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Living with and Beyond Cancer

Christine, a pancreatic cancer survivor, looks into the camera and smiles. She is wearing a red sparkly long-sleeved top and has brown cropped hair.

Christine’s story

By | Awareness and Early Diagnosis, Living with and Beyond Cancer | No Comments

After experiencing persistent symptoms that weren’t normal for her, Christine was diagnosed with pancreatic cancer. Here, she tells her story and explains her advice for anyone experiencing something similar.

Towards the end of January 2019, my entire body began to feel itchy. I tried everything to stop it, from soothing sprays to creams and antihistamine tablets,  but nothing worked. I wasn’t in any pain anywhere, but I felt maybe a little more tired.

On 1st February at around 3 am, I couldn’t stand the itching anymore, and asked my husband to take me to A&E, where I’d hoped they’d give me a strong antihistamine injection or some tablets to help. However, the young doctor who saw me insisted on doing a blood test, which I think saved my life.

Christine, a pancreatic cancer survivor, looks into the camera and smiles. She is wearing a red sparkly long-sleeved top and has brown cropped hair.

Christine credits a blood test in A&E for saving her life.

After waiting a while, I received my results. The doctors said there may be a blocked liver duct, but I’d need more tests to confirm this. I was allowed to go home but would return for CT scans and MRI appointments. On Monday morning, I felt ‘out of sorts’ and fainted at home. Martin, my husband, took me back to the hospital, where they kept me in for 5 days to do some tests.

Over the next few weeks, I had various other tests done. I also started being jaundiced and my urine was much darker than usual. It was evident something was seriously wrong, so an appointment was made to see the consultant at Castle Hill.

The consultant at Castle Hill confirmed I had pancreatic cancer and was faced with two options. I could either have a Whipple’s procedure, which would give me at least another five years, or do nothing, which would leave me with five to eight months.

I returned for further scans the next day and would be back in hospital on the 13th March for surgery on the 14th. I brought an overnight bag with me for my scans, so the consultant decided to keep me in until the next day for my pre-op tests. However, whilst on the ward, I needed rehydrating, and was kept in the hospital until my operation.

My operation, which required two surgeons, lasted for 10 hours and I spent 10 days in the Intensive Care Unit (ICU) until finally arriving home on the 5th April.I felt isolated without the ward staff but was very well looked after by Martin and by friends who would do anything for us. Some kind friends had given us a hospital bed to use at home, and Martin made a bedroom for me in the dining room. I actually stayed downstairs until January 2020!

When I left the hospital, I was given a prescription of Creon tablets, which is a medication to replace the enzymes usually made by the pancreas to break down food. I have to take these tablets with everything I eat.

I also began chemotherapy in June 2019, which I had for six months. I recovered well from this and my main problem since has been with my digestive system. I have learned to live with this, however, and I am hoping to speak to the dietician again to see if anything can be done to ease my digestive problems.

I am now 20 months on from the major surgery and delighted to say I am in remission.

I still see my oncologist every four months to have my bloods checked, and then every six months for a CT scan.

If anyone has anything ‘different’ happening to them, i.e. it’s not normal for you, seek professional advice. Although it pays to talk things over with family and friends and look online,  you can’t believe everything you’re told or see on the internet. Speak to your GP as they have the experience and knowledge to help you best. Staying positive helped me with my recovery, so I’d always recommend that!

Symptoms of pancreatic cancer can include:

  • the whites of your eyes or your skin turn yellow (jaundice), you may also have itchy skin, darker pee and paler poo than usual
  • loss of appetite or losing weight without trying to
  • feeling tired or having no energy
  • a high temperature, or feeling hot or shivery

For more information, go to https://www.nhs.uk/conditions/pancreatic-cancer/.

Headshot of Margaret Allbones, a cancer survivor who shared her story with us. She is smiling, looking slightly to the right of the camera, and wearing a black jumper. She has cropped blonde hair and is wearing small gold hoop earrings.

