Remember that lovely advert for Ready Brek that shows people with a warm fuzzy line drawn around them as they venture out into the cold after eating their porridge?
Breast cancer patient Sara Williamson seems to have just that sort of warm fuzzy line around her. She radiates positivity and a sense of well-being.
Yet life hasn’t treated Sara kindly at all, but sitting at her Horbury home she says:
“I am so lucky. There have been several occasions where I could have died. If I can beat cancer, I can beat anything”
Sara worked in financial planning and was devoted to her job, working ‘silly’ hours.
She was recovering from a long-standing health complaint and stomach surgery, so the last thing she expected was to discover a small lump in her breast while taking a shower.
Within a week she was at Pinderfields breast clinic and told there was no doubt it was cancer. It seemed likely judging from the size of the lump, she would be offered a lumpectomy and radiotherapy.
A week later (1st December 2015), when she revisited the consultant, she told him that already she had noticed a change in her breast.
She was reexamined and the prognosis was serious. There were 3 tumours, advanced and aggressive.
Sara was sent home to enjoy a festive break with the news she would have a mastectomy in the New Year, followed by chemotherapy, radiotherapy and a year of Herceptin infusions.
Following surgery, Sara lost a lot of movement in her left arm, and repeated infections meant she was hospitalised.
Chemo was delayed until she was sufficiently well enough. She had three sessions of chemo and appeared to be coping. However, after a fourth session, her temperature soared and she spent 10 days in hospital recuperating from another infection.
There followed further surgery and daily trips to the hospital for seaweed dressings. Sara said the breast care team were awesome in helping her complete the six cycles of chemotherapy.
When she had recuperated sufficiently, she was scheduled for 15 cycles of radiotherapy at St James’ Hospital, Leeds. She was also prescribed Herceptin infusions for one year. As it happened, she had to stop and start the treatment as infusions were judged to be too damaging for her heart to take.
Throughout this cancer journey, Sara was aware of amazing people often working in difficult circumstances. She said the NHS hasn’t sufficient money, and the situation will only get worse. Corners are being cut. But charities and the voluntary sector can fill in the gaps.
She wanted to give back and as she put it: “Turn a bad situation into something good”.
Visiting Breast Cancer Haven in Leeds, was a turning point. I walked through their doors two days after having a mastectomy. The charity has a team of experienced healthcare professionals, counsellors and therapists to support breast cancer patients. No referrals are needed, and patients can visit at any point in their cancer journey. It speaks volumes when you see your consultant or nurse and they recommend Breast Cancer Haven. She has enjoyed acupuncture for pain management, hypnotherapy, Nordic Walking, Thai Che to name a few. She describes it as “One of those best-kept secrets, where you have a break from medical settings and can just be yourself”.
Sara felt that meeting people in the same boat offered her a tower of strength. No one else, no matter how well meaning, could really understand what you are going through.
She began to build a new network which offered a new chance for socializing, instead of feeling excluded. It can be difficult when people expect you to flick a switch and be the person you once were. A lot has changed, though it is not all bad. She has more meaningful friendships, celebrates each day and likes to make a difference.
Breast Cancer Haven offers ten free sessions to each person affected, alongside two hours with a clinical specialist. A full programme of support costs around £1,500 per visitor to deliver. The Yorkshire Breast Cancer Haven does not receive government funding. Sara decided to become an Ambassador for the charity and helps with awareness raising and fundraising.
She joined her local WI and they support her efforts with fundraising currently at £5300.00. This autumn she is planning sky dives, a flower demonstration by Jonathan Moseley and has many surprises and festive events planned for the Yorkshire Breast Cancer Haven.
Following radiotherapy, Sara joined The Bridge Clinic’s course which advocated healthy eating/diet, exercise, dealing with emotions and looking at the future. She felt it had such a lot to offer, she now volunteers in the radiotherapy suite, helping patients with practical issues such as transport and accommodation, and assists staff with understanding her cancer journey, whilst promoting the Bridge Clinic. She was recently filmed at St James’s to highlight improvements in joined up services for the Yorkshire and Harrogate Cancer Alliance.
Sara is now regularly invited to address healthcare professionals to talk about her experience of cancer treatments. She tells them that survival rates are getting better, and people are living longer. You can live a good life with a cancer diagnosis.
She has now been invited to speak at the Yorkshire Cancer Research event Life with Cancer 2017.
