ET diagnosis finally sinking in

[Chloe]

Thanks Duncan for your kind reply and those tips

I have found another short conversation on this forum around Angioimmunoblastic T-cell Lymphoma, so will engage with that. And Lymphoma Action UK are great, as are other charities, for easy to understand information.

Around moisturising, which I must admit I have never really done before. The Look Good Feel Better course this morning was excellent and great fun. A key thing i learned was that i should be moisturising my very bald head as much as face and body. Who knew!

[Duncan]

Aw you’re welcome @Chloe , apologies for not having more information to share. I’ve read great things about Lymphoma Action though, and would say you’re looking in the right places as blood cancer organisations tend to have the most accurate, up-to-date research. Do share stuff here if it’s helpful for you as it will be for others too.

As for moisturising our heads, well that’s another thing we have in common, although my baldness is likely permanent as it was ‘kindly’ passed down to me! I’m sorry about your hair, I know how gutting it can be. It can really change how we see ourselves, let alone others. Having fun with our images though, what a great time to experiment right?! Change is as good as a rest, as is said…

Just in case you would like to reach out to the lovely BCUK nurses, their free number is 0808 2080 888 and you’ll also see them around the forum offering their expertise.

I’ll look forward to your posts around the forum @Chloe, and please don’t hesitate to reach out if you have queries or other stuff you’d like to share.

[Chloe]

Thank you Duncan. The hair loss was a blow indeed but oddly liberating too once it was over and done with. And the turban acts as a signal to others when out - fragile, handle with care, be kind! And people are.

[Duncan]

Know what you mean about being liberating. For me, I no longer have to think about hairstyles nor hair products, and showering is much faster! I wear headwear too, while out and about to protect from the sun mostly, but obviously so helpful when it’s cold too, or when I want to hide a bit. Hats can look great, hair underneath or not! Bet your turban is great. Made me think of a cool recent contestant on that baking show who had lost all her hair but proudly went without a hat—she also spoke of the quicker shower perk!

But yes, some careful handling is definitely helpful, nicely put. I’m glad you’re encountering kind people, we need more of that!

[Chloe]

We do indeed!! Thankfully there are plenty out there.

[Jimbo165]

Good evening @Chrispy @Duncan @Erica @Gillyj @Heidi-J-BloodCancerUK @Leigh65 @RA2000 @Willow and the “new” members of this unexpected club. I hope that January has/is being kind to you all and your families too.

For myself, I am sad to report that I am under the weather with either a new lung infection or the Christmas Special lung infection didn’t entirely depart the scene of the crime and has made a very unwanted and unneeded return. I am back on the same antibiotics and steroids as last time. With a bit of juggling around with my various “dicky ticker” meds (owing to contraindications!) I am now currently on a grand total of 20 tablets daily, plus my reduced dose of 2 x Hydroxycarbamide per week and my fortnightly Pegasus jab. I think I have started to rattle as I walk now!

Hopefully the lung infection will go quickly as it does make me feel so ill at times and my chest aches from all of the coughing and wheezing I’ve been doing lately.

Still, onwards and upwards everyone.

Sorry for the “War and Peace” tale above!

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

Best wishes, Jimbo165

[Duncan]

Oh @Jimbo165, 20 tablets per day?! That sounds horrible, although I have this image of you developing pelican-like skills of swallowing them all with ease. Not a joking matter though, I’m sad that you’re so poorly on top of the Essential thrombocythemia (ET). What has your doctor suggested to help with the coughing and wheezing, perhaps you’ve tried menthol to ease your breathing? I’m sure you’ve been encouraged already but have you taken some time off to rest and give our body time to relax?

Anyway, enough nagging from me! I was thinking about you the other day, imagining all the new forum members diagnosed with Essential thrombocythemia (ET) finding this thread and perhaps also finding it very supportive thanks to your good nature. It always amazes me that for such rare MPN (Myeloproliferative neoplasms) there are so many of us here.

Do let us know how that dratted infection responds to treatment, medical or rest categories!

[Gillyj]

Oh @Jimbo165 i cannot believe that you have that chest infection back again- I know how debilitating a chest infection is- it sounds so innocuous but it really isn’t!

I’ve been meaning to check in with everyone but time just slipped away from me. I have been thinking of you all though. For some reason I’ve had a bad few weeks with low energy and tendinitis in my arm which has stopped me sleeping and functioning normally but I think I’ve turned a corner now.

