Kate G
Posted by

Living with lymphoma

Kate G
Posted by
15 Apr 2014

When you think about it really, all the signs had been there for a long time but it was only when I was actually diagnosed with small lymphocytic lymphoma/chronic lymphocytic leukaemia in September 2010 that a lot of things fell into place. I’d been very tired for a long time, had occasions when my weight had plummeted for no obvious reason and I had had two previous instances of ITP, a type of bleeding disorder - in 2003 when my son was 15 weeks old and again in January 2008.

I found a lump in my groin purely by chance in April 2010 – I’d lost weight when my marriage broke up two months before and I had been taking part in a pedometer challenge at work so assumed it was a hernia but went to get it checked out by my doctor.

I had blood tests which came back clear but there was always a niggling doubt about the lump which turned into panic when I woke up one morning in August and the lump had got a lot larger. I was referred to a specialist but warned that I would have to wait for an appointment so decided to see a specialist privately in the interim.

I was advised that I needed a lymph node biopsy without delay so had the lump removed the following week. I’d already been on the internet and had self-diagnosed lymphoma but it was still a hell of a shock to be told that they were actually looking for lymphoma. I went through a whole gamut of emotions in the two weeks waiting for the results to come back and when I finally heard that it was cancer it was almost a relief, since I then knew what I was dealing with.

I haven’t had chemotherapy yet, since although my cancer at stage 3 is classified as advanced, the only symptoms I currently experience are night sweats and fatigue and I remain on watchful waiting with four-monthly checks whilst everything remains comparatively stable. The challenge is predominantly mental at present since it’s very hard to accept that I have cancer but that it isn’t being treated and I have to keep my inner “little voice” in check and remind myself that my cancer is chronic but not yet acute.

At first I was scared that I was going to die and leave my son without his mum but as time goes on, I endeavour to live as normal a life as possible and to relish the opportunities that each day brings. I see a cancer psychologist every six weeks through my health board and spend my spare time where I can trying to raise funds for cancer charities.

I’m very lucky that I’m healthy at present but wish that I had a pound for every time someone says to me that I can’t possibly have cancer because I look too healthy! There is a stereotypical view of cancer patients that is often completely inaccurate and I would love to tackle that preconception head on. After all, an obese smoker can get life insurance, but I, with my low blood pressure and an ideal BMI can’t!

Comments

Anonymous
15.04.2014

Kate you're an inspiration, thank you for sharing your story so courageously x

Anonymous
28.12.2014

Hi Kate,

I don't know if you will see this or not but wanted to thank you for being open in this blog. You look young, and remind me of my mum who has just been diagnosed, although we are still awaiting conformation of exactly what type of leukaemia she has, I suspect one of the chronic ones. Her symptoms are a lot like what you describe.
I found out on Christmas eve (4 days ago). She is very scared and doesn't know what to think, I think she fears the worst (as we all do).

Thanks again, reading other people's stories are a great comfort.

05.01.2015

Hi Clare,

Thank you for your comments - I can completely understand how your mum is feeling at the moment. If either she or yourself want someone to talk to, please ask Andy Jackson at Leukaemia & Lymphoma Research to pass on my details. I find both blogging for LLR & reading others' blogs very therapeutic & it's very important that neither of you feel like you are on your own. I can also put you both in contact with a fantastic online support group, of which I am a member, if you use Facebook.

Sending you both love,

Kate xxxxx

 

05.01.2015

I was diagnosed with CLL a year ago. Newly married at the time was devastating for myself and my husband.  It took me months to try and clear the fog that seemed to engulf me. I didnt tell my children at the time as I need down time to come to terms and accept my situation. Eventually they were told as gently as possible, one in turn..age 37,34 and 18. They all took the new differently, one through herself into research, one became insular, my elderst son wouldnt speak through shock and still finds it difficult..the youngest boy took it in his stride, trusting me to keep him informed. A year on I am slowly starting to plan again. My bloods are on a slow climb and I know I will have to undergo treatment sooner than later  so I try to carry on as normal. The worst side effects for me are the night sweats, I only sleep for an hour at a time so tireness is the worst thing for me. I do suffer from mouth ulcers and fatigue drops but they come and go. Somehow my Consultant says my level of CLL and night sweats dont seem to correlate? Does anyone else have the same issue? I know how I feel, its not connected to my hormone levels so its really difficult. One nurse says thats common but one doctor says not?

