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Top 5 Wellness Tips

Photo by Brett Jordan on Unsplash  

Just a reminder from us here at MDS UK, to get in tune with a few tips to increase and maintain a balanced and healthy lifestyle. Remember to tailor solutions to your needs and seek medical advice from your CNS/GP to fit your individual requirements. 

Nutrition  

Most people have their favourite dish which they could easily have a few times a week, whether it’s a very green salad or a super cheesy lasagne, the key is balance. Remember to limit processed and sugary food and drinks.  

Keep fruit, nuts, and seeds as part of your intake, as well as whole grains, healthy fats, vegetables and water. It’s also important be mindful of portion sizes. 

Watch out! During the colder months, we see a variety of new hot drinks and snacks brought to the menus of our favourite places. As amazing as a “Sweet Caramel Crunch Cake and Vanilla, Hazelnut and Chocolate Wonder Latte” sounds, be mindful of the sugar in the powders and syrups – they can be sneaky! Try to opt for more herbal teas than sugar- filled temptations.  

Photo by Taylor Kiser on Unsplash  

Movement  

We’re not saying to run uphill every day, but it’s important to get moving! To support a healthy brain and improve bone and muscle strength, incorporate some movement into your daily routine. This can include walking, stretching, swimming, cycling, or badminton. It’s key to keep up with having good circulation, coordination, concentration, improved mood, and reflexes. 

Photo by Lucas van Oort on Unsplash  

Rest  

Not getting enough sleep? Make it a priority to adjust your routine before bedtime. Although it is tempting and very easy to end up watching 2 seasons back-to-back, when you’re done, it could be 4am. Yikes!  

Consider setting a wind-down alarm to remind you to start getting ready for bed. Let’s say you want to be in bed for 9pm, try to start your night routine at 7:30/8pm to give yourself enough time. During this time, instead of watching television, maybe read a few pages of a book and have tea instead of sugary snacks. 

Sleep helps with improving your memory, weight management, creativity, concentration, and the feeling of being energised.  

Quality of sleep is important too, not just the eight hours. For example, drinking too many liquids before bed could have you heading to the bathroom multiple times throughout the night! 

Photo by Rehina Sultanova on Unsplash  

Hydration  

Seeing as the body is made up of approximately 60% water, it makes sense that we make sure to get enough of it. You don’t need to be severely dehydrated in order to feel the effects. 

Constipation, brain health and levels of energy are all affected by water, try to have one litre of water a day – but avoid having a bulk of water in the evening to save you from the midnight trips to the bathroom! 

As the festive season approaches there may be more booze available at dinner than usual, but still remember that you need adequate water. 

Photo by Kobu Agency on Unsplash  

Hobbies  

This is a great way to relax at any time of day, meet new people and develop a skill. Hobbies can help you to avoid the feeling of being bored or engaging in habits that don’t support you having healthy, balanced life.  

You can search for clubs and groups in your local area to meet others with similar interests, such as chess or painting classes. You could try puzzles, model building collecting items, dance class or hiking adventures.

Photo by Rifqi Ali Ridho on Unsplash  

Defend against Neutropenic Sepsis

Photo credit Ian Taylor on Unsplash  

Neutropenic sepsis is a life-threatening condition that needs urgent treatment. If you or your caregiver suspect neutropenic sepsis, contact your medical team for advice. If it is out-of-hours, treat it as an acute medical emergency and call 999 immediately. 

What is neutropenic sepsis?

Neutropenic sepsis is a reaction to an infection, which can happen in patients with neutropenia (a low level of neutrophils in the blood). Neutrophils are a type of white blood cell that work as part of the immune system to fight infection. Having neutropenia makes it harder for the body to fight infection. Neutropenic sepsis is potentially life-threatening and needs urgent medical attention.

Patients most at risk of neutropenic sepsis

Patients are most at risk if they have:

  • severe neutropenia (defined as an absolute neutrophil count of less than 0.5 × 109/L)
  • long-term neutropenia
  • a quick decline in neutrophil count.

Causes of neutropenia

Possible causes of neutropenia include:

  • bone marrow disorders, such as myelodysplastic syndromes (MDS), CMML and aplastic anaemia
  • treatments that suppress the immune system, such as chemotherapy or immunosuppressant drugs
  • stem cell transplantation

Neutropenic sepsis symptoms

If you have any of the following symptoms of infection, you should contact your medical team immediately, no matter how minor or vague the symptoms seem:

  • Fever over 38°C, or a low temperature under 36°C
  • Chills/feeling cold
  • Shivering
  • Flu-like symptoms
  • Reports of feeling generally unwell
  • Agitation
  • Paleness (pallor)
  • Blotchy skin
  • Skin rash
  • Cold and clammy skin
  • Fast heartbeat
  • Quick breathing
  • Feeling confused or dizzy
  • Nausea and vomiting
  • Diarrhoea
  • Passing no urine in a day
  • Changes in behaviour
Photo credit by Anton on Unsplash 

What to do if you suspect neutropenic sepsis


Seek treatment immediately.  If you or your loved one show any of the signs or symptoms listed above (no matter how minor or vague the symptoms seem), it's vital that you treat it as an emergency and seek treatment as quickly as you can.  