Noticing what’s normal: Margaret’s story

By | Awareness and Early Diagnosis, Living with and Beyond Cancer | One Comment

Mum, grandma and former Medical Secretary Margaret didn’t experience any pain before her cancer diagnosis but still booked an appointment with her GP. Here, Margaret describes her cancer journey and highlights the importance of noticing whether a symptom is ‘normal’ for you.

My cancer diagnosis came as a shock. I felt well. I didn’t have a sore throat or any pain in my mouth, and I wasn’t experiencing any problems swallowing. The only thing different was that I felt like I had a hair in my mouth and needed to swallow more often. The symptom was persistent, so after a couple of months, I used a mirror to look into my throat, where I saw what looked like a tiny eye or shiny circle, and immediately booked an appointment with my GP.

Headshot of Margaret Allbones, a cancer survivor who shared her story with us. She is smiling, looking slightly to the right of the camera, and wearing a black jumper. She has cropped blonde hair and is wearing small gold hoop earrings.

Margaret’s symptom was persistent, unexplained, and unusual for her. Talk to your GP if you’re experiencing a symptom that is any of these.

My GP referred me to a consultant who, within 10 days, organised for me to attend the hospital as a day case and have the tonsil removed. Another 10 days after that, I saw the consultant again to receive the results of a biopsy on the tonsil. The consultant informed me it was cancer, more specifically, a lymphoma. My official diagnosis was a first-grade non-Hodgkin large cell lymphoma that had been caught early.

A couple of weeks later, I went for chemotherapy. In the end, I only had two sessions of the chemo, as it made me feel really unwell, and the results proved another session wouldn’t benefit me that much. Instead, I had radiotherapy a few weeks later.

Since my cancer diagnosis, I’ve tried to remain positive and keep looking forward. My role model has been my younger sister, who was diagnosed with pancreatic cancer six months before my own diagnosis. Like me, she didn’t have many symptoms – only an itch for a week or so. She has since had an operation and is now doing well.

I lost a lot of weight because of my tonsillectomy, chemo, and radiotherapy, and have experienced other side-effects such as a sore throat, mouth, and neck. Most of my other side effects have disappeared. I’m slowly getting back to a healthy weight and have been drinking nutritional supplement milkshakes to help. I began to experience extreme tiredness after undergoing x-rays, blood tests, a colonoscopy, and taking steroids to treat a cough I’ve had since my chemotherapy. I’ve stayed in touch with my Macmillan nurse, a dietitian and my GP practice nurse throughout everything.

I have COPD and diabetes, which have both made me feel weak, but since beginning to take long daily walks on the seafront, I’ve felt so much better. I still have the cough, but I’m using medication and a Flutter to manage it. I’m also having B12 injections and taking iron tablets to reduce my tiredness.

I have been continually checked on by health professionals, and the questions they asked ensured I informed them of anything and everything that was not normal to me. They never made me feel guilty about asking questions or getting in contact a lot. Everyone was helpful and caring. They let nothing go unchecked, which is what revealed my B12 deficiency – it may have gone unnoticed for some time otherwise.

My advice to others in my position would be to stay positive and see the future as something to look forward to – always keep the little things in mind. You can’t expect every day to be good so listen to your body. If you need to sit down or sleep – do so.

Always remember to talk to your GP about any problems or symptoms concerning you and get help when you need it!

If you’re experiencing a persistent ache or pain, unexplained weight loss, or an unusual lump. Speak to your GP. Remember, if it’s persistent, unexplained, or unusual for you, it’s important to get it checked.

Support Group Saturday: Pam and HER Breast Friends

By | Living with and Beyond Cancer, Support Group Saturday | No Comments

Hull and East Riding Breast Friends, known as HER Breast Friends, is a small local registered charity founded in 2005 by two ladies, Jan Jones and Liz Drury, who at the time were both undergoing treatment for breast cancer at Castle Hill Hospital. While Jan and Liz are sadly no longer with us, every day the impact of what they achieved is felt by everyone at HER Breast Friends and beyond. Here, group Trustee and breast cancer survivor Pam tells us about everything the group does.