She is a patient representative on Mid Yorkshire Trust’s Patient Participation Group and she is a member of Pontefract & District breast cancer support group. She participated in the Leeds Rhino’s CanRehab pilot for women with cancer.
Sara likes to make every minute count, whilst still in recovery, and awaiting more surgery. I do have to listen to my body and rest a lot too.
She adds: “I run at tangents to get things done because I don’t want to run out of time. We all only have one life”.
Rita who is one of our newest Forum members has been running the Leeds Myeloma Support Group since November 2003.
She says she was someone who was always fit and well. When she first became ill, it took quite a while for her to be diagnosed.
Her son was only 12 years old when she was diagnosed with Multiple Myeloma and given the devastating news she had incurable cancer.
She said she had to have complete faith in her medical team and their treatment. There was little information available.
There was also little support – no specialist cancer nurses – and no support groups.
“I felt very alone and isolated. I wanted to be with others who like me had this terrible illness.”
She discovered her nearest group was in Lancashire, but joked that she wasn’t prepared to go over the border. She approached Myeloma UK to give her some tips about setting up her own group.
She felt that if she could help just one person who came through the door, then it would be worthwhile.
The illness is incurable but people can be successfully treated to allow them to live longer and with a better quality of life.
The group attracts patients, carers and family members from a wide area and meets the last Monday in the month at 1.15 pm at the Sir Robert Ogden Centre, St James’ Hospital, Leeds, close to the Thackray Medical Museum. The group have regular guest speakers but also time to share their own experiences.
Anyone interested in going along will be made very welcome.
For further information contact Rita on 07948 089917 or email firstname.lastname@example.org
Life before cancer
In March 2016, Julie Saritag’s life changed completely. She had a busy and challenging job
working for the Department of Work & Pensions. She was fit and healthy and although she had diabetes, she was managing it well. In the shower, she thought she felt a small lump at the top of her left breast. She mentioned it at her routine diabetes check that week. Within two weeks she was attending Pinderfields breast clinic for an examination, mammogram, scan and biopsy. She’d had a mammogram in July 2015, when she was given the all clear.
Julie knew at once that the consultant and breast care nurse was worried she had cancer, even before any results had come back. She consoled herself with the knowledge that the lump was tiny – 17mm – and that it had been caught early. The plan seemed to be for her to have surgery on the lump, and then radiotherapy. Julie confidently told her work that she would soon be back. The consultant sent a sample of tissue off to America, where their research is more advanced.
However, the news from the team in America wasn’t good. It seemed that the cancer was much more aggressive than had been first thought. Now Julie was scheduled to have chemotherapy following a lumpectomy. Reflecting on the treatment offered, Julie wishes she had been able to consider a mastectomy or lumpectomy. From the moment the diagnosis was confirmed everything seemed to move so fast there was little opportunity to reflect on what options were available.
“That really flawed me. I felt cheated as I knew we had caught it early. I would have liked to have been offered an informed choice and understood the side effects of chemo. Everything seemed to move at lightening speed and although I knew chemotherapy wasn’t pleasant I had no idea it had some serious long term side effects.”
Going through chemo
Julie was offered chemo at Pontefract Hospital, which was local to her home, and convenient for her family and friends taking turns to transport her to appointments.
She tried the cold cap, designed to help patients retain their hair during chemo, but found the ice-burn type pain overwhelming. In the end, she started to lose her hair and asked her sister-in-law to shave her head. It had been traumatic to find clumps of hair on her pillow, and actively choosing to shave her head felt much better.“It felt like a weight had been lifted, it had happened, it was done and it was just a case of waiting for it to grow back. There is no shame in having no hair and surprisingly I felt quite liberated by it”
Support from fellow breast cancer patients
After her first chemo treatment, Julie said she felt very alone. Her family and friends were supportive, but they worked during the day. She felt lonely and also that she needed to talk to someone who had gone through the same experience. She had been given a pile of leaflets at her first appointment at the breast clinic.
She found a leaflet for Pontefract & District breast cancer support group and called the founder member, Rachel Brown. Rachel said she would call around for her, and take her to the group which was meeting the next day. Julie went along with Rachel, and has attended every meeting since, taking an active part, recording brief notes to send out to all their members, particularly those who can’t attend, because they have returned to work.
Although Julie was scheduled to have six rounds of chemo, in the end she only managed four sessions before her consultant advised against more treatment. She suffered from endless infections, eventually being hospitalised twice with different infections.
