myeloma uk ball 1st april · some people employ cleaners – but mixed comments about their...

For more information about myeloma and Myeloma UK, visit www.myeloma.org.uk Myeloma Infoline 0800 980 3332 Charity no.: SC026116

Issue 2, Jan 2018

Well, how was 2017? Many and varied would be the responses to that question, no doubt,

whether you interpret it in a political, social or medical way. The following newsletter items will

remind us of some of the events in the Reading Myeloma Group’s year - hopefully, triggering

memories of some enjoyable times.

Myeloma UK Ball – 1st April

Cyndy Gray’s daughter, Erica, took the very bold decision to hold a Ball in April to raise funds for

Myeloma UK and support her stepfather, Steve. Ticket sales were initially slow but Erica can

obviously be persuasive and numbers on the night were around 170. The evening started with

welcome drinks before a lovely dinner.

Various fundraising schemes were introduced on the night. Some really great prizes were on

offer in the raffle and the auction raised another very large amount of money. A live band played

in a side room and the night went with a swing.

……. Continued

http://www.myeloma.org.uk/


A last minute guest finally made things extra special: Eric Low, ex CEO of MUK, flew down from

Edinburgh. He made one of his usual excellent impromptu speeches.

All the hard work that Erica and her team put in was topped off with a fantastic amount raised,

topping the £11,000 mark. Very well done to everybody involved. What’s on for this year Erica?

Summer Walk – 8th July

Maureen Boyington made the suggestion that we might like to arrange a Summer Walk, so on

8th July we did just that. Cyndy Gray had worked out a pleasant walk near Sonning Bridge which

was around 2 miles. Then it was lunchtime and we all made our way to the Coppa Club for an Al

Fresco lunch.

After a few photos we

agreed it was worth

repeating as it was

another great

opportunity to

socialise. We plan to

have the next walk in

early Spring, maybe to

see the bluebells and

hope that you will be

able to join us. We aim

to make it suitable for

all abilities and to

accommodate different

distances up to three

miles, with tea and

cake to follow!



Windsor Trip – 16th October

The group’s annual outing this year was to Windsor Castle on 16th October. Nick Pinchin kindly

provided free transportation for those travelling through Reading Station, as well as being

‘official’ photographer.

On arrival some took the opportunity of a quick coffee break before the Castle tour, when her

Majesty was in residence. The 1992 fire had devastated some of the Royal Apartments and it

was impressive to see the fantastic restoration. Some rounded off the tour with a visit to the

stunning St Georges Chapel, a peaceful atmosphere to sit and rest for the weary. A convivial

lunch in Bills restaurant finished off an enjoyable trip.

2018 Meetings:

13 January

14 April

14 July

13 October



Blood Cancer awareness promotion

A few members of the group, namely Alan, Barry and Peter, were contacted by Myeloma UK to

take part in this promotion, along with Newton, who was nominated by Bloodwise. The idea was

to make the general public aware that every day 104 people were diagnosed with a blood cancer

in the UK. Each participant had his or her name made up into a figure to match their height. All

the names were set out in Paternoster Square, in the shadow of St Pauls Cathedral. A few talks

were given in a restaurant adjacent to the square, followed by a photo session. It was also an

opportunity to meet the new CEO of Myeloma UK, Rosemarie Finley. Cathy and Peter also met

up with some friends from other support groups around the UK. The installation ran through the

whole of the month of September.

Unfortunately, Alan was unable to attend the event but the other guys thought a photo of them

with his ‘name’ would partially make up for his absence. Not sure if he would have been able to

stand on his head, anyway …

Also, as Cathy & Peter mentioned in an email last year (2nd December), Alan provided

information about the Oxford Blood Group, a ‘virtual’ group that is looking for any patients

who would like to sign up to an email list AND/OR join a Facebook group AND/OR follow the

group on Twitter.