About the group

Jan and Liz realised there was a need for a group that didn’t focus on the disease, but more on the emotional and practical side of things. They wanted to use the experience they were going through in a positive way, to help not only themselves but others that would undoubtedly follow. The pair initially began by fundraising for comfy chairs in the breast care unit and oncology ward at Castle Hill Hospital. As more people became aware of their activities, the group grew and HER Breast Friends was formed.

The group’s aim is to create a positive environment offering encouragement and friendship, whilst also providing practical help for those going through their cancer journey.

From initially meeting in each other’s’ houses, larger meeting places were sought. Various church halls became our meeting place until 2011, when we acquired our own suite of rooms at the Chamberlain Business Centre on Chamberlain Rd, Hull. In 2018, the Charity moved to a more modern and accessible premises. The Octagon on Walker Street in Hull is where we’re still based today.

The charity is run by volunteers and supported by one full-time member of staff funded by grants. All of the aforementioned have been affected by breast cancer, either personally or through family, friends, or colleagues. After all, you do not have to have a diagnosis of breast cancer to be affected by it.

Membership for the group is open to both men and women and costs just £5.00 for the year. This money goes towards the cost of facilities, services and activities we run. As a member, you get a say at our AGM about how the charity develops, but you do not have to be a member to access all our facilities.

We are not medically trained and we do not offer medical advice about breast cancer or its treatment, but we are able to suggest and signpost to the people who can.

Our aim is to create a positive environment offering encouragement and friendship, whilst also providing practical help for those going through their cancer journey.

The butterfly was chosen as the symbol of the charity; while it means many things in different cultures, hope and transformation emerge as a common theme. The butterfly appears on our merchandise and can be found around the various rooms within the charity.

Possibly someone’s first point of contact with the charity would be if they received one of our patient gift packs, which we provide to the hospital for those having undergone surgery for breast cancer. It’s a small bag of toiletries and treats along with a cushion, currently made by our craft group and other voluntary groups. The cushion is ideal to rest your arm or head-on, but they come into their own when travelling home for seat belt comfort. More recently, we’ve also included our FUN stress-relieving dammit dolls and an information folder to let people know that they are not alone, we are thinking of them, and we are here if they need us.

Our support also includes a wig bank, which we’re currently providing via a home delivery service, our Buddleia therapy service, a bra service, a Wednesday craft group, dance night, and the occasional trip!

Our flagship event is our Pink Pamper Day, which caters for up to 100 people with a diagnosis of breast cancer to be thoroughly pampered, attend a variety of workshops, enjoy a lovely lunch and as in previous years make some long-lasting friendships. 2020 is the first year since 2006 that it has been cancelled. 

Usually, our premises are open Monday to Friday, from 10 am until 4 pm. for anyone to pop in if they wish… the kettle is always on! However, we’re currently closed due to COVID-19.

Since the start of the pandemic, we have engaged our members and supporters in various activities such as a weekly quiz provided by Simon, one of our Trustees, and a bakery corner with various delicious recipes provided by our members.

Our Buddleia therapists provide a calming distanced Reiki session each Tuesday at 3 pm. This can all be accessed via our website and social media pages.

Our Craft Group has continued their amazing work from home, providing the heart cushions, dammit dolls, seat belt cushions and face masks.

Unfortunately, activities such as the dance class and monthly meetings, which often feature guest speakers, have now come to a halt, along with all our fundraising events in what would have been our celebratory 15th year supporting local people affected by breast cancer!

About Pam

In November 2010, I was going away for a weekend with friends. I had lost my hair through chemo and therefore thought it would be a nice idea to get a wig. Little did I realise how expensive wigs can be! During a hospital visit, my husband came across a HER Breast Friends information booklet. They were a support group with a difference and of course they had a Wig Bank!

I contacted the charity and met the lovely founder, Jan Jones, who came with a variety of wigs for me to try. I must admit I had fun with my best friend trying them on!

I said earlier that HER Breast Friends is a support group with a difference. I think of these groups as people sitting around a table discussing their illness, but I couldn’t have been more wrong! The first meeting I attended, I thought I was in the wrong place, as all I could hear was laughter. Everyone is so positive.

