Blood Cancer Awareness Month: Dee’s story

Hi. I’m Grace’s sister, Dee. September is blood cancer awareness month. You may have seen Laurence Llewelyn-Bowen promoting awareness of the condition on TV this week.

I was diagnosed with blood cancer earlier this year and I thought that it would be helpful if I shared my story with A&G readers.

Blood cancer affects the blood, bone marrow and lymphatic system in our bodies. The three main groups of blood cancer are leukaemia, lymphoma (the most common) and myeloma. It is diagnosed as either chronic (slow growing/indolent) or acute (aggressive/fast growing). There is no cure for blood cancer but the good news is that there are many treatments available.

The most common symptoms of blood cancer include:

  • Unexplained bruising or bleeding
  • Unexplained weight loss
  • Lumps or swellings
  • Drenching night sweats
  • Persistent, recurrent infections
  • Unexplained fever
  • Bone, joint or abdominal pain
  • Fatigue/tiredness that doesn’t improve with rest or sleep
  • Breathlessness
  • Unusually pale complexion

You should visit your GP if you have any worrying, persistent, unexplained symptoms. It could be diagnosed as another condition, but it is always best to get checked at an early stage.

I have been diagnosed with Chronic Lymphocytic Leukaemia (CLL) which affects the white blood cells and progresses slowly. I may never need treatment. This type of cancer mainly affects people over the age of 60.

I noticed that I was bruising easily, having night sweats, infections that took a long time to improve, bone pain and an uncomfortable feeling under my left armpit when I lay on my side at night.

I visited my GP who arranged for a blood test and ultrasound scan. The result of the tests identified that I had enlarged lymph nodes under my armpit. I was then referred for a biopsy of the lymph nodes which confirmed that I had CLL blood cancer at Stage 2. This is a ‘watch and wait’ cancer that doesn’t require any immediate treatment.

I was registered with the oncology clinic, given an information leaflet with details of support groups and booked in for another blood test in 6 months. I also had a bone marrow biopsy which, to be honest, isn’t the most pleasant procedure to have done! 

I have to say that my diagnosis came as a shock initially but I have now adjusted to living with the condition.

Regarding preventative measures, I have an annual flu jab and pneumonia vaccine. Because my immune system is low, I cannot have any live vaccines (e.g. shingles) or eat live yoghurt. I need to adhere to strict hygiene routines when handling animals, changing nappies, using public loos and when visiting other countries. I had to inform my travel insurers of my condition which has increased my premium but, other than that, I continue to lead a normal busy lifestyle.

I check my body regularly for any changes. I also researched complementary therapies and take a daily dose of turmeric, magnesium, vitamin D and B12. I also intend to have a regular massage and take regular exercise.

So please visit your GP if you have any of the above persistent, unexplained symptoms. It could be diagnosed as another condition but it is always best to get checked at an early stage.

#MakeBloodCancerVisible campaign

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3 years ago

I was impressed with the article about blood cancer. Its suprising how many people have this form of cancer. I myself have follicular lymphoma and ignored the symptoms for a long time, putting them down to other reasons. Awareness and early detection are so important. Neither of which i was aware of. Thank you for helping to get the message out there.

Valerie Brewster
Valerie Brewster
3 years ago

I was diagnosed with Multiple Myeloma back in 2001 at the age of 46. Came as a complete shock and was detected after a company medical. As a family we were being monitored for breast cancer because of our family history. Myeloma is a rare bone marrow disease and is not always easy for GP to consider such a cancer. Back in 2001 there were only a couple of treatments available plus Stem Cell Transplants (SCT). Treatments are a lot more advanced in 2019, but a cure has not been found. Unfortunately MM can also cause bone damage which is some cases can be debilitating and cause numerous problems. I had my second SCT back in November 2008 and to date have been in remission. The treatments can be harsh and effect your immune system which leaves you vulnerable to infections etc.

3 years ago

Hi Grace,

I was very interested to read your sister Dee’s article on Blood Cancers, but would like to point out that there is another Blood Cancer which attacks the Red Blood Cells

There are 2 levels which are Polycythemia, the early version but if not detected early can develop in to Polycythemia Ruba Vera which is incurable but can be treated and managed for quite a long time depending on how soon it is detected

I had never heard of this cancer until I was diagnosed about 18 Months ago, aged 72 unfortunately, I have the Ruba Vera version as It has been with me for quite awhile without being diagnosed

I have suffered with hot flushes ever since the menopause, which although hard to live with, were never taken too seriously by my doctor, as I was overweight ( about 12 stone at the time) advised to lose weight and dismissed.

It wasn’t until I became very concerned that my bloods were taken and sent to a haematologist, when I was at last diagnosed.

In essence my Bone Marrow was producing far too many Red Blood Cells triggered by a Mutant Jax 2 gene which cannot be switched off, this in turn thickens the blood until it becomes extremely tacky to the extent that I had to have monthly venesections and now later a chemo drug called Hydroxycarbamide plus other drugs to protect my heart

My biggest risks are Thrombosis and Heart Attack for early death.

It is possible that many women who are still getting Hot Flushes well into their sixties could be in the early stages of this disease which will not diagnosed without a blood test. I could have been diagnosed 10 years ago had that happened to me.

I hope you will be able to use this information to help others in some way, for more information on this subject, I can recommend a super guy, the senior haemetologist at The RUH Hospital in Bath, Doctor Knetchi, who is based at the “Bath Clinic”.

Thank you for a very interesting article and online magazine