Discovering Breast Cancer Haven
Following recuperation, she was offered 15 sessions of radiotherapy at St James’ Hospital, Leeds. She found the experience completely draining, although she felt lucky that because of the angle of her tumour, she was able to be treated without danger to her heart. She visited Breast Cancer Haven at Leeds, a national charity that provides free support to anyone affected by breast cancer from its centres across the country. Breast Cancer Haven offers alternative therapies, counselling and support. Julie used her time to access their library and read about reiki and hypnotherapy.
Julie’s sister had recently tried hypnotherapy for a long-standing issue, and she urged Julie to consider training as a hypnotherapist. She felt that Julie, who had always managed and cared about her staff team and various family members had the ideal skills for an hypnotherapist.
Julie makes an important decision
Julie had been feeling guilty about work. She felt guilty about not being there for her staff team. She was someone who never took time off, and she had anticipated being back at work much quicker. But she knew, that the challenging role she had carried out before, would no longer be possible. “I could never go back to the life I had before I felt mentally exhausted and now I knew life was precious and I had to do something to protect my health.”
So although she had just completed radiotherapy and she was still feeling tired, she thought it through and felt she couldn’t turn down this opportunity to embark on training with the Yorkshire Hypnotherapy Training school. A course was starting immediately, based in York. There would be classroom sessions, some weekend studies, reading, practice hours and assessments spread over the next 10 months. This could have been a stressful time, but Julie said she found the course calming and it helped her to deal with the ongoing abscesses following radiotherapy and her struggle to control her blood sugars following steroids. It also helped Julie with her mental battle against lingering side effects of treatment.
A new start
Now Julie is a fully qualified Hypnotherapist and cognitive behavioural therapist. She returned to the DWP to a new role, working fewer hours. Her long-term goal is to build up her hypnotherapy practice Serenosis Hypnotherapy and Mindful Relaxation, but at the moment is setting up in a small way. She wants to specialize in stress, anxiety, menopausal issues (which can be triggered by chemotherapy) and work-related stress. Her friends at Pontefract breast cancer support group have already been able to benefit from her new skills, which she has offered free of charge.
Julie can be contacted on:
Serenosis@hotmail.com and Tel 07715 494826. She is happy to talk to anyone on the merits of hypnotherapy for assistance going through treatment or for families and carers.
Julie’s story helps to remind us about the importance of checking our breasts on a monthly basis. Julie had a mammogram in July 2015 when she was given the all clear. However, that is just a snapshot of that moment in time. By March 2016, Julie had developed a cancerous tumour.
Cancer can develop quickly.
Coppafeel is a charity aimed at educating young men and women to check their boobs throughout their life. They have clear guidance on their website: https://coppafeel.org/boob-check/
I Hope I Miss the Bus – or That the Bus Misses Me!
It’s 4.30 in the afternoon, 5 November 2010. The telephone rings. It’s my sister, Janet. I’m expecting her call as she had a hospital appointment earlier in the day. I’m concerned for her. For some time now she’s been complaining of feeling bloated and fat, and no matter how much she walks and how much she watches her diet, she still can’t seem to get rid of the extra inches around her waist that make her feel uncomfortable. My sister is not fat; I’m sure there must be something more to this.
‘So, how did you get on?’ I say. There’s a long pause.
‘Bill,’ she’s called me Bill for as long as I can remember. ‘It’s not good I’m afraid.’ Her voice breaks very slightly. ‘I’ve got cancer . . . ovarian cancer . . . stage 3.’
It was with my sister’s diagnosis that my cancer journey started, not only watching the progress of her disease, but also facing up to my own cancer diagnosis in the March of the following year.
As a family we did not really experience health issues. My father had died in 2007 from Parkinson’s disease, but he was 90 and had kept going pretty well until the last couple of months of his life. My mother, who in 2010, was 89, was very healthy, on no medication of any sort, and living on her own in her own house with no help other than the regular visits from my sister, who lived only forty-five minutes away, and rather less frequently from me, as I lived a three hours’ drive away. The only drawback for my mother was that she had developed macular degeneration when she was in her early seventies, as did her father before her, which for someone who always enjoyed reading and research, was pretty wretched. However, she soldiered on and never complained. So, ill health was not something we expected in our family. I’d had a bit of a do in 2002, (a diagnosis of follicular lymphoma, but which was disputed by some of the medical teams involved at the time, followed by chest pains after running a 100m sprint. I had just had a bone marrow aspiration two days before the run as part of the lymphoma diagnosis, so perhaps I wasn’t giving my body much of a chance!). Anyway, I was over all that, and my sister had been totally fit and well throughout her life. Like me, she could count the number of days off work she’d had on one hand – literally! She had retired on 30 September 2009, the day after her sixty-first birthday.
