your part!
As for myself, I’m still struggling with ever diminishing energy levels, coupled with increased fatigue. I feel as though I am ageing at “time and a half” these days! Possibly not helped by yesterday’s attendance at the Royal British Legion’s Festival of Remembrance at the Royal Albert Hall. A fantastic and moving event with a 3 hour drive either side of it with me finally making it home at midnight (way past my bed time!) before getting up early to attend the Remembrance Parade with my old Air Cadet Squadron at Castle Bromwich! Still, I wisely booked tomorrow off of work to give me a little more recovery time, although I have also scheduled a dental visit, blood tests and my car being serviced tomorrow! It’s all in the planning.
As always, my fellow and fellowette Forumittes, take care, stay safe, be kind to yourselves and keep on smiling.
Oh dear @Chrispy i am so sorry to hear your news, I can’t imagine what you’re going through right now and I hope friends and family are rallying round to support you. It’s so hard when one is on these medications to know what is associated with the drug and what isn’t as everyone seems to experience slightly different side effects and it seems that even the specialists don’t always know. What treatment are they planning?
@Jimbo165 you do seem to pack things in to a busy schedule don’t you! Not surprised you’re tired! Hope you’re managing to enjoy your new abode?
I survived half term with the grandchildren was good fun actually. What did exhaust me was a day up to Olympia to Spirit of Xmas- it was a fab day but so much walking that it washed me out for the rest of the week/ ridiculous isn’t it that to have one fab day we have to pay for it for several days after! Am back on normal energy levels now until my next injection next Sunday!
Good evening @Chrispy, @Erica, @Gillyj and all other Forumittes following this thread, I hope that you are all well and have not been blown about too much today, or inundated by the deluge!
Just an update for you following on from today’s telephone consultation after Monday’s blood tests.
My platelet count has increased “significantly” (up at 516 now) since my last tests 10 weeks ago, although they have been much higher in the past (mine peaked at 1215), with no obvious reason or cause identified. The Consultant’s worry is that the Besremi is now not working for me, in much the same way that the Pegasys stopped working for me almost 1 year ago. So for the next four weeks I am going back on to the Pegasys, at 90mcg every two weeks, plus 3 Hydroxycarbamide capsules per week, to see how that works out.
I now have the exciting prospect of a quick dash to LRI in the morning to collect some of the Peagsys injections so that I can have tonight’s jab tomorrow morning!
It is what it is and, as we all do, I shall plod on, even if mostly out of spite!
Take care all, stay safe, be kind to yourselves and keep on smiling.
Good evening @Erica, @Gillyj and everyone else, hope you are all as well as can be.
I am all Pegasys’d up now and the old feeling of feeling rubbish after the injection has descended upon me already, like an uncomfortable blanket (I was almost poetic there, I do apologise!).
I have 3 unused “2 shot” Besremi injections, still in their sealed boxes, which I took back to LRI this morning, in the hope that they could be reissued to someone else but, alas, they were refused by the pharmacy. They suggested taking them to the clinic (not an option on a weekend!), try a local pharmacy or my GP practice for disposal or, failing those options, take them to my local council for disposal. It just seem such an appalling waste of money to me (the Scot’s half of my coming to the fore there again!) as I understand that Besremi is about 4 times the cost of Pegasys.
As always, take care, stay safe, be kind to yourselves and keep on smiling.
Hi @Jimbo165 and everyone else, hopefully your body will get used to pegasys and it won’t leave you so tired. Why don’t you keep the besremi in the fridge - chances are they’ll put you back on it sometime?
hi @Jimbo165 No one seems to want to take unused medication even though they all say on the packet to return them to the pharmacy. I took back a pack of tablets when i changed Chronic myeloid leukaemia medication and they didn’t really want to take them even though they are classified as chemo…
I had my appointment with my haematologist yesterday and she wants me to continue on a 4 weekly plan for now of Besremi so more have been ordered. I was told by another hospital that NHS England have stated everyone on Besremi for Essential thrombocythemia (ET) should be back on Pegasys from 1st January 2026 but i think they are open to exceptions to this.
Good afternoon @Chrispy, @Erica, @Gillyj and all other Forumittes, I hope that everyone is as well as can be. And the “unwanted Besremi” are safely tucked away in the fridge for when the Pegasys stops working (again) and I get put back on Besremi.
Well I am one week into my second stint on fortnightly Pegasys injections, this time around combined with a number of (3) Hydroxycarbamide capsules per week. I had forgotten just how tired I used to be before, but I am now fully reacquainted with those feelings.
Work has been a tough week, with me almost calling in “sick/too tired” to attend but, like the old trooper I am (a/k/a an idiot!) I valiantly made it to work each day. I think it fair to say that the “bar” was set very low and I think that I more “tripped over” said bar, rather than cleared it effortlessly!
