Hi - renal specialist who was investigating kidney leaking protein called me 5:20 friday to say it wasnt kidneys - i probably had blood cancer. Urgent referral to haematologist. I am absolutely beside myself plus feeling awful- tired and nauseous. Ive not felt well now for 2 months. I feel im in rapid decline now. Im scared.
Hi @Ela789 ,
I can totally understand you feeling scared, that’s a lot to get your head around this weekend. I’m so sorry you were given the news like that on a Friday and then seemingly left to it? I can’t begin to imagine how you must be feeling. This forum is a safe place to vent, rant, say exactly what you need to say. I imagine your thoughts and emotions are all over the place. I know you will get loads of support and other replies from the forum volunteers and the nurses but im thinking of you and sending hugs.
Hi @Ela789 it is marvellous that you have found us so quickly.
@AllyBally has already given you a great welcome and I would like to echo that.
I cannot imagine how you are feeling just left in limbo over the weekend and till your haematology appointment.
I am definitely not a medical person bur my experience has been that some medical people are so used to speaking medical speak that they do not realise the impact it can have on patients. I am not surprised that you are beside yourself and scared…
We are here to support you as is the Blood Cancer UK support line on 0808 2080 888.
The main thing is that you get a diagnosis either way…
I have had a blood cancer for 19 yrs so please just take it a day at a time.
Be ever so kind and look after yourself I was in shock for a long time and please keep posting
Thanks so much - im feeling really shell shocked and scared of all the uncertainties up ahead. Good to hear that its been 19 years. Id kinda written myself off this weekend
Thanks for your message, Alex - very much appreciated. Feeling a bit in limbo xxx
Although the thoughts of writing yourself off are so, so natural, I came straight home and wrote my will and funeral music.
Perhaps now you have found us it might be best to avoid the internet
Have you got any support?
I have found since my diagnosis I have spent a lot of time waiting around for tests, results and appointments and it is horrible, my mind just keeps whirring around.
Just give yourself time to come to terms with your not knowing.
Yeah the internet has become a bit of an unhealthy obsession One of my main concerns is that i have no appetite, i don’t enjoy any food. I eat because i have to. Difficult to disentangle anxiety from potential illness symptoms. I have been walking the dog for an hour every morning but even losing interest in that. Just want to lie in bed all the time. Im usually very active- yoga etc Not sure what can attributed to what in all of this. I feel Ive gone way downhill since friday ….
As @Erica said, do you have any support; friends, family, partner with you or near you? It sounds like you could do with someone to be with you at the moment or perhaps it may be worthwhile calling your GP this morning or the blood cancer support line here to maybe talk things through?
Please don’t battle through this alone, there are people who can help.
I imagine your anxiety will of course be sky high. Anxiety by its nature will halt your appetite and have other effects on you too. When I’m anxious I stop eating and want to withdraw from the world too.
Will be thinking of you today.
Please look after yourself and let us know how you get on today.
Thanks Ally and Erica - im so fortunate in that ive got a wonderfully supportive family and friends. My husband is unbelievable even tho he must be going through his own nightmare. Thats exactly how im feeling - dont to eat, just withdraw from the world. I am forcing myself to eat nutritious food…
Going to call gp this morning and husband is going to get on to the hospital as well as exploring other options. I guess its essier if i stay local tho wouldnt mind a couple of opinions Will keep you posted- many thanks once again xxx
Hi @Ela789 as @AllyBally says your natural anxiety can give you lack of appetite and feeling of just wanting to duvet dive.
We are such complex beings trying to unpick what is attributed to this and that condition is so difficult.
I was being treated after a gynae op and the consultant said ‘I have never had to tell anyone this before, but you have Chronic lymphocytic leukaemia (CLL), I can do no more for you go and see your GP’, so I know what that ‘limbo/shock/ the end is nigh’ feels like and that was at Christmas time.
Actually your dog making you go out for a walk might be just what you need to give you some fresh air.
I am so glad that your husband is unbelievable and yes, he is probably going through similar thoughts and feelings as you.
Perhaps just think of nutritious food as fuel which you need to keep your body going like a car at the moment.
Yes, your GP sounds a good call to make.
So does your Yoga, I am a Pilates Girl myself and I am fitter today (at 73 yrs old) than I have ever been in my life.
As for other options, yes, staying local makes a lot of logistical and practical sense, it also depends on your locality and services. I have been very happy with my local hospital.
Perhaps just slow down and see what the situation and diagnosis, or not, is first.
One step at a time and everything will fall into place.
You now both have your forum family enveloping you and supporting you , be very kind to yourselves.
Thanks for ur message Erica. Im finding them really helpful and supportive. That must have been such a shock to you getting the news in that way. I just wanted to give you an update. Saw my lovely GP today - she checked my lymph nodes - all ok, no enlarged spleen or liver. Dr Google had suggested that i had an enlarged spleen but i was pointing to the complete wrong bit of my stomach …. She managed to grt hold of one of the haematologists who had a look at my results, said it was blood cancer but didn’t look like it was acute so no hurry. Current wait time for appointment is 4 weeks. Since ive got bupa i thought i may try and fast track it. However GP strongly recommends i stick with NHs as Thats where the expertise lies as well as the cutting edge treatments. I live in Edinburgh and the hospital has a very good reputation in oncology. Im a wee bit calmer - went out for a walk this afternoon. So guess best option is to wait on my appointment coming through. Will probably need a bone marrow biopsy which scares me somewhat but i guess this is only the start of the scary treatments. Shall now try and get my act together and stop the regular duvet diving …… thanks again for your time and support xx
Oh @Ela789 what a lovely sensible GP you have, a bit more reliable than Dr Google if I may say so.
