Your most annoying cancer side effect

@Jimbo165 woken up, coffee and porridge in already, thought, wow toilets facilities this morning ( long distance drivers and overnight campers will get this :wink: ) opened door and fell out, 6’3" hits the tarmac just as hard as you did as a kid falling off your bike :face_with_head_bandage: Finger looks like I have Rudolf’s nose sewn on the tip.

This may sound strange, but it is comforting to know I am not alone with these distracting side effects.

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Oh @clickinhistory sorry to hear about your digit.
You are right you are certainly never alone on here.

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@Erica the joys of reliving your childhood is not all it is cracked up to be, gravel rash is as painful today as it was in the past, including digging out gravel from your hands lol.
Tired and cold will be just out the top ten this week @Jimbo165 unless we get a huge social media led download spike.
One that bubbles up regularly is feeling tight and just wanting to be able to stretch out. Memories of the drawings of Alf Tupper doing his ground reenergising stretches spring to mind. ( My Dad was the buyer and reader of the Victor, we were lucky if he brought it home from his office, I know, childhood parental neglect and abuse :wink: )

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Having Polycythaemia vera (PV) for the last 3 years, I find the other issues of pulmonary hypertension and active gallstones cause an overload. There are lots of days when I do not cope, I find simple tasks beyond me. I am constantly tired and this makes me tetchy and miserable. My bloods are good and I am able to tolerate. Hydroxycarbamide. Double Base cream enables me to stop the itching.

I detest formfilling, necessary for benefits and blue badge and driving licence renewal. age U.K. are a life saver when it comes from filling. Today the sun is shining a ver rare occasion, I look out at apricot tulips, white hyacinths, violas and daffodils and feel lucky I can still enjoy them.

I feel very sorry for my family and friends who have to cope with my constant fatigue and depression, I can just about cope with my personal care but shortness of breath is getting worse curtailing the time I can spend on any. activities.

Marylin

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Oh, @Marylin thanks, yes, I do not deal with what personally stresses me now and yes, form filling can suddenly become all too much.
Sometimes it feels that organisations make the forms convoluting and difficult trying to deter people from getting their entitlements
Yes, shortness of breath affects so many different areas of our lives doesn’t it.
I am picturing your lovely garden as I post this.
Look after yourself xxx

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@Marylin form filling is a pain. Talking to the trauma phycologist about this the other day, how the Polycythaemia vera (PV) affects the brain differently. From the creative side being free to roam still, while the act of focusing on bureaucratic forms or “petty” questions, tires us out so quickly.

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OK I know my work schedule has been some what chaotic this week, but the annoying C side effect this week is the stop start sleeping, but falling asleep while thinking of something and waking up an hour or two later still thinking those thoughts and not realising you had fallen asleep. Oh with arms feeling dead weight on waking up!

So this weeks line up is;
1: Food on and off love affair is on marriage number two.
2: Right brain focusing oh look a book on Outer Mongolia eagle hunters…
3: Ripple effect on our own lives and that of others.
4: Clumsy has slipped on @Jimbo165 cake crumbs and has fallen one place.
5: Time theft due to sleep sheep rustlers.

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Hi
I am glad I am not alone in not coping with all of my life, and form filling is the last straw that breaks this camel’s back. Partly due to having to find info, letters and other material to support my claim.

Today I have barely kept my. Eyes open, feeling so utterly weary. Each one of my issues causes fatigue and I am under four consultants. So I suppose. I am quadruple fatigue. My oxygen stats are low eighties which doesn’t help.

I am desperately trying to find something positive and uplifting to write. However I know I will have to contact the DVLA when my diagnosis of pulmonary hypertension is definitely confirmed. More forms.

I’m off to bed now and hope to see some sun and blue sky tomorrow. Marylin

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@Marylin I hope you are enjoying the blue skies this morning.

I have found another one this past couple of weeks, repeated splitting and breaking finger nails grr.

Time for an update on last weeks top 5;
So this weeks line up is;
1: Food on and off love affair is on marriage number two.
2: Right brain focusing oh look a book on Outer Mongolia eagle hunters…
3: Ripple effect on our own lives and that of others.
4: Clumsy has slipped on @Jimbo165 cake crumbs and has fallen one place.
5: Time theft due to sleep sheep rustlers.

Giving the time of year there is no change at no.1

  1. Easter egg and hot cross bun in love orgy
  2. Healing times for cuts, bruises and nicks.
  3. Tiredness fell over clumsiness and gained one place.
  4. Clumsy is struggling with the packaging of the Easter eggs and paper cuts.
  5. Looking well is up for a Bafta this year.