I began volunteering with the charity by helping at events, but when a Breast Awareness Team was developed in 2012, I quickly became involved. After all, if I didn’t know the signs to look out for, I imagined there were others who weren’t aware too.

The team (all volunteers) deliver talks to groups such as WI’s, ladies groups, schools – basically anywhere that we are asked! These talks cover the signs and symptoms to look out for and help encourage the uptake of breast screening while also dispelling some of the myths and fears that may accompany breast cancer and screening in what has been described as a fun but informative manner on a serious subject.

We also hold events at various locations, such as leisure centres, shopping centres and markets.

Ten years on, I am now a Trustee of the Charity and lead the Breast Awareness Team. This year, due to COVID-19, our talks have been halted, although I did take part in my first webinar talk to the Hull Women in Business Group. Online is currently the way to go but myself and the team much prefer that face-to-face social contact, which we will hopefully, soon be able to get back to!

 

Find out more about the group at www.herbreastfriends.org.uk

You can also find them on Facebook, Twitter, Instagram and even YouTube.

Contact the team by email on generalenquiries@herbreastfriends.org.uk or call 01482 221368.

Image containing a blue background with 'Cancer Support Group, Share and Learn event' written in white text across the centre of the image.

Free Share and Learn event for cancer support groups within Humber, Coast and Vale region

By | Cancer Alliance, Living with and Beyond Cancer

Humber, Coast and Vale Cancer Alliance (HCV CA) is inviting cancer support groups to take part in a free online share and learn event.

Support groups from Scarborough and Ryedale, Hull, Vale of York, North Lincolnshire, North East Lincolnshire and the East Riding of Yorkshire are invited to take part in the free event which will take place via Microsoft Teams on Wednesday 4 November 2020, 7pm – 8pm.

Recognising that many support groups across the HCV region have either paused or adapted their services as a result of the coronavirus pandemic, the event aims to provide local groups with an opportunity to share experiences, ask questions, meet similar groups from across the region and learn about the work of the Alliance.

The Cancer Alliance brings together all the organisations that commission and provide cancer services in the HCV area, enabling effective and co-ordinated partnership working to improve patient experience. By working in collaboration with local cancer support groups, the Alliance aims to ensure their work is informed and influenced by patients, carers, the public and other key stakeholders.

Alison Cockerill, Macmillan Living With and Beyond Cancer Programme Manager at HCV CA will be leading the online event and said: “Since the start of the coronavirus pandemic, we have spoken with several cancer support groups from across our region that have either paused their activities or have had to adapt in order to continue supporting those living with and beyond cancer.

“As an Alliance, we want to ensure our population is aware of the health and wellbeing support available and that groups have an opportunity to network, share and learn from each other within a supportive environment.

“We will also be using the event to update local support groups about some of the exciting work that is taking place across the Alliance, for example the recent launch of a new NHS England and NHS Improvement Quality of Life Survey which recognises that quality of life (QoL) outcomes are as important to patients as survival and asks patients ‘how are you doing?’.

Representatives from Macmillan Cancer Support and Cancer Care Map will also be attending the event, as the Alliance continues to raise awareness of health and wellbeing support from across the HCV region and beyond.

To find out more about Humber, Coast and Vale Cancer Alliance, visit www.hcvcanceralliance.org.uk or click here to sign up for the event.

If you are interested in adding your cancer support group to the Humber, Coast and Vale directory, please email karenlindley@nhs.net.

Image containing a blue background with 'Cancer Support Group, Share and Learn event' written in white text across the centre of the image.
A photo of non-alcoholic gins provided to the ladies at the Gyn and Tonic cancer support group. They're in small bottles, one is pink and one is blue.

Support Group Saturday: Gyn & Tonic

By | Living with and Beyond Cancer | No Comments

Gyn & Tonic is the name of the Gynaecology support group for North Lincolnshire and the surrounding area. Here, Pat Chennells, Macmillan Information Facilitator at Northern Lincolnshire and Goole NHS Foundation Trust, tells us a bit about what they do.