When I was diagnosed I certainly did not know the difference between chronic and acute.
I have Chronic lymphocytic leukaemia (CLL) and I have been a very lucky girl and always been on ‘watch and wait’ or ‘active monitoring’ which means just being tested at regular intervals to see if there is any progression or not.
Personally I have never had a bone marrow biopsy, but I believe they are used more these days. I think that the unknown is scary.
My Dr said that I am more likely to die by being run over by a No. 65 bus than of my Chronic lymphocytic leukaemia (CLL).
There are quite a few of those buses around here.
Another saying used is that you are more likely to die with it than of it.
The other brilliant thing is that you know you are likely to have to wait at least 4 weeks for an appointment so you have not got to accost the Postman every day.
This also gives you time to get your head round things.
We are always here and so is the Blood Cancer UK support line on 0808 2080 888.
You might also like to write down a list of questions you want to aske at your appointment.
I attach a couple of links from the Blood Cancer UK website for you
I’ve just been told I have blood cancer | Blood Cancer UK
Blood cancer: mind and emotions | Blood Cancer UK
I find walking is good for me too and I am just off to Pilates now.
Be kind and spoil yourselves and please do keep posting I look forward to hearing more about you.xx
Hi Erica - sorry for the radio silence. I had my first consultation yesterday and i have mylenoma. Not the easiest news Consultant seemed positive that we’re talking a time frame of ‘years’ but it will be a long and bumpy road starting with chemo with a view to killing all cancer cells after which it will be a stem cell transplant. Were feeling a bit shell shocked. Not much more to say at this point . Humbled at the support of my family and friends. Hoping i can do this !!!
@Ela789 do you mean Myeloma if so it’s not cureable but very treatable
I’m 6 years into my myeloma many others are living with it for 20 years
The latest chemo regime DVD is having good results with Stem cell transplant
I had DVD with Second Stem cell transplant and have the best results than with my first line treatment and Stem cell transplant
Just so you’re aware from the beginning myeloma is relapse remit which means you will have time when the myeloma is treated and it’s not doing any damage. Relapse is when myeloma is no longer controlled by treatment which happens to all myeloma patients
I had nearly 5 years good partial remission with my first transplant
I’m now 17 months very good partial response from my second transplant
Everyone’s myeloma journey is individual and no two of us are the same
Thanks so much for your reply. I need to hear these stories right now!! I only found out yesterday and so waiting on body scan and bone marrow biopsy to determine how the chemo or what combination of chemo will be administered. Its all very frightening. Hopefully ill calm down a bit soon …… the consultant was good and explained about thr remitting and whatever the word is (sorry my brain is a bit fried) - both he and several medic friends are emphasising the advances in research- apparently there are 2 new ones coming out this year.
So glad youre so far down the line - your story is very inspirational to us newbies. Thanks again for your time xx
The unknown can be very frightening and will take a couple of days to sink in
Were you given a booklet if not Myeloma UK is a great resource of information as a newly diagnosed.
Simply put The bone marrow test will give a percentage of myeloma cells
Mine on diagnosis was 75%
On relapse it was 23%
It shows how active the myeloma is
The PET scan will show where it’s active
An MRI will look for lesions in the bones
Back in 2017 there was no Daratumumab it was still in clinical trial stages I believe now it’s seems to be the first line of chemo in newly diagnosed patients
Its second line in relapsed myeloma.
It’s very well tolerated too
My newly diagnosed second mum is 13 weeks into Dara and is having great results her protein is down to 1 and her light chains in normal range
So yes there are new treatments advancing all the time.
CAR T Cell therapy is available in clinical trials and hopefully will be available as a treatment at some point in the near future
It’s ok to not be ok too be kind to yourself give yourself the space and time to take it all in
Write down any questions you think of
Thanks so much. This is all very helpful to my husband and i. We’re feeling quite lost even though we have the amazing support of my family and our friends. I just want my treatment to start. Im starting to imagine aches and pains thst werent there a few days ago!!! Im not the most patient of patients. I need to wait on an appointment for the scan amd biopsy - I find the waiting difficult xx
Right @Ela789 now you have a diagnosis and a consultant that really discusses things with you.
No, not the easiest news as you say, and after I was diagnosed the shock and coming to terms with it took me a long while.
I would say just be very kind to yourself and try and take things one day at a time.
I attach a link to Blood Cancer UK’s page on Myeloma Myeloma | Blood Cancer UK
I would say just be very kind to yourself and try and take things one day at a time.
Not many of us are patient patients, but I have found there is a lot of waiting for appointments, tests and results.
If you would like to talk to someone the Blood Cancer UK support line is there for you on 0808 2080 888
Look after yourself and please keep posting.
Thanks Erica - ill take a look at these links xx
While your waiting could you and hubby get out for a coffee a walk at the beach or countryside or whatever you enjoy while your waiting for dates
Catch up with the chores you want to get done that won’t cause you pain
Batch cook favourite meals
When treatment starts it will be a week of bloods consultant app and treatment amongst that you may not feel like doing much after treatment and repeat
Try and make the most of these last few days without treatment
Keep talking and supporting each other your hubby sounds super supportive.