I’m assuming you’re off work at the moment? You do need to take some rest time to allow your body to recover and fight this infection. I like the thought of you being a pelican swallowing your meds ( @Duncan )

Welcome to anyone else reading this thread!

Take care everyone and look after yourselves

Gillyj

[Erica]

Oh @Jimbo165 not another lung infection.

I know you are a big and brave pelican but perhaps you might have a compromised immune system and I have also been told that a lung infection can take a toll on my dicky ticker.

@Duncan and @Gillyj are presuming you have taken time off work. I want to confirm that you are off work?

Please do keep updating us and remember to take care, stay safe, be kind to yourself and keep on smiling yourself buddy x

[Chrispy]

Hi everyone. I haven’t been around for a while as i get into the chemo routine for the pancreatic cancer. I also have many tablets to take but probably not in the same count as you @Jimbo165 . we all know how your body can ache when you are racked with a nasty cough and i do feel for you and hope it clears quickly.

I have just had my 4th round of 2 weekly chemo and feel ok today. It tends to go down hill at the end of the first week then goes back up. I had big problems with the first round but after some adjustments things appear to be going ok. A CT scan is due after the 6th to check the chemo is working and we have booked a 10 night cruise back to the northern lights and and the lovely cost of Norway. Our daughter is coming too and the aim is to make lots of memories. My oncologist is firmly in my corner and thought it was a great idea. I do have needles to take with me as i need to boost the white blood count and that is 4 daily injections. They asked if i was ok injecting myself which made me laugh after all the ones i have done in the last few years.

Anyway all the best to you all and hope your aches and pains ease quickly

[Erica]

Oh @Chrispy you have really been going through it too.

A 10 night cruise to Norway sounds wonderful and great that your daughter is going as well. Yes, make loads of memories.

I look forward to hearing all about it, one suitcase for you and one for your meds !!

Look after yourselves

[Gillyj]

Hi @Chrispy thats such a great idea to go On a cruise with your family- even though it’s lots of injections I’m sure you will have a wonderful time! Glad to hear that they’ve sorted out your chemo so it’s not affecting you as badly- your team sounds brilliant!

Looking forward to hearing all about it

take care everyone

Gillyj

[Jimbo165]

Good evening @Chrispy @Duncan @Erica @Gillyj and everyone else following this topic, I hope that you are all as well as possible. Where to begin!

Chrispy, at the risk of sounding very hypocritical, I really do hope that you are taking the utmost care of yourself during all of your rounds of treatment and that your CT scan goes well on the 6th of February, coincidentally the day I am next back at LRI to see one of “The Team”. I hope that the Northern Lights put on a good show for you all when you are away on your cruise to Norway and hope that you will have a wonderful time as well as make so many fantastic memories for you all to cherish.

Duncan, I’m not sure about any pelican-like skills of swallowing as I’m not overly good at taking tablets, but am getting better with practice! I have a very poor “gag-reflex” as I only laugh at funny jokes! As to time off, I have managed to have a half day off work this week and have been “allowed” to finish early both yesterday and today, indeed I was “sent home” by my suddenly benevolent Branch Manager, a slightly odd experience! Your kind words do mean a lot and I thank you for them.

Gillyj, yes, I am starting to take it personally now with all of these various gum and lung infections that keep cropping up. I hope that your tendinitis is getting better, rather than you getting used to it, and that you can regain some quality sleep time once again. Work wise, I refer you to the above paragraph. It doesn’t help, work wise, when there are only two hgv drivers at work and the other one is off for family reasons and my “work ethic” makes it very difficult for me to “let the customers down” and yes, I know, that this is entirely of my own doing but, it is what it is.

Dear Erica, I am fairly sure that my immune system has mostly “left the conversation” these days but I try my best to avoid obviously “ill people”, in fact I rarely look in the mirror at home now as that is one “ill person” I can easily avoid! And if I leave my glasses off, I don’t look too bad either. Work wise, I refer you to the paragraph up above. I very much hope that you are as well as can be and are looking after yourself as much as possible.

Thank you all for your kind words and thoughts, as well as your suggestions.

As always, take care, stay safe, be kind to yourselves and keep on smiling.

