Recently diagnosed

Hi again Seasidelady and well done navigating across to our little corner of the community but so sorry to hear about your daughter's diagnosis - this is a hard time for you all but let's hope that being on the community may bring some light into this dark time.

For some context I have copied the text from your post in The New to Community section to help other understand you and your daughters back story.

Hello. 10 days ago my daughter was told she had Non Hodgkins Lymphoma. She has diabetes and at the same time was told she had kidney disease, anemia, lupus and fibromyalgia. Today I had to buy her a wheelchair as she is quite frail. I'm broken but have to be strong for her. My heart  is so heavy and my tummy is in knots. 

Hello. Thank you for such a quick response. I'm just feeling so sad right now. My daughter's back story is long and traumatic. She has been moved away to a safe place and we both believed life would get so much better. Now she has been dealt this blow. Today I had to get her a wheelchair and it's all become so real. 

As I said in my initial reply I have been living with and been treated for my type of incurable Non Hodgkin's Lymphoma NHL for over 24 years so I know the journey rather well.

Your daughter (and you) have had a rough journey and getting a Lymphoma diagnosis on top of all her other health issues is tough....... but at the outset it is important to understand that on the whole Lymphoma is very treatable with good results.

Lymphoma is the 5th most common type of cancer in the UK (after breast, lung, colon and prostate cancers) so lots of treatments are available and even the more aggressive types of NHL respond to treatments well....... I was stage 4 in late 2013 and look, I am talking with you today.

At this point in time it will all look so impossible to see any light....... but over my many years I have also been in a wheelchair, been in the Critical Care Unit a few times, I have been very very ill...... but I am still here living a good life....although I do have other health issues that need looking after.

So we can help you better a couple of questions:

Do you know the EXACT type of NHL she has...... this is actually very important as there are over 60 types and sub-types of Lymphoma and each type can have a different journey.

What are her clinical team saying about the way forward?....... is treatment being looked at or is she on what is called  Active Monitoring (Watch and Wait) ?

In these early days talking can help..... we can do this on here but you may also want to check out the Lymphoma Action. Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.

They also have a Lymphoma helpline on 0808 808 5555 where you can talk with someone and get support - open every week day from 10 till 3.

Do ask your specific questions and we will do our best to answer them ((hugs))

Hello. Firstly I must say that the NHS have fast tracked my daughter and after being diagnosed on the Saturday she had appointments in place for the Monday. She is  on active monitoring but actually having lots more scans and blood tests already. At the moment the NHL seems to originate from her spleen. Various lumps are being biopsied so it's not clear yet what is going on. She is very weak, in pain, tearful and angry. 

They will always do a raft of tests to make sure they have the exact type of her lymphoma identified and also her stage.

Staging in Lymphoma is rather different and unlike most other cancers like Kidney, Lung, Breast….. where a high stage number like stage 4 is a poor prognosis and outcomes...... in Lymphoma it’s not.

I was stage 4a back in 2013 and it made no difference to my outcomes.

Staging in Lymphomas identifies 1) Where the Lymphoma is presenting in the body (it can be anywhere) 2) What is the best treatment approach and best treatment type for your presentation and 3) How long your treatment needs to be.

This may sound rather simple...... but if we were talking about your daughter having say Kidney, Breast, Lung, Colon and many other cancer types we would be using rather different language with regards to outcomes.

I understand how she will be tearful and angry....... and oh I remember the many nights on my hands and knees on our lounge floor because of the pain....... but I was clearly told that regardless as to how bad this got they could turn the tide...... and they did..... it just takes time.

I see that you have read my story..... it's a challenging read but it's just one example as to how this can all be turned around.

Getting clear information is very important as once this is in place and a clear plan set the noise between the ears will start to calm down..... you may find this link helpful Questions to ask your medical team about Lymphoma.

Get a notebook and start to list all your top questions ready for her next appointment and make sure that there is someone with her at all appointments as two pairs of ears will take things in better.

((hugs))

Again, thankyou. I think I've found the place where I can get support and advice and not feel so very lost and sad.  

Keep looking for the rainbow in all this, yes there will be bumps but there is good to be found on the journey

Very sorry to hear this. Yet, love is proved in such circumstances. When the pathology report comes back, perhaps a firm diagnosis can be made. Knowing the sub-type is a great help, as the "enemy" has been unmasked. All types of lymphoma remain treatable at all stages, so there is much hope that it can be chased away and the other issues then dealt with. 

Its all very overwhelming at the start of the journey.

Trying to work out all the scenarios is just not possible. I found thinking much past the next test or result was just unhelpful there are so many what if's. In practice it's very difficult to control all the noise in your head.

Getting to the treatment stage seems to take for ever.

Try to concentrate just on the next step of your daughters path. Easy for me to say but very hard in practice.

We are mercifully given but one day at a time. The "future" must sometimes be condensed to just today, as we have enough to deal with in each 24 hours' time. On occasion, we live hour-by-hour or even minute-by-minute. This is an adaptation which we can - indeed must - make to ensure the survival our our loved one as well as ourselves. We can be of no support at all should we ourselves break down. As time passes, it will ball become more tolerable.