Hello
My name is Teresa. I am 60 years old. I joined the Macmillan site in February having been told that I had a pharyngeal tumour by my ENT consultant. I have been posting and getting some lovely helpful replies from the head and neck group. Initially I went from being fairly healthy and active, to someone who couldn’t stop crying, I couldn’t eat, I couldn’t sleep. My GP signed me off work. Two weeks later (24/2) I had a biopsy and a week later I had an MRI of the head. Over the next few weeks, I tried to keep busy and my appetite began to return a little and I put some of the weight that I’d initially lost back on. Sleeping tablets helped me when I needed to use them.
On Tuesday of this week the ENT consultant telephoned to inform me that unfortunately I had low grade lymphoma. He was very apologetic for having to give me the news over the phone but due to Coronavirus it was safer to do so. I was then informed that I would be passed over to the Haematology team. Today I received a letter with an appointment to attend the Haematolgy dept next Wed at my local hospital, quickly followed by a txt informing me that I must not go to the hospital but that I would be contacted by someone either by phone or letter.
I have some concerns in that until my biopsy I felt quite well in myself. I had problems with my left ear blocking and a little lightheadedness very occasionally. Since the biopsy, I have had a tingly skin sensation which sometimes feels like sunburn. Has anyone else experienced this before starting treatment? I have also gone back to how I felt when I was told that I had a tumour. Not eating v much and problems sleeping. My GP gave me something to help combat the anxiety but after taking the first one last night, I woke up this morning with tum upset, nausea and quite shaky. and GP has advised that I stop taking them. I know that I will have to have scans, bloods etc and I suppose that is when I might find out what type of lymphoma and stage. Between this and Coronavirus I have to admit- I am sooo scared right now.
Sorry for long post but any feedback would be much appreciated.
Regards
Teresa
Hi Teresa and welcome over to our little corner of the Community.
I have had a look back at your posts in the Head and Neck group and you received some great support and I hope that you get the same from us Lymphamaniacs.
So you will see how complicated Lymphomas can be to diagnose and is often not picked up immediately. There are over 80 types so getting this spot on is very important as this will help pick the best treatment for you.
Don’t get hung up on the stage number - I was stage 4a2 but it made no difference to how things went (hit my community name to see my story) so it is important that a high stage number is nothing like that in a sold tumour cancer....NHL is very treatable, yes treatment can be hard work but on the whole normally very successful.
You need to hang in until you get a clear diagnosis and a treatment plan as once started the treatment can work very quickly.
Ask your questions as we will help as best as we can.
You may want to put some information in your profile as this can help a lot. Click here to see how to add details as this helps everyone to see a little about you and how best to reply to you.
Hi again Teresa, looking at good reliable information is very important so so recommend looking at Lymphoma Action and stay away from random Dr Google searches.
I was the same as you in as much I was initially diagnosed with a head and neck cancer which was a shock as I thought I had an inflamed gland , I had just about got my head around that thinking surgery and all that involved, I was diagnosed with burkits lymphoma which I was told was treated by chemotherapy, I just decided that I didn’t want to know everything that could be known, I just wanted to get on with it and accept the whole process, I couldn’t change anything, I was 60 at the time , I managed to have four of the treatment cycles (100 hours of non stop chemotherapy) at home via a backpack, so I am still here, I had to give up work, but I am still here, it at time’s was a bit rotten , but I am still here, common thread running here!
due to the shielding process I am now indoors for a while , it can be a bit boring, but having undergone the chemotherapy I did nothing, went no wear , saw no one all due to protect myself from infe
ion, just try to get your head down and don’t forget there is a load of support available here and with lymphoma action
I was the same as you in as much I was initially diagnosed with a head and neck cancer which was a shock as I thought I had an inflamed gland , I had just about got my head around that thinking surgery and all that involved, I was diagnosed with burkits lymphoma which I was told was treated by chemotherapy, I just decided that I didn’t want to know everything that could be known, I just wanted to get on with it and accept the whole process, I couldn’t change anything, I was 60 at the time , I managed to have four of the treatment cycles (100 hours of non stop chemotherapy) at home via a backpack, so I am still here, I had to give up work, but I am still here, it at time’s was a bit rotten , but I am still here, common thread running here!
due to the shielding process I am now indoors for a while , it can be a bit boring, but having undergone the chemotherapy I did nothing, went no wear , saw no one all due to protect myself from infeion, just try to get your head down and don’t forget there is a load of support available here and with lymphoma action
Thank you for your results Jane,
The writing everything down is a good tip. I’m hoping that like you, once I have a treatment plan in place and discussed the way forward, I might be a little less stressed. I’m glad that you are now able to put your own experience to the back of your mind and enjoy your life again. Coviid-19 will not be a problem for ever. You’ll be out and about again soon 
Best wishes
Teresa x
