Letter from NHS? Essential Thrombocythaemia

Gosh @Emmaco it’s totally understandable that your daughter’s feeling this way, I imagine she’s feeling quite uncomfortable now! We’ve got everything crossed everything goes as well as it can for her.
Glad you’re settled into your new home, I imagine that may have been a stressful time to move with all this going on!

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Hi there alice…
Today I have become a nanny for the first time to a beautiful baby boy…had abit of a rough labour but both mother and baby doing well. I really dont know how to feel as I didnt agree with this pregnancy initially but hes beautiful and healthy and that’s all that matters .

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Oh, @Emmaco, many congratulations to your daughter and now you have the addition of a beautiful, healthy baby boy. A new life and also new beginnings for you in your new home. Take lots of care all of you and updates please…

@Emmaco massive congratulations!! So glad that your little grandson and your daughter are doing well :slight_smile: What a relief it must be for you.
Hope you’re feeling okay today.

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Thank you …I’m not feeling well at the moment…last couple of days I’ve had earache and feel achy…I have been shivering then sweating so I think I’ve caught a chill or something. I do suffer alot with my ears…having had meningitis at 3yrs…endless grommets inserted over the years…endless ear infections over the years…I also have to wear 2 hearing aids which I’ve worn since I was 7years…I’m just resting and drinking plenty of fluids today…I think I’ve maybe got a little run down with everything that’s gone on the last few months .

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Oh I’m sorry to hear this @Emmaco! Glad you’re making sure you get some rest. I remember a while ago you mentioned that you might look into whether you have a clinical nurse specialist you can talk to? Did you manage to get anywhere with this? Do feel free to get in touch with your healthcare team if you have any concerns at all about how you’re feeling or want to talk this through with them. Take care of yourself and really hope you start to feel better soon.

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It’s so good to hear you’re coming out of your downward dip as you put it @Brenthebaker, how has the last week been for you?

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Oh, @Emmaco, I am sorry to hear that you are not feeling well at the moment, I always find if I am concerned about how I am feeling a call to my medical team to check things out can help. We are always here for you and you can always contact the wonderful Blood Cancer UK Support Services Team on 0808 2080 888 10am-7pm Monday-Friday or via email at support@bloodcancer.org.uk if you would like to. Take lots of care, lots of fluid and pamper yourself. Please let us know how you are doing when you feel up to it.

Thank you erica…I’ve just hot back from the drs and chemist…an hour and half later…I’ve got a raging urine infection…so got some abx…need to drink plenty and rest…think I’ve neglected myself of late. Not eaten today so jacket potato with tuna and sweetcorn for me.

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Oh @Emmaco so sorry to hear this, I hope you’re not too uncomfortable and really hope it clears up soon. Really encourage you to keep your healthcare team informed on how you’re feeling both emotionally and physically so that they know how best to support you. Take care and keep posting, Alice

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Oh, @Emmaco I am so pleased that you have been to the doctors and got antibiotics, your diagnosis makes sense now. Urine infections can make me feel so yukky. So perhaps now is the time to really look after and spoil yourself.

Good to hear about your daughter’s baby arriving safely. Congratulations.
I also hope you are feeling better now.
I’m doing fine right now. I think all of us including others without any health issues have had low points during the current covid situation. Knowing others are struggling can help so much knowing you aren’t alone.
My eldest daughter and her family came to our garden yesterday for a social distance visit and now being able to see family does help enormously.
It sounds like you may be able to bubble with your daughter which I think would be amazing for you both.
Take care.
Brenda

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Feeling much better Alice thank you.
Still have the odd dip but have lots of friends and family who are also having similar and recognising it’s pretty “normal“ at the moment does help. I am generally a fairly optimistic person and I do find taking things day by day rather than trying to think about any what ifs does help .
Without covid it’s much easier to “get on with normal living” with it and the restrictions put upon us can give a tad too much time to reflect!
It’s good to allow emotions to ebb and flow I think and thankfully I find I can very quickly bounce back, count blessings and move on .
I’m good thanks just think it may help others to know that they aren’t alone in all this if they do feel down or emotional from time to time .
Brenda

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@Brenthebaker @Emmaco congratulations on the additions to your families. I have 4 grandchildren and being unable to see them and our 3 children has been the hardest part of lockdown. The older two grandchildren came for a socially distanced visit a couple of weeks ago, but we have not seen the younger two since February. The youngest wasn’t even crawling, but is now walking and has started talking. Her sister is now more chatty and a brilliant mimic. Apart from the very rare thought that it would be nice to go food shopping myself, I must be in a minority about not missing being out and about.
@Emmaco I hope your urine infection is clearing up now, and that you are feeling brighter. It is so important that we practice self-care, especially when it is easy to give in at the moment. Spoil yourself a little…a warm bath with music shut away from other distractions usually does it for me. I also have two hearing aids since I suffered hearing loss 12 years ago due to chemotherapy, and have bouts of tinnitus, which make me frustrated. I once spoke with a group of hearing impaired people about blood cancer experiences, and it does bring other challenges.
I hope both new mothers are coping with the challenges during lockdown and that we all get to hug our families again soon. Be kind to yourselves

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Thank you for you kind reply. My daughter’s baby has also gone through dramatic changes since we could hold him from 3 months to over 5months he’s much more alert now and hitting new milestones. At the start of lockdown we joked that he would be crawling before we got to cuddle again . Now that’s more likely to be reality , if not walking !
We have also managed a social distance visit but won’t be as often as our other grandchildren due to distance.
I try to put all into perspective as we have friends and other family with Grandchildren living abroad - they as “normal” only get physical contact a couple of times a year if that so overall I guess we shouldn’t grumble. Much harder on the parents I think .
Daughter is doing much better now little one sleeping a bit better. They have also managed to get out of the house with baby recently which helps.
Many thanks for your reply
Brenda

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I have know got my appointment in Hospital to start on low dosage Chemotherapy, this being after 4 phone call appointments and finally having face to face with my Clinical Nurse Specialists

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Hi @KevinM, great to hear from you, please let us know how you get on with your appointment with the Clinical Nurse Specialist goes and the whole hospital experience.

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I echo Erica. Do tell us how you get on. I’ve had 2 telephone appointments in a row now and next appointment is scheduled for the 20th. Hopefully will finally get a proper review. Good luck with your treatment.

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Hope you get some answers on 20th. I’m sure you will keep us informed

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Had phone call today telling me i am going in for my biopsy on 01/09/2020

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