The group has been meeting every month since January 2018 at Robert Holme Hall, Scunthorpe General Hospital. The group was established

A photo collage of different Christmas wreaths made by the women at the Gyn and Tonic cancer support group. There are images of women holding the wreaths and images of the wreaths on their own.

The group hosts seasonal craft activities – including Christmas wreath making.

following a consultation with ladies with gynaecological cancer led by the Gynaecology Clinical Nurse Specialist and the Macmillan Information Advisor.

The name of the group was chosen by the members who attended the first meetings, obviously a play on Gin & Tonic, the Gyn for gynaecology and tonic because that is what the ladies wanted the group to be. A safe space where they could get to know other ladies going through the same things, a space where they could say exactly how they felt, a space where they could get professional advice in an informal way and, above all, a space where they could laugh and have fun.

There is laughter in all of the meetings, sometimes some tears too, but there is always time for a private chat with another member, the CNS, or the Macmillan Information Advisor.

A photo of non-alcoholic gins provided to the ladies at the Gyn and Tonic cancer support group. They're in small bottles, one is pink and one is blue.

The group have even enjoyed non-alcoholic gins during one of their meetings!

The group meets on the last Wednesday morning of every month and the programme is quite varied with craft activities, quizzes and speakers usually a topic chosen by the ladies. There is also lots of tea, coffee and biscuits and if you’re really lucky… cake! We have even had a gin and tonic tasting session, non–alcoholic of course!

During the COVID-19 pandemic, we have started meeting using a virtual platform and whilst it has been good to see each other the ladies are desperate to meet each other face to face again as soon as the current situation allows. While they’re better than no meeting at all, virtual meetings simply don’t replace the face to face group meetings we’re used to and we can’t wait until we can safely get together again.

 

 

For more information about the support group, contact Pat Chennells. Telephone 03033 305372 and leave a message. On mobile, you’ll catch Pat on 07858 924 283 or email nlg-tr.MacmillanInfoandSupport@nhs.net.

For information on our other support groups, visit https://hcvcanceralliance.org.uk/support-groups/

A hand wearing a blue glove holding a needle representing the flu vaccine.

North Yorkshire and York residents reassured that they will be vaccinated against the flu

By | Living with and Beyond Cancer | No Comments

With flu season fast approaching, NHS North Yorkshire Clinical Commissioning Group and NHS Vale of York Clinical Commissioning Group, along with local authorities want to reassure eligible patients that they will get their free NHS flu vaccination this year – and health partners are working together to ensure people in high risk groups get vaccinated.

The flu vaccination programme in North Yorkshire and York will begin at the start of this month. To reduce the amount of pressure on the NHS, this will be rolled out in phases, with children, care home residents and high risk groups vaccinated first.

GP practices will start sending letters out to eligible patients classed as ‘high risk’ from this month with details on how they can receive their vaccine. Alongside this the school immunisation service will contact parents and carers of children in years reception to (and including) year 7 for consent for their child to have the flu vaccine in school.

High risk patients will continue to be contacted by their GP practices and vaccinated throughout September and October. This includes: residents in care homes or other long-stay care facilities, people aged 65 and over, pregnant women, front-line health and social care workers, carers and personal assistants for someone with a Personal Health Budget, those living in a household with people who have shielded and any people in a clinical risk group (aged from six months to less than 65).

This year, in addition to the normal flu vaccination programme, 50 to 64-year-olds who do not have a health condition putting them at risk of the flu will also be eligible for a free flu vaccine later in the year. GP practices will keep this group of patients informed and are likely to invite them for a flu vaccination in November and December once all other higher risk eligible groups have been vaccinated.

Dr Bruce Willoughby, GP Clinical Lead for Primary Care and Population Health at NHS North Yorkshire CCG, said:

“Flu vaccinations are required every year as there are different strains of the influenza virus in circulation each season; immunisation is the best way to help protect people from flu. It’s a virus that has the potential to leave people very poorly, lead to hospitalisation and sometimes even death.

“We know that clinically vulnerable patients who have been shielding during the Covid-19 pandemic are still extremely worried about having contact with anyone outside of their household ‘bubble’, but I want to reassure those patients that practices will have arrangements in place to ensure they can administer vaccinations in a safe and bio-secure way. There will be strict safety measures in place, including social distancing, appropriate PPE, and strict hygiene protocols.”

