After finding a painless lump on my face in February 2022 which was slowly growing I was finally diagnosed with a stage 3 extra nodal marginal zone low grade lymphoma in June. Completed radiotherapy in July and due my end of treatment PET scan next week. I am 55 female who previously was fit and well so have found the whole process of a cancer diagnosis and treatment rather bewildering. Reading on this forum has really helped and I have only just felt ready to join myself this evening.
Hi LMCC and welcome to the Lymphomaniacs club. I am pleased that you have found some kindred spirits who you can walk this journey with.
I have a totally different type of NHL, very rare (7 in a million) and incurable. I have been on my journey for over 23 years now first diagnosed when I was 43 and I just had my 67th birthday a few days ago...... and yes life does goes on..... and it's a great life.
I see you mentioning Watch and Wait........ I find the W&W term to be rather negative as though nothing is being done..... I prefer the Active Monitoring as it puts a more positive light on why you are being treated like this..... yes this is classed as a treatment.
I was basically on Active Monitoring for about 14 years although I had to have skin treatments as my type of NHL was presenting on my skin....... very confusing. It is important to hold treatments until they would be most effective and make a long lasting difference.
As my 'growth areas' presented on my skin maintenance treatments had to be used to keep my skin clean so I could get on with work and life....... if had been any other type of NHL it most like would not have needed any treatments until it developed significantly.
It is amazing to think that lymphoma is the 5th most common type of cancer in the UK but many people have no idea what it is....... some people will say that lymphoma is not a proper cancer as it does not produce a solid tumours and you can't cut it out!!!!!!
to answer you questions.... "Not sure if we now have a life of this or whether we just manage to put it to the back of our minds, over time"......... you will develop the ability and mindset to not let your condition define your life going forward...... you have to take control and define your life and at the same time you will 'live' along with your cancer but not let it be the focus of attention, rather you, your life and your happiness becomes the centre of attention ((hugs)) all round.
Yes 'Demon Google" will give you a 1000 answers and only a few will be of any use. I was diagnosed pre-google so was saved the unhelpful rabbit trails.
The diagnosis part of the journey is both physically and mentally draining so yes, you are most likely suffering from the fall out from this...... but take a few breaths, keep looking to the future and be kind to yourself.
If you haven't done his already it will help you to keep a notebook (we have notebooks going back all the years) it's the place where you brain dump all the thoughts and questions that are going around in your head and this is the tool that helps you have some measure of control at appointments (Questions to ask your medical team about Lymphoma).
The back pages of our notebooks have our hopes and dreams detailed. These have been carried forward as we changed notebooks and I am very pleased to say that there are many hopes and dreams achieved and new ones added...... life can go on.
I do recommend that for good up to date information on all things Lymphoma you use the Lymphoma Action website.
Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos and run regular Lymphoma Action Support Platforms for patients...... I highly recommend these groups as there is nothing better than talking with other who have walked the journey.
They also have a great Lymphoma Action Buddy Service where people can be linked up with someone who has walked the same treatment journey. They also have a Lymphoma helpline on 0808 808 5555 where Sharon or Nic will be on hand to give you some support - open every week day from 10 till 3.
((hugs))
Good morning LMCC, unfortunately changes to appointments goes hand in hand with the Lymphoma journey.
Before you were diagnosed with your Lymphoma you would have had lumps and bumps coming and going I your body and never actually realised….. once diagnosed we become more aware but the challenge is being able to tell the difference ‘normal’ body reactions and Lymphoma.
You say about your lump….. “I half wonder if I caused it by poking around at my neck so much!”……. well I had a pea sized lump appear in my neck a few months after I finished my main treatments (over 7 years now), it was checked out and found to be a fatty lump……. but until it was checked out I would be poking it a lot and this made is inflamed and sore…….
It’s natural to check these areas but we have to be carful as the Lymphatic system reacts when it is fighting any illness or bug and our lump nodes will become inflamed (that’s their job) but if we keep poking them they get more inflamed…….. the problem I have is I often end up getting hit by my wife’s flying slipper with the words ‘don’t play with the lumps!!!!’
Let’s get you scan done and you can move on with this.
I totally understand the feelings you are having but it’s all about collecting reliable information, understanding your condition and talking with others who understand.
This group will help a lot but the resources I have highlighted earlier will be a good source of support.
I don't know where you live but do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing….. there is nothing better than ‘talking’ with others.
((hugs))