Meetings and events will be arranged, but for now they are just gathering people who

are interested in being involved in research- not by taking part in trials but by helping decide

which trials to do and how to do them, etc.

You can find more information about the haematology research on this website:

https://oxfordbrc.nihr.ac.uk/research-themes-overview/haematology-and-stem-cells/

and more specifically the patient and public involvement on this website:

https://oxfordbrc.nihr.ac.uk/research-themes-overview/haematology-and-stem-cells/patient-and-

public-involvement-ppi-with-the-haematology-and-stem-cells-theme/

If you have any comments or questions or wish to join, please email: [email protected]


https://oxfordbrc.nihr.ac.uk/research-themes-overview/haematology-and-stem-cells/

https://oxfordbrc.nihr.ac.uk/research-themes-overview/haematology-and-stem-cells/patient-and-public-involvement-ppi-with-the-haematology-and-stem-cells-theme/

https://oxfordbrc.nihr.ac.uk/research-themes-overview/haematology-and-stem-cells/patient-and-public-involvement-ppi-with-the-haematology-and-stem-cells-theme/

mailto:[email protected]


Reading Myeloma Group – Tips and Hints for Living with Myeloma

In case anyone missed the attachment to one of Cathy and Peter’s emails, or can’t find it, the

output of the group brainstorming on useful hints and tips for living with myeloma is reproduced

here:

Minimising Domestic Chores

Consider online shopping (more difficult at first, but then successive uses become

easier).

Batch cook multiple meals and exploit the freezer.

Buy a big enough freezer to take advantage of summer produce from the garden (or

alternatively have 2 smaller freezers).

Cook simple meals such as stews, soups, etc.

Use a pressure cooker - very good for homemade soups.

Microwave bags very useful for reducing washing-up and after cleaning.

Slow cooker good for days when you may be at the hospital for most of the day (NB –

older style slow cookers may have ceramics contaminated with lead. Newer slow cookers

are OK).

The ‘Cook’ range of frozen ready meals are liked by some in the group

(https://www.cookfood.net/).

Several people are ‘living on M&S ready meals’. Use where appropriate.

Cordless hoovers are lighter and recommended by some.

Microfibre dusters considered good. These are quite easily cleaned.

Declutter the house where possible. This results is less day to day cleaning/dusting. This

feels liberating once completed.

Don’t really need to iron many types clothes (can selectively buy no-iron garments).

Some people employ cleaners – but mixed comments about their usefulness. Depends on

the cleaner.

Don’t be so obsessive about domestic chores and prioritise what it important to you.

Coping With Chemo

Ensure that you have help managing medication. Chemo can affect cognitive alertness.

Make a chronological list of daily drugs and record time when drug is taken.

Many use a spreadsheet for listing day to day drugs required. Spreadsheet can be

photocopied to avoid re-writing the list each day. Spreadsheet can be colour coded

specific to each drug.

Dossette box made up by pharmacy but potential problem if you drop one or two pills

(since you don’t have your own supply)

Home delivery of drugs from Healthcare every 4 weeks reported to have mixed reliability.

Dexamethasone often prescribed and reported by many to have significant side effects

(feisty, difficulty with sleeping, personality changes, etc.).

Zopiclone reported to help sleep. https://beta.nhs.uk/medicines/zopiclone/

Need to plan day to day activities whilst on chemo to take account of fatigue. Take a nap

in the afternoon, and learn to pace yourself. Chemo fatigue not like tiredness since it is

with you all the time. It affects enthusiasm.

… Continued



General confusion with dexamethasone is frightening. Write down simple tasks (shopping

list, etc.). Some people avoid driving when on Dex and for 1–2 days after.

If you have a disability, you can avoid paying VAT on health related products (beds,

chairs, etc.). Usually, the retailer will supply a form for you and your doctor to

acknowledge this.

Important to discuss side effects on Chemo treatment with your clinician.

Best to bring your own food when attending clinics (less nausea).

