I hate being irritable, agitated, itchy and uncomfortable and all this added to with the heat is driving me mad…
The only comforting thing is that I know how I’m feeling are common side effects or within the 10% bracket …
I always feared my GP and haemotologist/hospital team singing different and opposing tunes which is why I had to change surgerys and seek out the only gp I trusted.
I understand doctors in hospitals see loads of people and super busy esp with the pandemic slowing aand often don’t build those relationships we crave. Why coming on here helps to vent or empathise with others in similar situations.
Hi @Rammie18 it must be horrible feeling so irritable, agitated, itchy and uncomfortable plus the heat must be driving you mad.
I so agree with you that it is so important to have trust, continuity, confidence and a rapport with our medical teams. I can also see the many challenges our medical teams have.
Yes, venting and empathising are also so important, to feel part of a supportive community feels so good, thanks for being part of it and take care.
Hi @Erica and @Rammie18 yes, rubbish is the correct word at the moment. I completely get that hematology docs see many patients but I’m starting to question their lack of normal behaviour, ie. speaking to their patients as human beings, not as a patient number whatever that day. I know that’s hard but that’s what I have to do in my own work. I can’t just brush people of as inconvenience. My list for the next appointment is long and I am not leaving until I have answers to everything… the only reason my doctor can’t be bothered to start next chemo round is Covid. I kind of get it but my feeling is that he doesn’t want to monitor me weekly because my leukaemia is only “abnormality” in my bloods and keeping my neutrophils up with injections (to which I am now reacting pretty bad) is his way of “treating” rather than going back to the initial plan just before Covid.
Unfortunately, it has been hard to seek or change a doctor because my GP doesn’t want to make a new referral and I don’t have money to go to someone else as private patient. Maybe there is better days to come
I’m still in early days but can see this being common and a future experience for me too…
Good to hear your turning your just frustrations in making you proactive and determined to leave your next appointment more knowledgeable and feeling better than when you entered it…
I’m the total same with people… I always aim to give people 100% attention and focus when I’m with them and though this and when it can’t happen I’m honest to say today I can’t give you what you want but I’ll be able too next time…
You wait weeks upon weeks waiting for development and answers and with all the build up to be spoken too passively, narcissistic behaviour from a doctor doesn’t help you. So good for you tightening your fist and seizing control.
Hi,
This is my first post on this site (I only joined today).
I was diagnosed with CLL in 2009 and, have been on watch and wait since then. Last year I had a rapid decline and felt exhausted most of the time. My consultant had a full understanding of the situation and sent me information about the treatment he was recommending.
In early April 2021 I started treatment with obinutuzumab infusions followed by the ramp up routine with venetoclax. Apart from the very first obinutuzumab 25mg infusion when my BP severely dropped and treatment was suspended for 30 mins I have had no effects whatsoever. I feel much better and have more energy, I can walk 5 miles with no excessive tiredness. I still have a long way to go but I am really hopeful for the future.
Hi @Mickbrit and welcome to the forum. I know that this has been an ongoing discussion on the forum and I thinks it’s great that so many people are able to share their experiences. It really does help others. It’s also great to hear your have had a positive reaction to your medication and I hope that continues. It’s been a rough year hasn’t it, how have you been coping?
It has been the best year of my life, until the pandemic started I worked everyday running my small business with my two sons, I didn’t realise how much I was missing out on. Now I spend everyday at home with my wife of 55 years and am loving it. We walk together quite a bit and she supports me in every way. It has taken a worldwide disaster to wake me up to the important things in life and the business runs without me except for the odd phonecall. I’m hoping my treatment will give me many more years of happiness
It’s funny how something so challenging can make you re-evaluate life. You have definitely done that and everything sounds really positive at the moment. Really lovely to hear!
Hi @Mickbrit I am so glad that you have found us and felt that you could post.
I was diagnosed with CLL in 2003 and I am a very lucky girl to still be on watch and wait.
After the amount of time that you were on watch and wait it must have been a shock to need treatment.