For about a year before Jan’s diagnosis, I had been experiencing general urinary discomfort: needing to get up at night (I’d always been used to sleeping like a log), difficulty starting to urinate, taking a long time to finish, a weak flow – all sorts of little signs that to be honest, I put down to the natural aging process, although I was still in my fifties. I didn’t have any pain or discomfort other than the symptoms I’ve described. However, Jan’s diagnosis had got me thinking; just because we had always been so healthy didn’t mean that we were immune to the normal risks. I made an appointment with my GP, who is also a friend.
My wife and I live in a village in North Yorkshire with a population of about 320, and in 2011, there were about ten or so practising or retired doctors and surgeons, not to mention their wives, many of whom were nurses. Collapse in our village and you’d be killed in the rush of medics trying to save you!
When I saw my doctor, I was really just looking for reassurance. I didn’t imagine for one moment that there’d be a serious problem. She chatted a bit and asked about my symptoms, then did her worst: a (DRE) digital rectal examination, which, for those who don’t know what it is or don’t have much of an imagination – or for that matter, a sense of humour – a DRE requires the doctor to don a pair of surgical gloves, liberally coat a finger with lubricating jelly and insert the said digit into one’s rectum. Not the lasting image I especially wanted my doctor to recall as we chat over a delicious glass of Château du Courlat at the next meeting of the village Wine Circle! However, as professional as ever, she did what had to be done.
‘Your prostate feels OK, but we’ll do a blood test, just to make sure.’
The following day when I returned home from work, my wife told me that the surgery had telephoned and wanted me to ring as soon as possible. I must admit, it was at that point that I started to feel a little anxious, not so much for myself, but for my poor mother. To have one of your children diagnosed out of the blue with a life-threatening disease was bad enough, but for both to be afflicted at the same time was pretty grim, even if we were mature adults!
The receptionist told me that my doctor would fit me in around any other appointments she had. Help! I thought. This must be serious.
‘Your PSA’s raised,’ she said. ‘In fact, it’s pretty high.’
‘What does that mean exactly?’ I asked, although I knew enough to know that it wasn’t something one wanted to hear.
‘Well, it can mean a few things – prostatitis, benign prostatic hyperplasia, a fluke in the blood test or cancer.’
‘So how high was my PSA?’ I asked rather feebly.
‘It was 26. We get a little worried if it goes over 4. So I definitely think you need to be referred.’
PSA stands for prostate specific antigen, a protein produced by both normal and cancerous prostate cells.
I was duly referred to a urologist at my local hospital, who couldn’t have been kinder, more practical, more thoughtful or more uplifting. He was super. Lots of fun. Really took the inevitable fear out of the situation. He carried out a TRUS – transrectal ultrasound guided biopsy (yes, the old rectum gets it again!), a procedure that is certainly not pleasant but in my experience, shouldn’t be feared. It’s more uncomfortable than painful and of course, because of the nature of the procedure, one feels a little self-conscious and somewhat vulnerable. However, each time I’ve had one, (I think I’ve had three in total), the urologist and the nurse who attended were delightful, fully aware of my feelings and doing everything they could to put me at ease. I guess that if one’s into black humour, there are definitely some comedy moments. It certainly broke the ice when I suggested that this might be a good start for the annual urologists’ Easter egg hunt!
Some doctors are reluctant to subject patients to PSA tests because of the unreliability of the test. Indeed, they can produce false positives and false negatives. A high PSA doesn’t necessarily mean cancer, but equally, a low PSA can suggest no problem at all when there really is a serious problem. Added to that, the normal procedure after a raised PSA is to conduct a biopsy. Generally, this is perfectly safe and one is give high doses of antibiotics before and after. However, the sterile interior is breeched when the small, hollow needle on the end of the probe goes through the wall of the rectum into the prostate. For some, infection can occur. I hasten to add, although not performed under general anaesthetic, local anaesthetic is administered before the biopsy needle is inserted; all one feels is slight pressure and then a feeling as if you’ve been flicked firmly, somewhere deep in the nether regions. After the ten or so samples have been taken, it’s quite a relief that it’s over. Anyway, this is why some doctors are reluctant to subject their patients to PSA testing, unless they really feel it’s necessary.
