Hi @Gillyj I reckon it is a enjoyable, stunning, yet poignant, event and really gets the message across to people you pass on the way.
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Aw yes isnât the Walk Of Light such a great event?! I did my first one last year and it felt amazing to bring awareness of blood cancers to loved ones who donated. My dadâs doing it this year too. Looking forward to âjoiningâ you out there at the end of March on our respective trails, @Gillyj and @Erica 
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My husband and hopefully my daughter will join me, I feel itâs a small thing I can do to raise money and awareness. It will be exciting knowing so many people are walking at the same time!
Gillyj
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Good evening @Gillyj, and everyone else, my apologies for the lateness of my reply, but I hope you are okay and that you havenât been âtold offâ too much for your seasonal over-indulgences! I am glad to hear that you have been able to get some more of the Pegasys stabby things though!
My headaches are still a feature (unwanted, unneeded and unnecessary!) but I am learning to live with them, just about. However the diarrhoea is still an every other day occurrence, and most especially the day after the âextraâ dose. I also seem to be coming down with more frequent outbursts of the âlurgyâ, this time in the form of a bad cough and sore throat, but am still managing to work.
My fatigue levels are dreadful now, and definitely worse than when I was on Pegasys.
The Walk of Light is something I am considering this year, especially as I hit the big 60 in March.
As always, take care, stay safe, be kind to yourself and keep on smiling.
Best wishes,
Jimbo165
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Good morning @Jimbo165 and everyone else- it sounds like youâre going through a really rough patch and I am so sorry to hear this!
When do you next clock in with your haematology department? As @liz59 says - could they try one of the other treatments for you as apart from your platelets going down ( which is very important) hydroxy is leaving you with so many side effects.
That would be lovely if you were able to do the Walk of Light- have you done it before?
Sending you lots of best wishes and hoping you have some better days soon
Gillyj
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Oh @Jimbo165 you really are going through a very rough patch.
Perhaps a chat with your specialist nurse, if you have one, or medical team is in order.
I know you soldier on, but just perhaps they might help.
Be very kind to yourself and look after yourself and please do keep us posted
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Good evening @Gillyj, @Liz59, @beredis and thank you for your kind messages. Yes, it does feel like Iâm going through the wringer at the moment, and hope (but fear that it isnât) a transient thing.
I havenât done a Walk of Light before, and will hope to do so this year, health permitting.
Hi dear @Erica, I hope that you are well and that your own health is improving. I will try and get hold of my specialist nurse tomorrow, especially as i seem to be developing some ulcers on my tongue.
All in all, 2025 is being as health helpful as 2024 was!
As always everyone, take care, stay safe, keep warm, carry on smiling and be kind to yourselves.
Best wishes,
Jimbo165
My next appointment is two weeks tomorrow, on the 31st of Jan,
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Jimbo I had lots of nasty mouth ulcers including some which made my tongue swell from the hydrea, making it difficult to eat or drink. Do contact your nurse as I was given two different mouth washes to use a protocol they called it. It was originally working but before the old ulcers were fully gone new ones were appearing, it was then decided to take me off the hydrea. Hoping you get some relief soon from all the side effects. Warm wishes.Liz59
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Stay strong @Jimbo165 - am routing for you!
Gillyj
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Good morning @Liz59 and @Gillyj , and anyone else âdipping inâ to this thread, apologies for the delayed replies; work was a bit busy yesterday and almost, but not quite, made me late for my fortnightly social gathering with friends!
The tongue ulcers (definitely only on my tongue and none on gums or cheeks - is this normal?) have eased off to some degree overnight, thankfully, but are still there, but the fatigue levels are just abysmal. I can put up with this for another two weeks until I see the consultant on the 31st to see where âweâ go from there.
I am staying strong and fully realise that there are many other forum users who are much worse off than I am, and I wish those all of them the very best.
As always, take care, stay safe, be kind to yourself and keep on smiling.
Best wishes,
Jimbo165
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Morning @Jimbo165 and anyone else.
