Hi everyone,
Don’t really know where to start. Last week I was just a run of the mill wife, mother, daughter, no real worries just going about my business.
Then on Monday.....my life changed, forever.
Went for an urgent PET scan at a hospital miles from me, which I knew wasn’t good....then Tuesday the consultant rang me to tell me the results showed I had lymphoma. He couldn’t tell me how bad it was, but that they had weighed up my options and it needs to be dealt with now, despite the risks posed with Covid-19.
So, Wednesday was an emergency trip to hospital for bloods & clotting and then on Thursday I had my core biopsy procedure. The radiologist took 3 samples as he wanted to negate the risk of me having to come back.
It has been a whirlwind week, a week I could never have imagined for myself, especially in times like this...but that’s where I find myself, in this limbo land of knowing I’m sick, but not knowing how bad.
If anyone reading this has any advice, help or words of wisdom they would be very comforting at this time. My children are so small (3 & 4) and the thought of not being there for them because of this virus, more than the cancer scares the absolute life out of me. How do I tell them? How can I protect them from what they are about to see? I’m so scared x x
Hi and welcome to the Online Community, although I am sorry to see you finding us and so sorry to hear about your diagnosis - this must have been a big shock to you.
I have lived with a rare type of Non Hodgkins Lymphoma for over 20 years now and I am still around boing well - please hear me that on the whole Lymphoma is very treatable.
A blood cancer diagnosis can bring a lot of stress, confusion and many questions but talking with people who are on the same journey can help a lot.
Please stay away from Dr Google - stick to a site like Lymphoma Action as it is up to date and good information.
A blood cancer is nothing like a solid tumour cancers so stage numbers are not that important although they do say what type of treatment and for how long.
There are over 80 types of Lymphoma so once you have a clear diagnosis you can join the best group for your type.
General Non Hodgkin's Lymphoma
Posting in these groups will open up your concerns to a wider group of people who know exactly what you are going through at the moment.
Follow the link I've created, join the group then introduce yourself to the group and post questions after selecting 'start a discussion' and you can also join in with existing conversations by clicking on 'reply'.
In the mean time do post on this thread until you know what you are dealing with.
When you feel up to it, it would be useful if could pop something about your journey so far into your profile as it really helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Edit Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
Keep posting as we are around to help you.
Hi and welcome to the community though sorry that you have this worry especially at this time with the virus going on too.
One thing that perhaps might help to give you some sense of reassurance is that in all cases of suspected cancer the referral is marked as urgent, it is simply the protocol they use to make sure the hospital reacts in the right way.
It might help you to look at our information on lymphoma if you follow the link of diagnosis you can see there is a section on waiting for test results - everyone here can sympathise with how difficult that can be - we even have a pet name scanixety.
There are two main subgroups in lymphoma, excitingly called hodgkin lymphoma and non-hodgkin lymphoma, the latter set having a lot of subtypes too and as such we have two groups set up here Hodgkin lymphoma and Non-Hodgkin lymphoma, it is possible you will not know yet which way yours falls but it can help to recognise sometimes what the doctors tell you.
My wife's form of cancer is very different and my son has pretty much been brought up with cancer in his life. I wish I had an answer for how you could protect your children and of course you know them better than anyone else but experience tends to show being as open with them as possible. They are very young but you might find our guide on talking to children helpful.
As for being scared - you would not be human if you were not and there would appear to plenty enough to scare everyone with covid-19, there is some really well thought through advice on looking after your wellbeing because of the virus here.
Post on here whenever you need, someone will always try to help and if you need to talk to someone our helpline is available 0808 808 0000 and can be very helpful, I certainly have cried at them in the past.
<<hugs>>
Steve