Tonic water reported to be good for neuropathy and cramp.

Vick also reported to be good for cramp.

Holidays to Recommend

Tenerife (Los Cristianos) very accessible for people with restricted mobility. Flat, long

promenade and weather very nice in Feb/March. Can hire mobility scooters and hotels

are set up to charge these. Sensimar Hotels recommended (no noisy kids).

http://www.visitcanaryislands.org/

Warners Hayling Island, Bournemouth, Eastbourne, Brighton and Worthing all liked

Le Touquet and Deauville also liked.

Low platelets and worried about infection? Recommended to take hand wipes/gel, and

also wipe down aircraft and train fold-down table.

Ask hotels and restaurants to be seated at edge of dining room. Tell them you have

compromised immune system.

Take a copy of recent Consultant letter to GP summarising treatment and medication.

Leave a copy with family so it can be emailed. Also, scan key documents (passport, NHS

prescriptions, and consultant’s letters) so that they can be emailed if necessary. Take

meds in hand luggage.

Consider holidaying by train and book 1st Class (cleaner and less crowded). Advance

booking reduces cost. Cornwall by train recommended.

1st Class Rail also recommended when visiting London. Much less crowded.

Aix-en-Provence by train (Eurostar) recommended. Go via Ashford to avoid London.

3 year railcards good value.

Cruises recommended – only need to pack once. Good on-board healthcare usually

available.

Visiting West Ward and RBH

Try the Flavia coffee machine in West Ward. Best coffee in the hospital. Sumatra and

Italian roasts are nice strong blends. Ask receptionists to show you how to use the

machine (£1).

Street car parking in adjacent roads at Reading (Alexandra and Denmark Road) is much

easier now that new parking regulations introduced. Plenty of street side spaces available

but will cost around £2-3. Blue badges free. Hospital car parks are usually full after

9.00am and often much less stressful to park in adjacent streets. May be able to get free

parking ticket for hospital car park from West Ward, but often hospital car parks are full.

Also, they are very congested around 5pm and can take 30 mins to exit the barrier.

Phone West Ward day before to confirm that you are attending for Chemo - this

apparently allows them to order meds from pharmacy (and this reduces waiting times).

… Continued



Pharmacy can be a bottleneck (don’t get too stressed).

For waiting carers – it is quite a pleasant walk along the Riverside into the Reading

Oracle (20 mins).

Talk to CNS when there are problems (helps speed things up).

Prepare a list of questions for discussion with your Consultant (in case you forget

something you wished you had asked).

Helpful support links

My Cancer My Choices

My Cancer My Choices is a charity run by volunteers which offers a choice of complementary

therapies, supporting patients with a diagnosis of cancer.

Some of the therapies included are: acupuncture, reflexology, massage and relaxation such as

mindfulness, meditation, yoga and touch.

The aim of the service is to complement the medical treatment patients are receiving in a calm,

peaceful and welcoming environment. The centre is based at the Cancer Unit at the Royal

Berkshire Hospital in Reading and at the Bracknell Health Space.

Patients are offered 4 free treatments and it is then hoped that they will give donations for

further treatments to enable the service to continue.

Website: www.mycancermychoices.org

Phone: 01344 662906

Berkshire Cancer Rehabilitation

This is a service run with support from MacMillan and the Frimley Health, Royal Berkshire and

Berkshire Healthcare NHS Foundation Trusts, helping people affected by cancer in Berkshire with

physical, emotional and practical support.

It is available to people registered with a GP in Berkshire and offers a range of community based

services including physical activity, psychological support, practical support, self-management

and education, and social peer support.

Email: [email protected]

Phone: 01344 622909

Finally, another lovely bunch of people …




Happy New Year to all!

Reading Myeloma Support Group leader details:

Cathy Ison T: 07787 172934 Peter Ison T: 07427 650150 E: [email protected]



myeloma uk ball 1st april · some people employ cleaners – but mixed comments about their...

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