I can tell you are feeling down, there was none of your usual humour . I really feel for you itâs so hard having zero energy. The mouth ulcers Iâve heard are very common with hydroxy, Iâve even had a few on pegasys. Iâm wondering if your tiredness will start to level off after a few more weeks. Just thinking of when I started on Pegasys how tired I was and then after about 6 months it was as if my body had got used to it and the tiredness became much less. Iâm hoping once you reach your ultimate dose that your body will get used to it too- something to maybe discuss with your team?
Stay strong 
Gillyj
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Hi @Jimbo165 that fatigue has really engulfed you, hasnât it.
I foresee that you will have issues to seriously talk to your consultant about and the problems they are causing you.
Be very kind to yourself
Good evening dear @Erica, thank you for your kind words. Yes, engulfed is a very good descriptor for how I am feeling with regard to my fatigue. It is certainly all encompassing and yet I struggle to sleep well at the same time as being exhausted! Further evidence, if it were needed, that I am a very contrary person! And yes, there will be some lengthy discussions with the consultant in a couple of weeks.
Hi also dear @Gillyj, and thank you for your kind thoughts. I only recall feeling really âzonked outâ when I was on the 135mcg dose of Pegasys, but it was never this deep a feeling. Iâm sure that things will settle down in the near future, or there will be some other alternatives offered, and tried, that may be less âstressfulâ to my bodyâs internal workings.
As always, take care, stay safe, be kind to yourselves and keep on smiling.
Best wishes,
Jimbo165
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Jimbo165 when I was on hydrea I had mouth ulcers all over my mouth and tongue. Good to hear you are getting a little relief from them. One of the mouth washes that I was prescribed had to made up by my pharmasist who had to order things to make it. Do ring your nurse if you have one, they will definitely have reccomendations. I hope your consultant takes the time to listen to you and will have some options. Warm wishes. Liz59
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Good afternoon dear@Gillyj, @Erica, @Liz59 and everyone else, I hope that you are all as well as can be.
Well after my recent âgloomyâ posts I thought I would offer some better news with this one.
I have survived my HGV Driver Stress Test this morning, having successfully completed my 9 minutes on the treadmill! The consultant, the same gent Iâve seen on the two previous occasions (2017 and 2021) and he said âwhatâs left of your heart appears to be working wellâ, potentially not the most comforting of words to hear, especially after the ordeal I suffered at the hands of the nurse before the tests.
I have had my chest part shaved and then, I kid you not, rubbed down with sandpaper, all to help the electrodes adhere better for the duration of the test! I am now very itchy in the chest department and look like I am suffering from mange now!
I just need to wait for the people at DVLA to âextract their collective digitâ and process my paperwork, although this could take anything up to another 4 weeks!
All in all though, I am in a slightly happier frame of mind now, even if the tongue ulcers are still annoying the âyou know whatâ out of me.
As always, take care, stay safe, be kind to yourselves, keep on smiling, and take no notice of a grumpy Jimbo165.
Best wishes all.
Jimbo165
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Oh @Jimbo165 great news that you survived your HGV Driver Stress Test even with âwhat is left of your heartâ.
I have to confess to a little chuckle at your expense at you having your chest part shaved, I do hope they left you symmetrical.
As for rubbing you down with sandpaper, I am sure you could have been charged extra for that service.
Look after and be very kind to yourself, you have had quite a day
Hi @Erica, sadly the nurse didnât leave me symmetrical as they donât put equal numbers of electrodes on each side!
As regards the âroughing upâ process: Iâm sure that there are certain âestablishmentsâ that will, for a financial consideration, sand any part of the body down, not that I would know anything about these types of establishments, nor where they are located, although Iâve yet to do a Google search for them!
Iâll be doing a spot of âneatening upâ later on!
As always, take care and stay safe please.
Best wishes,
Jimbo165
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@Jimbo165 - sandpaper?? 
. Maybe the nurse works as a carpenter in her spare time and got the tools confused. You poor soul, I hope your skin recovers asap. 
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Jimbo165 oh dear what an experience ,hope skin not too sore. Good news on your stress test. Warm wishes Liz59
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Good evening @PollyVera @Liz59, you never know! Iâm not sure what grade she was using but, in those areas, I am as smooth as a babyâs bottom! And soon to be hairier than a baboonâs one!
Just the stress of waiting for DVLA to do their âthingâ now.
TTFN all.
Jimbo165
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