  • Call 999 and tell them the patient is neutropenic and you suspect sepsis 
  • Contact the patient’s medical team for advice 
  • Try to keep calm  

If you feel you're not being heard, don't be afraid to be firm. Even very slight symptoms may require urgent treatment and must not be ignored as infections can develop rapidly.


The National Institute for Healthcare and Excellence (NICE) states

"Management of a person with suspected neutropenic sepsis should include implementation of the 'Sepsis Six' bundle of care within the first hour following recognition of sepsis."
Read more in the NICE Clinical Knowledge Summary on Neutropenic Sepsis 

The NHS website explains the 'Sepsis Six' bundle of care developed by the UK Sepsis Trust.

  • "The UK Sepsis Trust developed the ‘Sepsis Six’ – a set of six tasks including oxygen, cultures, antibiotics, fluids, lactate measurement and urine output monitoring- to be instituted within one hour by non-specialist practitioners at the frontline. The Sepsis Six Care Bundle as a whole has been shown to reduce the relative risk of death by 46.6 per cent when delivered to patients with severe sepsis within one hour.

Why is neutropenic sepsis such a threat for blood cancer patients? 

Having a compromised immune system is often a problem for patients with MDS and CMML, sometimes due solely to their disease, but particularly if receiving chemotherapy or immunosuppressant drugs. During some treatments, white blood cell counts are lowered, meaning the patient’s immune system is compromised and he/she is more susceptible to infection.

Neutropenic Sepsis Pathway


When they first diagnose neutropenia, a patient’s clinical team should clearly explain the risks of neutropenic sepsis, and what to do if it is suspected.  They may give the patient (or their caregiver) a form or card headed ‘Neutropenic Sepsis Pathway’ which explains the procedure which is specific to that NHS Trust. Basically this card, (or it could be a form) gives you priority access for hospital admission and treatment, should you show signs of fever or develop flu-type symptoms.  It is worth raising the subject of getting a 'Neutropenic Sepsis Pathway' with your Clinical Nurse Specialist or Consultant if they haven’t already discussed this with you, so you can be prepared in any emergency.

Neutropenic sepsis should be treated quickly with intravenous antibiotics, but time is of the essence as these need to be administered as soon as possible.
(See NICE guidelines https://www.nice.org.uk/guidance/cg151)

What steps can MDS/CMML patients take to minimise the risk from neutropenic sepsis? 

  • Wash hands regularly and thoroughly
  • Clean cuts and scrapes immediately with clean water and an anti-septic
  • Do not handle animal waste – cat litter boxes etc
  • Store and cook food carefully
  • Take care of oral hygiene
  • Do not share plates/cups or toothbrushes with other people
  • Avoid changing the water in flower vases
  • Avoid people who have infections or who are sick. 
  • Avoid crowded places like public transport, festivals and shopping centres. 
  • Wear protective gloves when gardening and doing housework. 
  • Keep a thermometer somewhere handy – ideally a digital thermometer which gives a quick, accurate reading. 

Neutropenic sepsis – Pam and Tony’s story


Our latest patient story, generously relayed by Pam (surname supplied) to MDS UK Patient Ambassador, Chris Dugmore, is a heart-rending and cautionary account about potential failings, miscommunications and unnecessary delays in getting the right treatment for Pam’s husband, Tony.  Sadly, Tony’s MDS progressed to Acute Myeloid Leukaemia and he died at home in March 2023, after three months of unsuccessful hospital treatments for multiple infections.  Pam wanted their story told to highlight the real and constant threat neutropenic sepsis presents to blood cancer patients.


Covid-19 Treatment Update

Those of you who have been told you are eligible for Covid treatments, should you test positive for Covid, should have received a recent NHS notification from Sir Stephen Powis about changes to how this treatment will be obtained;

Key points are:

  • This change takes effect from June 27th 2023
  • From this date, you will no longer be automatically contacted by NHS when you register a positive Covid Test on the NHS website
  • Instead, you should contact either
    • your GP
    • 111
    • or your hospital specialist

so that they can consider referring you for an assessment for treatment.

You can also now use tests purchased from a pharmacy or shop.


In memoriam of Fiona Pirilla

Fiona_Mamas_Pirilla

Fiona and Mamas

Fiona and I met when we both responded to a meeting set up to see if a patient support group dedicated to MDS was needed.

During this meeting Professor Mufti gave an interesting talk about MDS. At the end he asked for questions or comments, the microphone came to me and I said to the Professor that I was more than the sum of my blood work, that’s why a patient support group would be a good thing. Fiona came and found me in the lunch break and told me she liked what I said and agreed. There began a fruitful friendship that benefitted us both over the years.