A headshot of Dr Nigel Wells, Clinical Lead for the Humber, Coast and Vale Health and Care Partnership. He's smiling and wearing a black suit jacket over a wh

Dr Nigel Wells, Clinical Chair of NHS Vale of York CCG added:

“I would urge anyone who’s in a clinical risk group to take up the vaccination offer when they receive the letter from their surgery. It will give them a much-needed layer of protection and there is absolutely no evidence that getting a flu vaccine increases the risk of getting Covid-19.

“There are many benefits from flu vaccination and preventing flu is always important, but in the context of the Covid-19 pandemic, it’s even more vital we each play our part and do everything possible to reduce illness and protect NHS and health care resources for those who need them the most this winter.”

Dr Lincoln Sargeant, Director of Public Health at North Yorkshire County Council said:

“Having the flu vaccination is one of the most important steps people can take to protect themselves and others from flu and we encourage everyone who is eligible for a free NHS flu vaccine to have one this year, gaining early protection from influenza this winter.”

Councillor Carol Runciman, Executive Member for Health and Adult Social Care, said:

“This year it is more important than ever that we protect ourselves and each other by getting a flu jab. We are working with partners to ensure people are able to get a flu vaccination as quickly as possible and to ensure high risk groups have access first.

“We will be sharing information throughout the coming weeks and months and I would urge everyone to play their part.”

Patients who do not fall under any of the eligible categories for a free vaccine should not worry as they will also be given the opportunity to be vaccinated at local pharmacies. However, it is crucial that those patients identified as ‘at risk’ are protected first.

For more information about at risk groups and what counts as a clinical ‘at risk group’ go to https://www.nhs.uk/conditions/vaccinations/who-should-have-flu-vaccine/

A team of people standing in front of Hope House Support group building.

Support Group Saturday: Hope House

By | Living with and Beyond Cancer | No Comments

Back in 2012, at the age of 36, Joanne was diagnosed with breast cancer. She underwent a lumpectomy, chemotherapy, radiotherapy, oophorectomy and was given a drug called Anastrozole for ten years. Here, she tells us why she began a support group and what Hope House has done for her local community.

 

Even with a supportive family, close friends and three small children, my breast cancer diagnosis made me feel isolated. I wanted to ask questions and talk to others in a similar situation. I was 36 and expected to meet others like me but most people I came across were a lot older. They were amazing people but I wanted to see how others in my position had dealt with this, especially concerning my children. I could cope with anything thrown at me; I just didn’t want my children to have to cope with it. During chemo, I used to daydream; I even planned a place called Hope House where people could come together for support.

In January 2014, Bosom Family Support held its first meeting. A local piano school kindly donated £600 for me to get the group going, and we met in a local Village Hall, each with a cup of tea and a slice of cake, ready for a chat. Ten of us met that first night, shedding tears of all kinds as we told our stories one by one. This was the start of our support group.

Reflecting on the session, I knew we couldn’t emotionally process that much crying every time, so we introduced activities. We did everything from Easter bonnet parades, flower arranging and book folding to golf, decoupage and art classes – never forgetting the tea and cake! To date, we have supported around 80 ladies. Some people stay for years, some people come and go as they need us, some people move on after our support and the group simply isn’t for others.

Since then, we’ve gone on to support a group for children called Liferafts. It’s based on the same ideas as Bosom Family Support but specifically for children whose parents have or have had cancer.  Over the years, our meetings have become more about friendship. We’ve gone on bus trips, had afternoon tea, and even formed a choir.

The constant throughout everything was that support was there for the many challenges that people face after a diagnosis of cancer. When the hospital appointments stop, our comfort blanket is removed, I see our group as one that fills a gap. We are not medically trained, nor experts in cancer, but we have an understanding; we know that it is not only an emotional battle but a physical battle as our lives return to this new normal. For someone to be able to say “I get that”, “I understand” or “that happened to me, too” makes us instantly feel less alone. As a group, we have experienced highs and massive lows, and the support that this group has given to one another, especially during those lows, has just been incredible.

