Janet T
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How do you cope with being diagnosed with Non-Hodgkin's lymphoma?

Janet T
Posted by
28 Jul 2014

Hi, my name is Janet and I am age 55 years old. I am writing this after reading and being inspired by Caroline Edmonds' and Kate Giles' blogs. I have been full time nursing since the age of 16 and have just taken early retirement and returned to work 3 days a week. I was obviously looking forward to this and spending time for myself for once and also more time with my 1 year old grandson.

Routine appointment

However, 3 weeks after going part time I received an appointment for my routine mammogram. This was a particular scarey time for me as my close cousin was diagnosed with breast cancer just over 3 years ago and sadly we were waiting for her to die as her condition deteriorated. Sadly she has now passed away on the 11th July.

I attended for my mammogram on the 12th May and after 4 weeks I had presumed all must have been clear. Unfortunately I received a letter stating I needed to attend for further investigations as significant changes had been noted since my previous mammogram 3 years ago. Obviously by this time I had convinced myself I had breast cancer and in my mind was considering how I would cope. Would I be like my cousin, who had really given up from the first day she was diagnosed, or would I fight it?

My good friend accompanied me to the hospital on the 12th June and I was astonished when the Consultant Radiologist stated he did not think it was breast cancer, but obviously could not rule this out at the time. He then proceeded to ask me if I had Rheumatoid Arthritis, TB or been in contact with any exotic diseases. He also mentioned Lymphoma 3 times during the conversation. By this time I was totally confused and being a nurse asked many questions.

Waiting for test results

There were obvious "lumps" present in both axillas, showing on the mammogram. I was unable to feel them and until that moment of now feeling "physically sick", I had felt so well. A biopsy was taken from one of the deep lumps and I was informed the results would take 2 weeks. he then informed me that the sample may need to go to Newcastle for further testing and could take another 6 weeks!!! Well I came out of that room totally emotionless is the only way I can describe how I felt. I had gone in thinking I had breast cancer aqnd came out more confused than ever!!!

It was really difficult to try and explain to my friend and we could hardly speak all the way home. I had so many emotions going on in my head. Obvious questions such as why me and why not me? What if they have made a mistake and got me mixed up with someone else? I went straight to my GP who I know really well and asked her to feel all over my body really searching for any "lumps" and also to take my bloods. She found nothing and tried to reassure me, as the bloods were normal. I could not concentrate on work and went on sick leave.

The following 2 weeks were torture!!! I was and still am constantly feeling for lumps and looking for signs of night sweats, etc. This is ironic really, as the weather has been so hot recently that I am sure everyone feels hot!  

I have so many friends and a really supportive family and I decided to inform them from the start. This has been extremely difficult as I look and feel so well physically, yet mentally I am a mess!!! The support I have received has been so overwhelming from everyone and I feel so sorry for anyone who has to possibly cope alone.

The longest 2 weeks of my life finally passed and as I had no results I contacted the hospital to make enquiries. I was informed that the Consultant needed to speak to me and I then knew it was not going to be good news, but still thought at this point it was breast cancer. That afternoon I waited for my mobile to ring but no such luck. I had 2 missed messages on my landline from my GP and I knew by her tone of voice it was not good. I saw her the next day andtook my best friend for support. I knew it was no good taking my husband as he would be so upset.

My diagnosis with lymphoma

I was right, my GP confirmed it was not good news. Still I thought breast cancer, so when she told me Lymphoma I was so shocked and thought I was hearing things! My friend and I both cried and I felt so angry, again asking myself all the usual questions. You sort of go through a bereavement stage, feeling all the emotions at once. My GP was also shocked as she had not really expected this either. She faxed the request for an appointment to be seen ASAP by the Consultant Haematologist at our local hospital.

Being a nurse I felt so impatient and decided to contact his secretary the next day to ty and speed up the appointment. I was informed this would be a week later but I was not happy, as when it happens to yourself all you want is everything done now!!! After more or less demanding an appointment that day as I knew he had a clinic, I managed to see him later that afternoon. I took my son with me as I knew he would keep me calm and remain sensible!

The Consultant was lovely, as was his nursing sister and I asked many questions as well as searching on the internet prior to my appointment to check out his "Qualifications". After all, my life is going to be in his hands so I needed to know I had faith in him. He was trying his best to comfort and reassure me, but it was'nt really working. I have nursed cancer patients too many times in my career and surely this could not be happening to me!!!

I had my bone marrow biopsy and bloods the following day and CT scan 2 days after that. After a further week waiting for the results (What a nightmare that was!!!) I saw the Consultant on the 10th july, again taking my son (God love him!). I remember thinking this can't be right, I should be always there for my child and not him having to support me in times like this. By this point I had chosen my funeral songs and everything, as you do when all strange thoughts are going through your head!!!

When I got the results I was even more shocked and confused to be told the cancer was grade 1 stage 4. I remember shouting out loud "What, stage 4. Oh my god!!!" In nursing, to me, stage 4 always meant really bad news. The Consultant and nurse tried to explain and reassure me they really don't like to use stages as this is really only a way of explaining anatomically where it is in your body. He kept saying I had to remember my cancer was found really by chance when I had the mammogram and as I felt so well and had no symptoms, he decided to "Watch and wait" but would discuss with his colleagues the following day.