During the week after the biopsy, I had an MRI scan and a bone scan, the latter carried out by the injection of a tiny amount of radioactive substance, called a tracer, a couple of hours before having the actual scan. The tracer shows up possible bone metastasis. It’s all totally painless, and the tracer just passes through the body and out in the urine.
Soon after that I returned for a consultation with my urologist: 1st March 2011.
‘Well, you have got a dodgy prostate, Neil.’
‘You mean I’ve got cancer?’ I replied.
‘Yes. But it’s very localised. It’s just started to move into the seminal vesicles, but there’s no sign of it in any of the tissue around the prostate, nor in the bones or the lymph nodes. We’ll get on with the treatment right away. I want you to start these today, as your PSA has gone up to 34.6.’ He handed me a prescription for Bicalutamide, a hormone treatment in the form of a single tablet each day, which suppresses the testosterone in one’s body. Prostate cancer cells need testosterone to multiply.
‘I want to see you again in a few weeks, by which time, the PSA level should have started to reduce. In the meantime, I’ll arrange for you to be seen by an oncologist so that your treatment plan can be put together.’
And so my journey began.
In the July of 2011 I was admitted to St James’ University Hospital in Leeds to undergo High Dose Brachytherapy. This is a long procedure carried out under general anaesthetic where several needles (in my case, 13) are inserted into the prostate through the perineum. It’s a lengthy operation largely because an incredible amount of time is spent lining up the needles in exactly the right places to zap the cancer cells, and calculating the radiation doses for each. I understand that I was in theatre for about four hours; the actual radiation part takes only about twenty minutes.
When I first went into theatre, I was still conscious, and the consultant carrying out the procedure was keen to show me what was going to happen. I guess he’d sussed me out beforehand as someone who was quite interested and wasn’t going to flake out at the sight of all the instruments and machines. The theatre was like Mission Control. There were flickering monitors everywhere and high tech instruments with operators working from one to the other.
I was duly anaesthetised and the procedure was carried out. When I came round I was immediately alert (I seem to respond well to general anaesthetics) and looking forward to something to eat and drink. I stayed in hospital for another night and then went home the next day. I had localised bruising – in fact, it looked as though I’d been kicked in the groin by an enraged horse! – and blood in my urine for some days. But I was fine and able to carry on with life as normal.
In the September of that year, I started my external beam radiotherapy – twenty-three sessions over a period of four weeks. Great, weekends off! I should add, I was still working at this time, and because I managed to arrange my short stay in hospital during some holiday, I didn’t need to take any time off work throughout my whole treatment programme. It was an hour’s drive from my home to Castle Hill Hospital near Hull, where I had my radiotherapy, and I was able to gear my time so that I could leave mid-morning to arrive just in time for my 11 o’clock time slot to be zapped, and get back again just after lunch.
Radiotherapy, for me, was really very straightforward. And the bonus is, one gets a free tattoo! Don’t get too excited those of you who are into body art; it’s not interweaving snakes in green and blue ink, disappearing into places where the sun doesn’t shine. No, just three tiny blue dots so that when one has the actual radiation, the radiologists can line you up very accurately. Each session was over in minutes, and although, for some, it can cause slight burning on the skin, luckily, I didn’t suffer any after effects, probably because I had only twenty-three sessions owing to the fact I’d had the high dose brachytherapy earlier. I believe that some men, who have thirty-five sessions, do often have a little burning, but they give lots of advice and creams, if you need it, and look after you very well indeed.
Once the radiotherapy was completed, then it was just a question of taking the Bicalutamide on a daily basis, and getting on with life. I had a regular appointment with my oncologist – with blood tests beforehand – just to check PSA levels. These dropped right down to 0.42 by September 2012, and so life was good. When the oncologist handed me back to the urology department, and I was then seen just every six months by the specialist Macmillan Urology Nurses, I really felt that this was all behind me. However, by November 2014, my PSA levels had started to rise again – only very slightly, but they were rising. I continued to see the specialist urology nurse for another year, as although my PSA levels continued to rise, it was very slow. However, by early 2016 it was up to 2.55, and so I was referred back to my oncologist.
