Hi everyone
I'm Helen and I'm 54 yrs old . Last Thurs, I was told by my gp that because some of my blood tests have been abnormal since 2017, she spoke to a haematology consultant and they recommended I should be fast tracked for an appt within the next two weeks for suspected leukaemia . I'm really shocked and worried sick . My appt isn't until 5 th June, which is a week away . I've googled symptoms , read up etc , just driving myself nuts really .
Hi and welcome to the Online Community, although I am so sorry to see the circumstance that brought you here and so sorry to hear that you are being investigated for Leukaemia.
I am Mike Thehighlander and I am just dropping past from our Lymphoma Forums to give hello.
I have lived with my rare type of Lymphoma for over 20 years so I do understand the treatment journey of blood cancer but I did not have the same treatments as those used for Leukaemia.
You do need to understand that blood cancers a very treatable, yes it can be hard work but all do-able with good results. Don't look at a blood cancer like solid tumour cancers as once treatment goes straight in the blood stream.
This is early days in your diagnosis, but once all the information is put together a treatment plan will be put in place and the noise between your ears will start to calm down.
It is so important to keep well away from Dr Google - this is the most unhelpful place to get information that is up to date, factual and supportive.
I strongly recommend that you prepare for your appointment on the 5th. The note book is the place where you record EVERY question that comes to mind. The note book goes to all appointments and when the Consultant says ‘have you any questions?’ the note book comes out.
A lot of people freeze at this point and are overwhelmed by information. So you can say ‘yes we have some question’ you go through each question one by one, making sure you write down all the answers you get. If you don’t understand something you stop the Consultant and ask them to put into language that you understand and remember the record everything they say and again if you don't understand, fold your arms and say 'explained that so we understand' You don't want to be going home after an appointment saying 'I wish we has asked ........'
The note book also helps your sleep!! As these questions often come at silly-o’clock so get the note book out and write the thoughts down and park them - it does help a lot and I would always recommend that there should be two people at appointments as two pair of ears take in far more and the onlooker will catch the stuff the patient will not hear.
A cancer diagnosis can bring a lot of stress on a family but talking with people who are on the same journey will help a lot.
There are various types of Leukaemia and we do have various specific support groups so once you know the exact type have a look through our Cancer specific forums and join the one covering your type.
A cancer diagnosis can bring a lot of stress on a family but talking with people who are on the same journey will help a lot.
Have a look through our various Macmillan Support Line Services then call them on 0808 808 00 00 to be very helpful covering Emotional Support and Practical Information. Clinical Information and Financial Support and Work Guidance mostly open 8.00 to 8.00 but check the link.
We also have our ‘Ask an Expert’ section where you can post questions to our mostly Volunteer Experts but please allow 2 working days to get a reply.
We also have our Online Information and Support Section where you will find some great pages covering the cancer diagnosis, treatment and information pages covering most types of cancers.
Talking to people face to face can help a lot so check to see if you have any Local Macmillan Support Groups in your area or a Maggie’s Centre as these folks are amazing.
It is worth putting some information in your profile. This really helps others when answering. It also means that you don't have to keep repeating yourself.
To do this click on YOUR username, look to the left and select 'Edit Profile'. Put as much or as little in your profile and you can amend it at any time - REMEMBER hit the big green SAVE before you leave the page. If you're not sure what to write you can take a look at any members profiles by clicking on their username.
We are here to help as best as we can walk this with you.
Hi again Helen,
Dr Google is a very very dangerous place that will feed your anxiety rather badly and anxiety will run you down.
If I put my condition in to Dr Google it tells me that I would never be clear of this type of cancer and it would get me in the end.......wrong!!..... as it is so out of date that it does not tell anyone that the treatments I had got me into remission.
You do need to be as healthy as possible (sounds rather an odd thing to say when you have a cancer diagnosis) when you go into treatment as some types of treatment can be hard but it is a means to an end.
Now start getting those questions down on paper as this helps a lot......and have a go at your profile.
((hugs))
Hi Helen, I totally understand what this is like and that fact that you are in this limbo stage your head is a complete whirlwind.
But the one very important lesson I have learned from my 20 years Cancer journey is that all the worry in the world will make no difference to what your Consultant will say and the journey you end up on.
Going into your appointment with the mindset that what every you are told you can face, overcome and come out the other end having conquered the challenges a cancer diagnosis brings.
Our mantra has always been “my illness DID NOT define us - our Strength and Courage did”
Keep working on that notes and have you someone going to the appointment with you?
)(hugs))
This is what the Online Community is about.
Remember to take good notes at your appointment as to what your team says as with this we can better help you through this.
Hi Helen, sorry for the delay in getting back to you, yes the noise in your head can be all encompassing but once you have some answers you will start to get control back.
I would strongly advise you call our Macmillan Support Line Services on 0808 808 00 00 tomorrow as they can give you some very helpful Emotional Support open 8.00 to 8.00 but check the link.