All in all your treatment seems to have gone very smoothly.
Isn’t it funny that we need a pandemic to re-evaluate our lives. I have also reflected on my life and what I want to do and who with.
I am impressed that you have stepped back a bit from the family business, wow, and I expect your sons have taken over the reigns with the skills you have given them.
Your wife sounds a gem.
I have given up some commitments and decided to do DVD pilates at home in my own time as opposed to rushing down the road to do a class at the gym, co-incidentally it has saved my gym membership fee as well!!.
I am also walking 5 miles a day, but I have had to build up to that.
I had my best birthday ever last year (my 70th) and as you infer life is what you make it and good.
I look forward to hearing more from you.
That is the question I am asking myself ATM…To stay on aspirin only or take the medication. There is no cure for me…only to try and not get thrombosis. I can’t get over the idea of putting something down my gullet that I can only touch with gloves! But I have only known for sure of the genetic mutation for 36 hours, so I am trying to work out all the questions I need to ask the consultant.
Hi @Modesigns I am so glad that you have posted, you must be in shock still after 36 hrs.
Perhaps you just need to give yourself time to get your head round the genetic mutation to your Essential thrombocythemia.
I think it is such a good idea to work out the questions you want and need to ask your consultant, I need to write everything down. I have also learnt to ask those follow up questions and ask for clarification if I don’t understand something. It is a 2 way process.
We are here to support you and the Blood Cancer UK support line is there if you would like to talk to someone.
Have you got support from any family and friends?
I look forward to hearing more about you.
Really look after yourself.
Thank you Erica! I have now had quite a lot of hours to think about ET and the ramifications. I don’t see the specialist until Nov 10, and am feeling I am like a naughty school child making a decision not to take the Hydroxicarbamide yet! But I have a further 8 days at the end of this month of looking after my two youngest grandchildren and don’t want to be struggling if I have any side effects. So will hold my ground. My platelet count is 773, so no doubt I will be encouraged to go full monty on the medication. But am beginning to feel I may have choices.
I had a full hysterectomy for ‘about to metastasise’ uterine cancer 7 years ago. I was fortunate not to need radio or chemotherapy. I had, however, made my mind up that I would not take it, on the basis that I would prefer quality of life as opposed to quantity. Or preferably both…but of course that would not be in my control!
I am an artist and singing teacher, and still an occasional singer, and want to be able to give over more to painting, and possibly stop teaching singing.
Reading through the stories of others is helpful, and has given me more ideas for questions to prepare for the consultant.
Yes @Modesigns we ultimately have the final say in our treatments and there are so many different aspects to take into account.
You certainly have a full and varied life and quality of life is so important and you 2 youngest grandchildren I expect will keep you fully occupied at the end of this month.
I wonder if you grandchildren will follow you into art and singing?
Lovely pic by the way and don’t worry I am also technically challenged, who said you could never loose anything on a computer.
Look after yourself and please keep posting, I sometimes feel I get things sorted out in my mind by typing them out.
My name is Frances and I to have ET . When I was first diagnosed the consultant told me I may have to go on the same drug. Like you after reading the side affects I had to think about all the bad points. I’m 70 and would not like to take a tablet that could make you worse. I am in the watch and wait list with one Asprin daily. My last count was 649 . I think I may have had ET a long time. But only found out last year. My next app is November and I’m waiting to see what my platelets will be . I think I have made my mind up if they say stronger medication is needed ? I will wait and see . Good luck to you .
Hi @Macymae123, yes, it is always a dilemma isn’t it, pros and cons.
I always need to write down all the questions I want to ask before hand because as soon as I walk into a surgery my mind goes blank. It means that I do ask everything and those follow up questions as well. I also have to ask for clarification as I don’t talk medical speak.
Please let us know how you get on and what you decide.
Good luck to you too! It is a strange journey. A condition that is not really visible. I want to persuade my specialist to allow me to go on a watch and wait regime. I see him early in November. Hope your appointment goes well.