He monitored me again for about a year, but then as the PSA level continued to rise, in February 2017, he decided to put me onto a three-monthly hormone injection – Prostap 3 (leuprorelin acetate) – and he also suggested that I went onto the STAMPEDE clinical trial, which was looking at the efficacy of the treatment for prostate cancer patients if they were also taking Metformin, a drug used in the treatment of diabetes. I had to have a chest x-ray and various blood tests, just to make sure that I wasn’t already diabetic. I wasn’t; but as my initial hormone therapy on Bicalutamide had been for three years, this was deemed to be too long and didn’t comply with the STAMPEDE criteria. So I was a STAMPEDE reject! However, I did have another MRI and a bone scan. Two hotspots showed up on my spine. The radiologist couldn’t say for certain that this was metastasis, as the spots were so small. However, it made no difference to the treatment plan, and so I arranged with my GP for the Prostap 3 injections to start. I had no symptoms at all and felt completely fit and well. At this point my PSA was 40.5, the highest it had ever been.
I had my first injection in February 2017. The site of the injection became a little inflamed and hot, and slightly raised, although after a few days, it calmed down and was fine. However, with each injection, the reaction was a little worse. What’s more, although my PSA had dropped dramatically from 40.5 to 5.65, thereafter, it did not go down as quickly as might have been expected. In August of 2017, my PSA was 4.63. At this point I did some research myself, which indicated that in the event of a sterile abscess or allergic reaction at the injection site, there could be reduced absorption of leuprorelin. I revisited my GP and he decided to refer me back to the oncologist, who agreed that I should come off Prostap and start on Zoladex, a pellet implant rather than a suspension.
I had my first Zoladex implant in September 2017. By November of that year my PSA had dropped to 1.41. It continued at this level at my next blood test in March 2018. However, in May 2018, there was another slight rise, and another in August. I had a repeat bone scan, MRI and this time, a CT scan.
The bone scan indicated that although one of the earlier hotspots, which had showed up in February 2017, had disappeared, the other was slightly larger. There was no evidence of any bone metastasis anywhere else. The MRI showed no change, although the CT scan showed some lymphadenopathy around the cava. Thankfully, I was able to arrange for my records held at Aberdeen Royal Infirmary, the ones relating to the possible diagnosis of non- Hodgkin lymphoma, to be made available, and my GP had them transferred onto my current file. Because of that, my oncologist was able to see that the lymphadenopathy that showed up in my recent CT scan was probably a hangover from whatever it was that suggested non-Hodgkin back in 2002. Anyway, he decided it was insignificant. Had I not been able to rustle up these old records, I suspect that the current lymphadenopathy might have been attributed to prostate cancer.
So, here I am in 2019, and still going strong! I’m not free of cancer, and probably never will be. But I live a very active life. I have no symptoms. I am able to spend a lot of time gardening – I also have an allotment, I walk about four miles at least three times a week, I go to the gym, I go salmon fishing in Scotland twice a year, I am a governor of a school, and my wife and I enjoy to go away on holiday when we can, as well as visiting our two children and our grandchildren.
I’m lucky, I admit. Prostate cancer has inevitably ‘damaged’ me physically to some extent – hot flushes from hormone therapy, which are very uncomfortable (I’m now in total sympathy with ladies of a certain age!), some gynaecomastia, a significant reduction in libido . . . err . . . total reduction in libido – but I’m fit and well generally, and I could be suffering from something so much more devastating, as many people are.
I have a very philosophical view. Life is terminal. Nothing is more certain than that we are all going to drop off this mortal coil at some point. If it’s prostate cancer that causes my demise ultimately, so be it. It could just as easily be the number 28 bus as cross a busy road without thinking! If and when my disease progresses, I know that the progression will be monitored and I’ll be well looked after.
As I said earlier, my cancer journey started with my elder sister’s diagnosis of ovarian cancer. She did terribly well, having two lots of chemotherapy, both of which she seemed to sail through without too many side effects. She lost her hair and felt a little tired during treatment, but like me, she was very positive and optimistic. In April 2013, my son got married, and Jan came to the wedding looking great. However, the following month she was facing yet another session of chemotherapy and was still suffering from ascites. In August of that year, my wife and I were in Scotland, fishing. I knew Jan was not so good, and so I telephoned her each evening. One night half way through our holiday, I was aware that she was far from well.
‘We’re coming back. I’ll be with you tomorrow,’ I said. The interesting thing was that she didn’t argue. The day after the telephone call, my wife and I arrived home after a seven-hour drive. I did a quick turnaround and headed another three hours down the motorway to my sister’s house.
I stayed with her, largely to keep her spirits up. She was not in pain, nor was she terribly afflicted; it was just that she knew her disease was advanced and I guess, she just had a natural fear of what was going to happen. As it was, after a couple of weeks, I got in touch with Macmillan, and a nurse came to visit. A week later, Jan was admitted to Warwick Hospital to have the ascites drained. When she came out after a couple of days, she was very weak, and so I contacted Myton Hospice in Warwick. She was admitted on Friday, 23rd August 2013.