A team of people standing in front of Hope House Support group building.
A colourful room used to host a support group for children whose family members have or have had cancer. There's a table football table in the middle of the room and it's surrounded by comfortable sofas, colourful rugs and toys for children of all ages.
Four women from the Bosom Family Support group standing together and smiling. They're behind a table with cakes and biscuits on.
Dozens of large white carrier bags lined up. They contain meals for families ready to be handed out during the UK coronavirus lockdown.

That daydream of Hope House was never far from the back of my mind and, last September, we successfully opened our doors to welcome even more people from the local community. Hope House is always buzzing with different activities held there; the cuppa and chat, the treatment room, the counselling room and the children’s room. It is a warm, welcoming and friendly place to visit. It’s a hub where we can help all members of the family after a cancer diagnosis – cancer doesn’t just affect the patient.

Like many others, our world came to a standstill back in March and I really struggled to think of how we could continue to help others. We did the online quizzes, discos, but knew those having active treatment for their cancer would be struggling as they had to shield at the same time.

We came up with the idea to deliver a nutritious meal to families once a week so they had one less thing to worry about. At the beginning, we thought we could run it for around four weeks, but we’re now into August and have provided over 2800 portions of food to approximately 73 families. We’ve had fantastic support from The Wortley Hotel, local Lions Groups, Rotary Groups and other local businesses and are now able to fund the meals until the end of September.

More recently, we’ve been able to reopen the doors at Hope House to resume counselling and are planning a phased return to normal from September. We can’t wait to get back to providing support to anyone in our local community affected by cancer because we know that no one should face cancer alone.

 

For more information about our group, please contact Jo on joanne@hopehousebfs.org. You can find the group on Facebook here.

For a map of cancer support groups in the Humber, Coast and Vale area, click here to head to our directory.

Carol Miller, founder of York Haematology Support group and Acute Myeloid Leukaemia survivor smiling and holding an award from the Lymphoma Association.

Visiting my GP surgery during COVID-19: Carol’s story

By | Awareness and Early Diagnosis, Living with and Beyond Cancer | No Comments

York Haematology Support Group founder, Carol Miller was diagnosed with Acute Myeloid Leukaemia in 2004. Since her diagnosis, Carol has used her experience with cancer treatment to help others going through the same thing. Here, Carol shares her experience of attending her GP surgery and hospitals for tests during the coronavirus pandemic:

In October, I was admitted into the hospital for aggressive chemotherapy treatment and then discharged on Christmas Eve 2004. Luckily enough, I was in remission. I relapsed in 2006 and had another six-week stay in York Hospital for yet more aggressive chemo, and went into remission again.

At that point, I was offered a mini bone marrow transplant at St James’ Hospital in Leeds but, as I have no siblings, I didn’t have a direct family match, so a donor was sourced from the Anthony Nolan list. The match wasn’t 100%, so I decided not to go ahead with the transplant. Luckily, that was the right decision for me, and I am still here to tell the tale!

My husband and I have been shielding throughout the COVID-19 lockdown, but I have had to attend the GP surgery several times for blood tests. My husband has also attended a hospital appointment since the start of the COVID pandemic.

Carol Miller, founder of York Haematology Support group and Acute Myeloid Leukaemia survivor smiling and holding an award from the Lymphoma Association.

Carol after receiving the Beacon of Hope Award from the Lymphoma Association.

At the beginning of lockdown, I went into my surgery for the blood test. I was asked to park my car and remain in the vehicle; a nurse would come out to the car to take my bloods. The procedure was quick and I felt very safe attending my appointment as the nurse was wearing full PPE.

Later on, during lockdown, I had to attend a Haematology Clinic for blood tests regarding my leukaemia. As I entered the hospital, my temperature was taken and I was asked to use the hand sanitiser provided. I was also given a mask to wear whilst at the hospital. I was seen very quickly and my bloods were taken as usual. A week after my appointment, I had a follow-up telephone call with the consultant, who informed me all was well. We also scheduled in a further appointment for four months time. Once again, I felt very safe and well looked after.