The meeting ended with a call for volunteers to form a committee to get the support group off the ground. Fiona and I both volunteered. One other woman called Sharon volunteered too. Committee meetings were challenging affairs. Discussions about what the support group should do took up lots of time, as did setting up all the policies and procedures necessary for a charity. Finally, David Hall took the reins and steered us through the process.

Those first committee meetings weren’t easy. Fiona, Sharon, and I would have a drink together after and talk about the charity as we saw it.  Sharon wasn’t known to mince her words and Fiona and I were no push overs either, we kept going despite the challenges until the charity was set up with a wholistic framework of supporting the whole patient and their carers and families. There have been many people who have given so much of themselves over the years to MDS UK. We stand on the shoulders of these giants who went before us. Fiona has now joined their ranks.

Fiona showed true grit and continued to volunteer, eventually taking on the role of secretary. She maintained her committee membership until she bowed out when she needed to have her stem cell transplant two years ago.

Fiona as Secretary in the committee (Newsletter Issue 2/2012)

Fiona's Travel Tips article (Newsletter Issue 5/2014)

One of my fondest memories of Fiona came when she visited me in my office in Greenwich. I didn’t know her well at the time, she came in and I got up to welcome her and my colleagues laughed, I only came up to her navel! I took her for a meal in the greasy spoon over the road, at that time, I had no idea what a foodie she was - whatever she thought of the place she didn’t say. It was over lunch that we discovered our shared love of sport. Fiona was a highly accomplished basketball player, she was team captain for England and led them to victory in the 1991 Commonwealth Games in Edinburgh. Her old teammates described her as “a lovely shot, a formidable rebounder and someone who always demonstrated great leadership and kindness.”

Fiona was always immaculately turned out and always looked elegant. She was beautiful inside and out, she was also a highflyer in her specialised field of work. She was one of our MDS experts and her answers to those recently diagnosed carried more weight. She befriended many people through the online forums, Zoom meetings and Facebook groups. All who received a reply from her were reassured by her measured response.

Here are some words that people have said about “Our Fiona”:
Courageous
Beautiful
Kind
Funny
Always up for doing something silly
Organised
Professional
Strong
Caring
Amazingly crazy
Diplomatic
Inspirational

This list could go on and on and I’m sure those who knew her will have other words.

When she met Mamas a few new words came into her life and those were loving husband. They were soulmates and enjoyed a lovely life despite illnesses and life not being fair. They both lent on each other and it was a joy to watch their relationship from afar.

One of our last meetings before the pandemic hit was very memorable for different reasons. A few of us had gone into a nearby pub. We managed to get a table at the top of a narrow steep staircase, at one point a very drunk businessman came out of the loo with his flies open, which I noticed and nodded to Fiona. How we giggled! He found the stairs and promptly slid all the way down them ending in a heap at the bottom. Fiona as quick as a flash said, “should’ve taken more water with it.”

When Fiona told me her very sad news, I like many of her friends and family, was gutted. She had been through so much and just kept going. The thought of her slipping away was a horrible one. I sent her little messages to encourage and cheer her. One of the last ones I sent said “if someone isn’t social distancing from you, just fart” She thought that was very funny. I also sent her this beautiful poem which she told me gave her comfort.

And You Held Me

and you held me and there were no words
and there was no time and you held me
and there was only wanting and
being held and being filled with wanting
and I was nothing but letting go
and being held
and there were no words and there
needed to be no words
and there was no terror  only stillness
and I was wanting nothing and
it was fullness and it was like aching for God
and it was touch and warmth and
darkness and no time and no words and we flowed
and I flowed and I was not empty
and I was given up to the dark and
in the darkness I was not lost
and the wanting was like fullness and I could
hardly hold it and I was held and
you were dark and warm and without time and
without words and you held me

Janet Morley

 

Fiona was just a natural at everything she did. MDS UK will be worse off for not having her immense knowledge and strength behind it. She set MDS UK as a donation invitation for her birthday in February. She has done the same for her funeral and asked for no flowers. Even as she was dying, she was thinking of all those newly diagnosed and wanting to make sure MDS UK remained a vital lifeline. The money that will be raised in Fiona’s memory will help continue the charities work until hopefully one day we find a cure.

Our thoughts and prayers remain with Mamas and the family, in the UK, and Cyprus (which she loved so much), as well as all the friends, basket-ball crowd and former colleagues.

 

I think this quote sums Fiona up “when you were born, you cried, and the world rejoiced. Live your life so that when you die, the world cries and you rejoice!”

Written by our good friend, MDS UK committee member Reverend Kes Grant.
On behalf of all of us at MDS UK.
If you wish to donate to MDS UK in Fiona's memory please follow this link:

https://fionapirilla.muchloved.com/


Free donations by shopping