As soon as she was in the hospice I could see a sort of calm come over her. The stress of being ill and having to look after herself – even with my help – had been lifted. During the following days I stayed with her but disappeared from time to time to give her time to rest. She was sleeping a lot by then in the day, although when she couldn’t sleep during night, she would get very upset and depressed.
A week passed. Jan had entered another stage in that she was much calmer. She had been given some medication to help her sleep. She still wasn’t in any pain, and the hospice doctors and nurses were looking after her amazingly. She was comfortable and safe.
On Wednesday, 4th September, I went in to see Jan as usual, arriving at about 10am, just after the doctors’ rounds and all the usual medication had been administered and ablutions carried out. She was deeply asleep and so I sat with her and held her hand. There was a flicker of a smile; a recognition that I was there, but she remained asleep throughout the day, just stirring occasionally to move her arm or a leg. As the sun started to set that evening, I decided that I should go and get something to eat and return early the following morning; I was very tired and emotionally drained.
‘Goodbye, Jan,’ I said as usual, as I walked out of the door closing it very softly behind me. She was deeply asleep.
At 4am the following morning the telephone rang by my bedside. ‘It’s Myton Hospice here. Your sister’s breathing’s changed and we think it would be good if you came in.’
I washed and dressed as quickly as I could and drove to the hospice. It was a beautiful morning and the sun was starting to rise. I went straight to Jan’s room. She was lying on her back – someone had thoughtfully brushed her hair for her – breathing deeply. Her breathing was definitely different – slower with a different pitch. I sat next to her and held her hand. She didn’t stir.
After about an hour, as the sun’s rays shone through the curtains lighting up tiny specks of dust, the slow rhythm of her breathing changed again – halting, more laboured. I looked at her face. She was calm and peaceful. The breaths came further and further apart and then she gave one very long and deep breath.
I waited for the next.
It never came.
My sister died at 5.35am on Thursday, 5th September 2013, three weeks before her 65th birthday. My mother died on 17th September 2014, a week after her 93rd birthday. They were cremated on exactly the same day a year apart, and their ashes were interred together with my father’s ashes.
I had, and still have, a super family, and it’s because of their love, support, pragmatism and optimistic outlook on life that I’ve been able to approach the past eight years so positively. I look forward to the future, whatever it may bring, because by wallowing in despair and self-pity, one loses out on so many good things and so many good times.
Yes, I’m very lucky indeed!
Neil W Gardner
Born in Warwickshire. Trained in law in Birmingham for a few years after leaving school, but then went into teaching. Spent a year working for the Mission to Seamen in Rotterdam. Met my wife, Carol, at Durham University (we were in adjoining colleges). Married in North Yorkshire. We have two adult children and three grandchildren. I have lived and taught in Co. Durham, Norfolk, Banffshire, Worcestershire, Perthshire, Gloucestershire and North Yorkshire. I gained my first headship of a prep school in Worcester in 1990 – three other headships followed, two in Scotland and one in Gloucestershire. Retired from headship in 2006, but started teaching English, speech and drama again in 2007 until December 2013, when I fully retired after the death of my sister.
I dismissed cancer as the menopause but my cat knew better
Like many middle-aged women, Gill Kelly thought the symptoms she was suffering from were the usual, annoying menopausal ones.
Constantly feeling bloated, getting tired easily, the onset of erratic periods and needing to pee all the time.
But in fact her symptoms were almost a classic text book case of those associated with ovarian cancer – a disease which affects more than 7,000 women each year.
Gill, a married mother-of-two grown-up children, admits it never entered her head that it might be ovarian cancer. Although, her late mum, Shirley, who recently died, was diagnosed with ovarian cancer seven years ago, Gill was adopted, so there was no family history
But she mistakenly thought it must be the menopause kicking in and took up swimming to try to lose weight.
Gill who is a member of the West Yorkshire & Harrogate Cancer Alliance Community Panel said: “My symptoms did not subside, and in August 2017 when I was on holiday, I was applying sun-cream to my stomach and could feel a very definite lump.
“But I buried my head in the sand, even then, and put it down to my newly-developed abdominal muscles thanks to all the swimming I had been doing.
“Fortunately, it was my cat, Humbug, who literally saved my life.
