Caroline E
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Follicular Non Hodgkins Lymphoma Grade 1 Stage 4 and RCVP

Caroline E
Posted by
26 Jun 2014

January 8th 2009 is the day I won't forget. It was one week away from being diagnosed with Follicular Non Hodgkin's Lymphoma Grade 1 stage 4.

I'd been treated for a stomach ulcer for many years, occasionally suffering from terrible pains and then suffering bouts of nausea. It all came to a head that Thursday; I'd had severe pains all day and was unable to sleep. Gary, my husband took me to the out of hour's Doctor who then referred me to the QE2 hospital in Welwyn Garden City, where I received morphine and was sent home. After a sleepless night of being violently sick every 2 hours, I returned to the Doctor the next morning, who then referred me back to the hospital. I was finally admitted to hospital not knowing that I was to spend the next two weeks in there, including my 47th Birthday 3 days after being admitted.

I felt like a fraud, as between bouts of pains and nausea, I felt fine. During my first week in the hospital I underwent test after test; CT scans and what felt like every blood test known to man. It was in the afternoon of Wednesday, 14th of January that the Consultant informed me that I had a suspected malignant Lymphoma and needed to undergo surgery. On the night before my operation on Friday the 16th the pains all over my body were so severe, I think every lymph node had enlarged. I really thought I was going to die. I had all the nurses writing letters to my family as I feared that I would not make it through the operation.

During surgery they removed the tumour, surrounding tissue and part of my intestine. A week later I received the news that I had been dreading; it was what they had suspected and further tests showed the cancer had also spread to my bone marrow and chest.

If this was not enough of a shock we also tragically lost Gary's Dad the day after I came home from the hospital.

On the 1st of April I started my first of eight sessions of chemotherapy (RCVP), one every three weeks for a whole day. One of my side effects was hair thinning; fortunately I didn't lose it all. I was also put on steroids. During the first week after each session of chemo I had to take twenty four tablets a day, gradually reducing until the next session where it all started again. The course of chemotherapy finished on August the 28th and a month later I was told that it had been successful. The Doctors said that if I could get through the next year and it returned they would put me on the same chemotherapy treatment again. Should the cancer return before September 2010 they would have to put me on a far more aggressive treatment.

Fortunately, it didn't return and now, 5 years on, I'm still in remission. I have check ups once every 4 months so I know they're keeping it in check. However, 3 months after being told I was in remission, I think I had delayed shock, and would get terrible panic attacks so was put on antidepressants. I am still on antidepressants which have been a Godsend for me. They, and the Lymphoma have taught me to not worry about things as I used to be a terrible stresser and worrier. I now enjoy my life to the full and hope my story will give some hope to NHL sufferers that there is light at the end of the tunnel. Cx



Thank you so, so much for sharing your experiences with blood cancer, Caroline.

You've been through so much but what's clear from the blog is that you have an enormous strength of character and being so open and honest about your experiences will really help others affected by NHL. It's great to hear that you're still in remission and doing well and I wish you all the best in the future whatever you get up to.


Thanks Caroline for your comments. I have just been diagnosed with the same. I had no symptoms at all and was picked up when I went for my routine mammogram! At present as I am so well they have decided to "watch and wait" rather than treat with chemo. I am pleased about this but feel really strange and confused and am finding it difficult to get my head around it all! Makes things worse as I am a nurse and am probably worrying too much, Also does not help as my close cousin sadly died yesterday from breast cancer. Life is a bitch at times!!!


Hi Janet. I'm so sorry you've been diagnosed but so pleased they've picked it up for you - now they can keep an eye on it so you don't have to go through chemo unless absolutely necessary. We must think of ourselves as the lucky ones - a few years ago, they didn't know half as much as they do now and how to treat it. It is so strange when it happens to you - you just can't get your head around it - and I guess I still haven't got my head around what happened, just so pleased the RCVP worked.
You just go with the flow with chemo, that's all you can do and you get through it. To be quite honest, I think it is sometimes worse for the people around you, as they don't know really how bad or good you're feeling and don't know what to do or say to make you feel better - you just get on with it - if you feel rough, go to bed, if you feel better - do things. Every day is a step closer to the end of the chemo so that you can truly recover.
I'm so sorry about your cousin too. Thinking of you and your family through this difficult time and wishing you well. Long may you remain on watch and wait. Cx


Hi Janet,

Really sorry to hear about your recent diagnosis. Diagnosis is a very confusing time and I, too, found it very difficult to get my head round everything. I had CML so my situation was different and I was able to begin treatment straight away, having the added uncertainty of not knowing when or if treatment will begin must make things even more complicated! The important thing is (as you've discovered from Caroline's blog) that you're not alone and there are lots of help and support out there to support you.

I imagine that you've been inundated with lots of information already but we have lots of resources available on the website including pamphlets which you can download and read when you're ready which might be of use:

In addition, we have a number of blogs written by people with lymphoma that might be of use to you. In addition to Caroline, Kate Giles, who is also on watch and wait, has written a number of blogs that I think would be of interest to you:

Last and by no means least, there is the opportunity for you to blog about your own experiences on the website which I have found enormously benefitial in my own experiences with blood cancer as it has allowed me to get my head round everything that's been going on. It also helped me to explain things to friends and family in one go without having to have the same conversation again and again. Here's the link if you're keen on giving a blog a go:

I hope this helps and if there's anything we can do to help, please don't hesitate to get in touch.



I completely agree that you've just got to take every day as it comes and definitely think that it's harder for those around you as there is literally nothing that they can do and they have to see you get sicker at times in order to get better which must be very difficult. Ironically, I saw this flipside as my mum was being treated for terminal bowel cancer at the same time as I was receving my treatment for leukaemia and I remember that feeling of being utterly powerless only too well.

As you say, every day is a step closer to the end of the chemo and it's so great that you're in remission now and enjoying life again. Fingers crossed it will be the same for Janet.