06.01.2015

Hi Minxsey, thank you for sharing your story - I remain on watch & wait & I have to say that the mental challenge is currently the worst part & the fatigue/night sweats are still my worst physical symptoms. It takes a hell of a lot to get your head around this "thing" that we both have & for which we are currently not being treated. As someone who truly understands how you feel, & if you want to get in touch, please ask Andy Jackson in LLR to give you my contact details. I'm 4 years down the "line" now & with psychological support am much more accepting of my SLL/CLL. One of the things that I have struggled with is that although my cancer is at stage 3B, in haematological terms, it's not considered that bad & this is something that I have blogged about because of the mental impact upon myself & my child. Please do get in touch - I can also put you in contact with a fantastic online support network, of which I am a member & they are an absolute godsend. Sending you lots of love & understanding xxxxx

Anonymous
27.02.2015

Hi KATE I dont want to give any false hopes but if you google
Prof Michael Lisanti at MANCHESTER uni uk you will find out about a breakthrough in cancer treatments This is very very new and was only released on 29 jan this year not many doctors know about it yet

Anonymous
01.05.2015

Thank you. Thank you for giving me a sense of reassurance that if I have cancer I can still live. I have had some prominant symptoms such as multiple swollen hard glands in my neck, tired all the time, itching everywhere especially on my head and face. I have been told i have to wait for an appointmenr to have a biopsy of the gland and I am terrified. Im terrified because I have two children under 2.

05.05.2015

Hi Mercedes,

Thank you for your comments on my blog. I'm so sorry to hear that you have been left "in limbo" whilst you wait for biopsy & I remember this awful waiting very very well. Once you know what you are dealing with it becomes much easier to handle it but either in the interim, or later on, if you would like to talk to someone who really does understand, please ask Andy Jackson at LLR to give you my details. Wishing you luck & sending love xxxxxxx

Anonymous
29.05.2015

Hi. I was diagnosed with lymphoma this morning, although not which type. I consider myself to be lucky because although a 62 year old woman, I have had no night sweats or weight loss. Also because I was able to get a very fast diagnosis any treatment should begin within the next 2 weeks, hopefully at a hospital only 20 minutes or so away. The thought of the treatment and any side effects doesn't bother me - I don't have to go to work and no longer have children living at home but I am terrified at the outcome. So any words of encouragement or comfort would be gratefully received. I am desperate to see my grandchildren grow up and not leave my lovely husband.

01.06.2015

Hi, thank you so much for posting on my blog - I'm sorry to hear that you are so worried about the outcome of your diagnosis & treatment & would like to try to reassure you. As your diagnosis was quite fast, I'm sure that you are still very shocked & this is a cycle that everyone who posts blogs can understand only too well. Please understand that it does get easier as time goes on & I personally have found acceptance of my cancer has been a great enabler. One of the major themes of my blogs is about psychological support for people with cancer & it may be worth you contacting your health board to see what help is available & I can recommend a fantastic online support group of which I am a member which may also help. You dont say what part of the country you are from but we have members from all over the UK & from Europe, Australia & the US & it is a key part of my coping strategy. If you would like to talk more, please ask Andy Jackson at LLR/Bloodwise for my details & I would be happy to do anything that I can. I'm 5 years since diagnosis & life really does go on - it's not the normal that it was before, but I have learned to handle my new normal. I have met some amazing people & made some wonderful new friends since I started my cancer journey. Wishing you love & luck xxxxxxxxxxx

v
25.05.2017

Hi, I was diagnosed this January with CLL/SLL. I am a 46 year old female otherwise fit and well. Last November I had a wisdom tooth removed. 2 weeks later felt lymph nodes up in back of head and felt like I was getting a cold. Went to GP who told me to go back to my dentist as it must be an infection (I knew it wasn't as my tooth had heeled fine). Dentist gave me antibiotics even though everything looked fine. Then over the next few weeks lymph nodes came up all in neck and under chin, armpits and groin. One side of neck and under chin is still swollen. Got an appointment to see my own GP just after Christmas (of course I couldn't get to see her any sooner!). She felt swollen node in my armpit and referred me.

I've had needle biopsy and PET scan which shows low-grade hot spots around swollen lymph nodes. Haematologist then did indepth blood tests to confirm CLL/SLL.  I had a checkup in March and my lymphocyte count had gone down - first time since 2009 (when I was blaming all my symptoms on going through early menopause).  So my diet is the only thing that I have changed.  Next checkup in June!  I've told my teenager what my condition is, but not my 11 year old - I just told her I've got something wrong with my blood and get tired sometimes!  Im finding the emotional/mental strain quite challenging sometimes!

I would recommend drinking Matcha green tea powder - helps with hot flushes!

xxx