For my husband’s appointment at York Hospital, I was not allowed to go into the hospital with him. That being said, he was seen very quickly and had no problems at all. The hospital was managing appointments very well, and my husband didn’t come across another patient while he was there and managed to maintain social distancing.

Throughout both the treatments, the staff wore full PPE and I had my temperature taken both times, too.

I would advise other patients to never delay contacting their GP. You will be greeted in a very professional manager, and your appointment will be very efficient and safe. Any symptoms you are experiencing are at least worth a phone call. Your GP is not too busy and would always rather you express your concerns; they are there for you. It’s always better to be safe than sorry.

Both my husband and I have felt very safe whilst attending our GP surgery and the hospital and we would never risk leaving things. Speaking to your GP could save your life.

My support group

Both times I was admitted for treatment, I joined clinical trials. The drugs I trialled are now being used

A photo of York Haematology Support Group, taken at one of their meetings. There are around 25 attendees and Carol Miller, founder, sits at the centre of the group, at the back.

Taken at one of York Haematology Support Group’s meetings

to help patients with their treatment, which inspired me to try to set up a support group in York. This was initially for Leukaemia patients, but it quickly grew to cover all blood cancer patients. The clinical team during my treatment were very good at dealing with my illness, but they had not been through it themselves. With the York Haematology Support Group, I’ve found a way to use my cancer experience in a way that can positively help others. Experience is a wonderful thing.

We have now been running for nine years and the group has been very successful. We have approximately 25 – 35 members attending our monthly sessions (occurring the first Thursday of the month) and have been lucky to host a variety of very interesting speakers. We are supported by the Yorkshire and Humberside Haematology Network from the University of York, who have been fantastic.

If you’d like to know more about how support groups may be able to help you or someone you know, click here to go to the Humber, Coast and Vale Cancer Alliance’s support group directory.

An image of a computer screen displaying an open web browser on a page about shielding. The title of the page says ' Guidance on shielding and protecting people who are clinically extremely vulnerable from COVID-19'.

New shielding guidance for the extremely vulnerable group

By | Living with and Beyond Cancer | No Comments

From 6 July, new shielding guidance from the government will come into effect. This guidance applies to the clinically extremely vulnerable who are shielding in England during the COVID-19 pandemic.

The updated advice

You can meet in a group of up to 6 people outdoors, including people from different households, while maintaining strict social distancing.

You no longer need to observe social distancing with other members of your household.

In line with the wider guidance for single adult households (either an adult living alone or with dependent children under 18), you may also form a ‘support bubble’ with one other household. All those in a support bubble will be able to spend time together inside each other’s homes, including overnight, without needing to socially distance. This is a small advisory change that brings those affected a step nearer others in their communities. However, all the other current shielding advice will remain unchanged at this time.

From 1 August

From 1 August, the shielding advice will relax further, allowing those shielding to participate in activities such as visit shops and places of worship, provided they take particular care to maintain social distancing and minimise contact with others outside their household.

You should remain cautious as you are still at risk of severe illness if you catch coronavirus, so the advice is to stay at home where possible and, if you do go out, follow strict social distancing

Who this guidance is for

People who are clinically extremely vulnerable are at high risk of serious illness from coronavirus (COVID-19) infection. They should have received a letter advising them to shield or have been told by their GP or hospital clinician.

This includes:

  • those with cancer who are undergoing active chemotherapy
  • those with lung cancer who are undergoing radical radiotherapy
  • anyone with cancers of the blood or bone marrow such as leukaemia, lymphoma or myeloma who are at any stage of treatment
  • those receiving immunotherapy or other continuing antibody treatments for cancer
  • those receiving other targeted cancer treatments which can affect the immune system, such as protein kinase inhibitors or PARP inhibitors
  • anyone who has had bone marrow or stem cell transplants in the last 6 months, or who are still taking immunosuppression drugs

For more shielding information and guidance, visit www.gov.uk.

If you’re currently shielding and are looking for support, click here for details on how local groups have adapted to be able to continue supporting cancer patients and their families.

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