“Humbug jumped on my stomach on night when I was laying on the bed.
“I cried out with the pain, prompting my husband, John, who insisted I go to the doctor immediately to get it checked out.
“I was very lucky because it’s not an easy disease to diagnose but my Huddersfield GP quickly realised that it could be ovarian cancer, and I was fast-tracked through the tests and scans.
“Initially, we were elated as my test for ovarian cancer came back as normal and we thought I did not have cancer.”
The couple’s elation was short-lived, however, and after a CT scan showed a 17cm mass, she was admitted to hospital in November for surgery.
The cyst removed from her right ovary at St James’s Hospital, Leeds, weighed an astonishing 2kg.
Coincidentally she was in the same ward, and operated upon by the same surgeon who had looked after her mum.
In December she went for her follow-up appointment, and for the first time she heard that despite her optimism the cyst was in fact cancerous.
She says: “That was when my world stopped.
“Up until that point, I had been optimistic about the whole thing, and even when I was warned that there was a 90% chance that my cyst was cancerous, I was determined that I would be in the 10% that wasn’t.
“We were told that it was ‘stage 1a’, and that I wouldn’t need any further treatment, just three-monthly blood tests and check-ups at the Macmillan Unit at Calderdale Royal Hospital.
Ovarian cancer symptoms
Symptoms can be difficult to spot and can be the same as IBS or PMS
- feeling constantly bloated
- a swollen tummy
- discomfort in your tummy or pelvic area
- feeling full quickly when eating, or loss of appetite
- needing to pee more often or more urgently than normal
See your GP if:
- you’ve been feeling bloated most days for the last 3 weeks
- you have other symptoms of ovarian cancer that won’t go away – especially if you’re over 50 or have a family history of ovarian or breast cancer, as you may be at a higher risk
Information from www.nhs.uk/conditions/ovarian-cancer/symptoms/
“I remember driving home with my husband, John, phoning our family and friends, and hearing every single one of them say what good news it was that it was ‘only’ stage one, and how great that I didn’t need further treatment.
“But my mind had focused on the word ‘cancer’, and for many weeks I couldn’t move past that.”
From being a bubbly, outgoing person she says she felt like a completely different person to the confident, capable and optimistic one she’d been before her diagnosis.
She made the difficult decision to resign from her job as a special needs teaching assistant – a job she loved, because she didn’t think she’d be able to do it properly.
In March 2018 Gill was holding her mum’s hand as she died and needing emotional support contacted Ovacome, a national UK ovarian cancer charity, to find out as much information as she could about her condition.
The online forum was an enormous help because she found that she could ask all the really pertinent questions she needed to and talk about all her worries and fears
As she says: “There were things that I couldn’t say in front of my family because I didn’t want to upset them.
“The greatest turning point for me was attending one of the support days in London.
“It was such an empowering experience to meet so many other women in the same situation as myself and to be able to swap stories and ask questions.
“Sometimes it felt like some of the ladies I was speaking to had read my mind, because what they were saying was exactly what I was thinking.
“We had talks on nutrition, exercise and mindfulness, and it was like a light-bulb going off in my mind because I realised that I could take control of my life again – I could eat healthily and exercise to make sure that if this dreadful disease does come back, I am as fit as possible to combat it.
“The high point was finding out in August last year that I had been selected along with 15 other amazing women to be a Touch of Teal model. Teal is the colour that Ovacome uses for its identity.
“And on Saturday, March 23, we are modelling in a fashion show at the Mayfair Hotel, London, to help raise money for Ovacome and to raise awareness.”
The event will include a champagne afternoon tea, auction, live entertainment, and of course the all-important fashion show. All money raised will go to the Ovacome charity.
Gill added: “It was slightly weird as I’d done modelling from the age of 10-18 but I never expected to return to it in such circumstances!
“I am thrilled and a little bit scared about this, but I am doing it in memory of my lovely mum, who was such a fantastic role model throughout her illness – she was positive and upbeat throughout the whole time.
“And I also feel strongly that more needs to be done to highlight early awareness of symptoms as it can be easily confused with irritable bowel syndrome and other ‘gastro’ problems.
“Ovacome has been a lifeline for me, and I hope that by telling my story, I can help to raise awareness of ovarian cancer, and also of the help and support that is available after diagnosis. I hope my lovely mum would be proud of me.”
Go to Gill’s fundraising page:https://ovacome.rit.org.uk/fundraisers/help-gill-kelly-to-make-a-real-difference