God, by now I was even more confused and totally a mess! What on earth was I "Watching and waiting" for? Of course I was not desperate to have chemotherapy, but I felt as though I now had "this thing" inside me eating me away and nobody was doing anything about it so it would only get worse surely!!! No matter how much they reassured me, even my son tried, I told them although I felt well and yes I know it was found "by chance", how was I expected to deal with this mentally when I know it's there!!! I knew then that this was going to be a long emotional rollercoaster and battle.

Understanding my lymphoma

Being told you have cancer that is not curable, but is hopefully kept under control is certainly one of the most testing and scariest things that has happened to me so far. It also does not help when people say "Well if you have to get cancer, this is one of the better one's to get!" Well guess what, to those people let me say "You have it then!!!"

Since being diagnosed I have remained on sick leave as I can't concentrate on work. At times I feel guilty as people tell me I look so well, but believe me over the last 39 years I can count on one hand how mwny times I have been on the sick and so don't do this lightly! I can't understand what's happening myself, therefore I do not expect my family and friends to understand either. I have thought about antidpressants, however, I do not really want to pump any medication into my body at present which I feel may "poison" my system even further.

Silly, I am sure, but I am takink some health potions to hopefully boost my immune system. These, along with various books such as "What to eat if you have cancer", were recommende by a close friend who is currently in remission from breast cancer. I just feel I need to be doing something.

What really bugs me is when I decided to book a Spa day and a holiday and guess what, I have been told I can't have the Spa treatment and my holiday insurance will be high. I am learning fast that once you have mentioned the big "C" word everything around you changes! It would be lovely to meet someone going through a similar situation as my own to give me any tips on how to cope!!! I know we are all different and will all cope in our own ways, but every little helps i am sure. Sorry for anyone that reads this as I have gabbled on I know, but i feel better already just putting it all down in words.




Hi Janet,

First things first thank you so much for being brave enough to share your story with us. Reading it through brought me back to thinking about my own diagnosis which was a very crazy time, too. Like you I had so many questions and conflicting thoughts going off in my head and I really struggled to know quite how to feel.

The important thing as you know already from having Kate and Caroline's blogs is that you are not alone in this and there are people out there, including us, that will help you every step of the way. I imagine you've already been bombarded with information regarding NHL but we have lots of resources available on the website including downloadable pamphlets that might be of use:


We also have fellow watch and wait lymphoma patients like Kate who are regularly blogging about their experiences that I'm sure will be more than happy to talk to you having been where you are. I found talking to others in a similar position to me really helped but it's not for everyone.

Beyond that, there are a number of support services that can help you with the every day things that people often forget about like health insurance and advice on financial support/assistance that you may or may not need. Macmillan are an excellent starting point for this.

Thanks again for your blog which raises some really excellent points and issues relating to blood cancer patients which I will pass on to colleagues who are putting together a list of patient needs as part of our Prioritising Patient Need programme which hopes to establish what areas people affected by blood cancer are most in need of with the view of then looking at solutions to resolve these needs. You may have seen and filled this in already but as part of this programme we're currently running a patient survey which you may be interest in taking part in:


I wish you all the best on watch and wait and hope you have a good weekend. Stay in touch. 


Hi Janet,

You've really been through the mill haven't you but I'm so pleased that you found my blog of use. Just wanted to offer my support to you & if you ever want to talk or to get in touch plase ask LLR for my contat details. Take care, keep well & keep blogging so I can keep an eye on how you are - the mental challenge is really hard & it takes a while to get used to but I would be delighted to help if I can,

With lots of love

Kate xxxxx


Hi Janet,

I read your comments with interest. I was diagnosed with Lymphoma in November 2010. I have been on watch and wait since then and I understand the worry and stress you are currently going through. It took me a few months before my mind came to terms with my diagnosis.

In the meantime use this time to learn as much as you can about the type of Lymphoma you have. A good starting point is the Lymphoma association Freephone helpline 0808 808 5555 they have lots of leaflets and request their free magazine which comes out 3 times a year. After about a year I joined a support group no one was on watch and wait but it was interesting to learn about their experience.

Watch and wait can go on for years and for some people they will never need treatment so I just live each day at a time. Lymphoma is a chronic disease so I am planning to live for a good many years yet and I hope you too.

Finally, if you read books there is one called The Power of Now, by Eckhart Tolle its not about cancer its more of a Guide to Spiritual Enlightenment I found it helped me.

Don't forget we are all in it together.

Good Luck for the future.


I go crazy every three months when I get my blood work done. Wondering if this is the month I will have to start treatment. I am so stressed out that I am gaining weight. How do you control the stress?


Hi Donna,

funny you should say this about weight gain as I was just talking to my friends today and explained one thing I am supposed to watch out for is rapid weight loss. Chance would be a fine thing, as like you I have put weight on! I think its mind over matter as the more I am worried about loosing weight, the more I am eating just because I am afraid to loose any. However, I relly could do with loosing some. Every 3 months is like a massive hurdle and my next appointment is 24th Nov. Fingers crossed!. I need to get my head around things still and I don't know if you ever really do. However I am starting to put things into perspective as 2 of my friends have cancer. One has breast and the other just diagnosed a few weeks ago with ovarian which is really not nice at all. I guess we just have to thank god we don't need chemo yet and somehow enjoy each day as best we can. We only live once so make sure we fit in our lives as much as we possibly can and remember we are not alone in our stress. Nice to hear from you. In the New Year it would be nice to meet up with people who are in my situation who might live near me, as I think it would make everything feel more real.

Best wishes and take care
Janet x

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