Best wishes,

Jimbo165

[RA2000]

@Jimbo165 Really sorry to hear that your lung Infection has came back I hope you get better soon. Is anyone on pegasys? I know @Jimbo165 Is, I’ve been on them for about 7 to 8 weeks now and starting to feel like I’m less fatigued now so fingers crossed, was just wondering what everyone’s experience of being on pegasys Is. I have developed a pain In left side of my tummy past few days feels like I’m winded, my consultant did say I could develop an enlarged spleen so I’m hoping It Isn’t that, obviously I’ve been googling things which I shouldn’t do. I hope everyone On this topic Is keeping well as can be

[Jimbo165]

Good evening @RA2000 and everyone else, I hope that you are all as well as can be. Thank you for your kind words. Just a little update regarding “moi”! I have now been signed off work for the next fortnight after completing two courses of steroids and antibiotics, seemingly to no avail. I have also been contacted by one of the “new” Community Diagnostic Centres and will be having a chest X-Ray done tomorrow lunchtime. What happens after that though…!

I’m pleased to hear that your own fatigue levels seem to be easing off (I’m not envious at all! not one little bit!!) and hope that that continues to be the way for you. Yes, I too live with some discomfort in the abdomen, most likely from either my enlarged spleen or from my (apparently) enlarged liver. It can make finding a comfortable sleeping position difficult.

It is perfectly natural to Google things and as long as you only use reputable sites then you should be okay.

As always, take care, stay safe, be kind to yourself and keep on smiling.

Best wishes, Jimbo165

[Erica]

Hi @Jimbo165 and all.

I am glad that you have been signed off for the next fortnight, if you know what I mean, I have been really worried about you. Please do let us know how the chest x ray goes.

Perhaps this the next 2 weeks is a good opportunity to really look after and be ever so kind to yourself ‘cose you are very special xx.

[Duncan]

Aw @Jimbo165, sorry that you’re still poorly, and after those antibiotics. It’s great that you’ve got time off though, like @Erica says. You have some time to rest, and it’s literally doctor’s orders!

I’ll keep my fingers crossed that the x-ray goes well, it’s good to check for stuff to rule it out. Maybe some treats are in order after, hey @Jimbo165!

[Jimbo165]

Good afternoon @Chrispy @Duncan @Erica @Gillyj @Heidi-J-BloodCancerUK @Leigh65 @RA2000 @Willow and everyone else following this particular thread, I hope you are all as well as can be.

Thought I’d give a wee update on happenings here in the world of Jimbo165.

My Chest X-ray results have come back okay with no signs of pneumonia, thankfully, and the cough could take up to 2 months to subside fully, so Nurse Time will be occupied for the foreseeable future.

I’ve been at LRI this morning for my “routine” appointment, although with a slight difference. I normally have my blood tests done a couple of days before my hospital visit so as to minimise my time and car park fees! However, and owing to the antibiotics and steroids I had recently been on, the course finishing last Sunday, I spoke with my CNS and she advised me to delay the blood work for as long as possible to get a more accurate and up to date set of results. I, therefore, made my way to LRI for 8:20 this morning, but was still 12th in the queue for the leeches! I then had a chat with Macmillan Nurse to see if there was any help available for an elderly, single man, who works full-time, of which, sadly, there appears not to be. Such is life.

My platelet count has risen again, by over 100 to 493 (still some way shy of my personal best of 1200+), although my ALT liver function has improved to be within touching distance of being within the normal range! So for now I am to stay on the same treatment regime of 2 Hydroxycarbamide capsules per week and 1 Pegasys injection every two weeks. I have a return visit booked for 7 weeks from now.

I did also get a very thorough examination from the Consultant, Dr Fiskin, and her medical student who both, individually and separately, poked, probed and prodded my abdomen with special emphasis being applied to my spleen area.

My Consultant was sorry to hear that I have been ill but was glad to hear that I have finally taken some sick leave from work, so that makes it unanimous with my daughters and my Forum Friends ALL agreeing that I needed to do take the time off of work to “get better”.

As always, take care, stay safe, be kind to yourselves and carry on smiling.

Best wishes, Jimbo165.

[Duncan]

Sounds almost like good news @Jimbo165! I love that phrase you used, Nurse Time. It really can sometimes be what we need, some timely rest. I’m really glad you’ve been checked thoroughly, and I hope you’ll let yourself enjoy your remaining time off now! Nurse Time would approve.

[Gillyj]

Gosh @Jimbo165 i am so pleased that you have finally given in and taken some time off work to recuperate and recover- well done you!! As @Duncan says it sounds fairly positive news on your bloods front, and what’s a few platelets here or there between friends - it still sounds a fairly reasonable level!

Rest up and get your strength back

Gillyj