Enjoy the weekend

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Clickinhistory sorry to hear about your nails, I have the opposite problem, mine our so hard and strong that I cannot cut them my self and. Have to pay £25 monthly to get them cut.

My negative list is

Fatigue

Exhaustion

Unpredictable tremor,causing spillages and dropping items

Sudden dryness of skin, if I scratch I get ccoverrd in. Bruises.

Extreme shortness of breath-pulmonary hypertension.

Being told how well I look when I feel overwhelmed by all my ailments

Positive

I am surviving. - just.

Pills keeping aches and pains manageable

I can still drive.

My understanding friends and family

My Princess Irene tulips vibrate with colour as does a pot of deep blue irises, such a pleasure.

I have yet to find any blue sky, just grey day after grey day, but I live in hope.

Marylin

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Oh @Marylin I really agree with your list and your tulips and iris’s sound glorious.
Look after yourself

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Good afternoon @clickinhistory, and everyone else, hope you are all well and enjoying the slightly better weather.
Apologies for the recent “comms blackout”, work has been stupidly busy, with extra emphasis on the stupid part of stupidly! :rofl:

To reinforce @clickinhistory listings,

  1. Fatigue is still far and away my most annoying side effect
  2. Poor quality sleep, i.e. non-restorative sleep so that I wake up feeling tired every day.
  3. An almost total lack of appetite, the occasional carvery and cake excepted!
  4. A new one: unexpected gum bleeds, for no obvious reason. I was in the shower the other day when the last one occurred.
  5. Aching feet, especially my heels, from waking until falling asleep later on, and probably during sleep too!

I still manage to work full-time, or full-time and a half yesterday!, and my humour keeps me in good cheer, thankfully, and this forum and its members keep my sane as well as grounded in reality, so a huge thank you to each and every one of you.

Take care, stay safe, keep smiling and be kind to yourselves.

JImbo165

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Hey there @Jimbo165, I was reading something on MPN Voice earlier stating that research shows folks with MPNs can develop bleeding gums (and other sorts of bleeding) from having low platelets. I’d say it’s something to raise with your doctors.

Also, slight aside about aching heels, but I had plantar fasciitis for a while from hiking in the wrong kinds of shoes. Since wearing trail shoes with much more bounce to the soles the heel pain has gone! I’d recommend Hokas or Altras as they have super comfy soles, but understand they can be a bit pricy. Adding insoles that support the instep really helps too.

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Good evening @Duncan, our Overseas Correspondent, hope you are keeping well. Yes, I’d read about bleeding gums elsewhere too, but fortunately this episode didn’t last too long thankfully. It is on my list of questions for later this month when I see one of the Consultant’s team.

The foot issue is very much a “hit and miss” affair as there seems to be no pattern at all as to when it will strike next. It’s also in both feet at the same time too, but slightly worse/more painful in my left foot. This also is on my list!

I have some comfy, springy, memory foam insoles in my work boots, but I suspect that yesterday’s 12 hour shift didn’t help matters.

It’s all part of life’s rich tapestry, I guess.

Take care and stay safe and well done on your Walk of Light, San Francisco Bay Area.

Best wishes,
Jimbo165

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Oh @Jimbo165 life’s rich tapestry!!
Keep those pearly whites smiling and be very kind to yourself

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Good evening dear @Erica, I hope you are keeping well.
Thank you for your kind words and for always being so supportive to all BC Forum members and users. As our Overseas Correspondent (@Duncan) has said before, you are an inspiration to us all.

Take care and stay safe.

Jimbo165

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Oh you’re already doing great stuff for your feet—I think anyone doing a 12-hour shift might get rather achy feet! I remember how knackering it was when I did double shifts working with children back in the day :sleeping:

Thank you for the congratulations! It was almost too enjoyable doing the Walk Of Light, like I’d cheated somehow to receive such generous donations! Looking forward to next year already :hiking_boot::ocean::mountain:

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Jimbo 165 Sorry to hear that you are having trouble with your feet and gums. Take care of yourself. I find if I ring the cancer nurses at the haematology dayward always have good advice.

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Good morning @Liz59, and everyone else, hope you are keeping well and haven’t been blown away by the wind! Thank you for your kind response. It’s amazing just what the body can adapt to when “yet another” problem (or two!) appear, uninvited, on the scene.

As always, take care, stay safe (and well anchored today!), be kind to yourself and keep on smiling.

Jimbo165

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Jimbo 165 It’s fairly blustery here too. Don’t forget to be kind to yourself also.

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