There has definitely been some confusion at LRI as it took several attempts by the Consultant, Dr Fiskin, before we actually spoke on the Friday afternoon, mainly because the weather was so atrocious that I could neither hear my phone ring nor could I feel it vibrating! But we finally spoke on the Friday afternoon and then recent changes came into effect. Imagine my surprise then, when I got home on Tuesday to a letter telling me I had missed the telephone consultation. A quick call the next day to the appointment department sorted that one out, or so I thought. I then had another telephone call, again late in the afternoon, from another of the team, this time Dr Wharin, who was just “checking in as we hadn’t been able to connect” the previous week. In all honesty, it is heartening to know that they do do (Yes, I know I said do do then!) follow ups when they have been unable to make contact, and it was nice to chat with the Dr for a little while as she frantically slapped the computer!
I am back at LRI on the 12th of December, by which time I will have had to rounds of Pegasys so it will be interesting to see what the blood results are then.
In the meantime, take care, stay safe, keep warm, be kind to yourselves and keep on smiling.
I applaud your determination @Jimbo165 in pushing yourself when you are obviously so tired but please don’t harm yourself in the process! I know how important it is though to carry on “as normal “ as much as possible.
I have my 97 yo mother staying atm as she’s ill with a chest infection- I’m finding it very draining as it’s like having a young child around! Spent 5 hrs today at the doctors and hospital- very exhausting! To cap it all I was supposed to be going away for a few days next week which I now won’t be able to do.
Oh @Gillyj and all I expect you are absolutely exhausted and really in need of getting away for a few days next week. The best laid plans and all that. I hope your mother feels better soon.
Yes, @Jimbo165 you sure are a stalwart trooper, but your health must come first. I find it so difficult to know whether to push myself or not, I know which is the easy option, but when did I ever take that option, do I feel better or worse for it, who knows because I do not know how I would feel if I took the other option. By which time I have confused myself completely.
We await you reporting back on the 12 Dec @Jimbo165
I am taking care, staying safe, keeping warm, being kind to myself and keeping on smiling and I hope you are all too.
Hi @Erica@Gillyj@Jimbo165 and everyone else. Just a quick update. I was diagnosed with stage 4 cancer in my pancreas and started chemo yesterday. Haematologist has spoken to my oncologist so they are managing it all between them. The interferon has been stopped just after i picked up 5 pens of besremi so i have a fridge full. They are assuming platelets will drop with the chemo.
Anyway not feeling too bad and i have lots of anti sickness meds that are helping. Not sure what the future holds but i am living it week by week until i am told otherwise. The chemo will stop working but that is a bit of a way of yet. Looking forward to a relaxed christmas with my daughter and my brother.
xxx
Good evening @Chrispy@Erica@Gillyj and everyone else “dipping in” on this thread. That is some unwelcome, unwanted and shocking news you’ve been given there, and I am so sorry to hear this. It does sound as though your team “are on it” though, which must be of some comfort to you. Did you have any indication or feeling that this was coming your way?
I hope that you will continue to feel “not too bad” and that Christmas with loved ones will give you something else to concentrate on.
We are all here if you want or need someone to talk with/to, or to vent at.
in the meanwhile, take care, stay safe, be kind (Copyright @Erica !) and keep on smiling.
Hi @Chrispy (and all) I really felt for you reading your post you have so much to take in and come to terms with.
I was diagnosed just before Christmas and I can remember going through the festive season feeling in a surreal bubble with everyone around me ‘appearing’ to be celebrating ( realise it is actually not an easy time for so many people out there). I put my ‘hostess with the mostest’ appearance on, my lippy on and default smile on my face.
Don’t forget we will be about on the forum for you to say how it really is for you. The Blood Cancer UK support line is also there for you on 0808 2080 888.
Sending you virtual hugs and thinking of you loads, be very kind to yourself.
Good morning @Chrispy@Jimbo165 and @Erica , what shocking news for you @Chrispy i am so sorry to hear that. You sound pretty upbeat but I expect that’s just a front. You probably have but have you asked about any trial drugs you can go on? I only say that because someone else I know with the same was put on some at kings college hospital a few years ago- it might be worth asking if you haven’t already.
As @Erica says , we are all here for you to support you whenever needed.
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I suspect that most of us Forum users are the same as we have become more and more used to our “new lives” with the various treatments that we are subjected to. Sorry, that was quite deep for me! 
was good fun actually. What did exhaust me was a day up to Olympia to Spirit of Xmas- it was a fab day but so much walking that it washed me out for the rest of the week/ ridiculous isn’t it that to have one fab day we have to pay for it for several days after! Am back on normal energy levels now until my next injection next Sunday!
