treatment – June's Jottings

It’s a big day for me today.

It’s six weeks to the day since I had my double mastectomy and reconstructive surgery for breast cancer. It’s a day I have been looking forward to for months. The day when I can ditch the velcro band that I have had to wear 24/7 since the minute I came out of theatre (except obviously in the shower!). The day when I am allowed to drive again and get a bit of independence back. The day when I need not go to bed at night to try and get to sleep sitting up. So, yeah, it’s a big day!

If you haven’t been following my story so far, then a short re-cap. I was diagnosed with early stage breast cancer in December, brought about because of high dose radiotherapy I had in the sternal area for Hodgkin’s Lymphoma 19 years previously. Although it had always been a threat, it still came as a bit of a shock when I was diagnosed, as I thought that maybe being so long after the radiotherapy, I was going to be ok. Then it was the decision what surgery to have. The hospital were advising me to go for the mastectomy option, whereas I felt I wasn’t ready for it, and was pushing for the partial mastectomy option with chemo follow-up. My surgeon was very sympathetic and didn’t want to push me towards something I wasn’t emotionally happy with so two days after Christmas 2011 I went in to hospital as a day case for a wide local excision and sentinel node biopsy. Normally, after such an op, most women (and some men – yes men get breast cancer too!) then go on to have low-dose radiotherapy to the area, but because I had been zapped before, this option was not open to me, and I was started on a course of tamoxifen 20mg to be taken for the next five years. Yep, it’s a long course! However, on receipt of the pathology results, my surgeon informed me that whereas during my WLE op they had managed to get the 11mm tumour out, there was still some DCIS (ductal carcinoma in situ – basically cancerous cells that have not yet spread) remaining, and that a second operation was required to remove them. So in February, I went in for the exact same procedure – and this time it was successful.

On my follow-up after the second procedure, my oncology surgeon provided me with some rather scary facts – basically the likelihood of a more aggressive cancer returning within the next 12 – 24 months in one or both sides was extremely high, and I should still consider having a mastectomy – either one sided and the other done six months later, or both at the same time. Either that or I could continue with the tamoxifen treatment and just live “on a wing and a prayer” that the cancer wouldn’t return. Basically, the options were lose my boobs and live a happy and long life with no threat of breast cancer returning, or staying as I was and in doing so, cutting my lifespan short drastically. I wanted to see my kids grow up and get married, I wanted to do so much more with life that I decided the double mastectomy was the sensible option – get it over and done with – and booked myself in for the surgery at the beginning of June.

My hospital room

Although initially I hadn’t wanted implant reconstruction, the medics advised me strongly to get them – mainly because of my age (they recommend young patients to get them as the emotional impact on life thereafter is more positive), and all the information was given to me well in advance of The Big Day, including the necessity to wear a velcro band across my chest 24/7 for six weeks (to keep implants in place), do no housework for the first six weeks post-op, no stretching, no strenous exercise, no driving and no sleeping flat in bed. The next thing I knew, the op was over and I was the owner of a new set of smaller boobs and the victor of another battle against cancer. The surgery took a few hours (I believe) but within a couple of hours of getting back to my “suite” (my name for my personal hospital room) I was having the obligatory tea and toast; and the very next morning I was up and about, dragging two surgical drains in my wake. Recovery was uneventful – the painkillers were great as they were not only effective on making the whole post-op thing pain-free, but they turned me into a space cadet, so visitors were often subjected to me rambling on about nothing in particular usually about nonsense! Having had my surgery on the Tuesday, I was scheduled to go home on the Friday, but my drains were still filling up too quickly, so my stay was prolonged by an extra couple of days – very frustrating, but necessary – and then I was home!

Went back for my review appointment a couple of weeks later – the surgeon had in his hand the pathology results from the operation. He told me that in choosing to have the double mastectomy when I did was exactly the right decision, as they found that in the opposite side from where my tumour had been, there were numerous atypical cells and a 4mm section of DCIS – in plain English, if I had just stayed on tamoxifen treatment without having had this operation, I would have been in a worse position come this Christmas than I was last year as the cancer would have returned (a different and more aggressive type of breast cancer that is not affected by tamoxifen). So there you go folks! It seemed a bit of a drastic option to take, but it has literally saved my life.

Six weeks on and I have enjoyed bedrest whilst watching Wimbledon tennis on the TV, people running hand and foot after me, my Mum’s baking arriving by the tin-ful, flowers and cards from friends, and a few visitors. The reconstructive surgery is so good that many people haven’t realised I have already had the operation! My cancer nurse has warned me that I will shrink some more, and that by Christmas time (another five months away) my body will have taken on its new look. So I guess I am still metamorphosising as I type up this blog. I am back on tamoxifen (to purge any rogue cells that may have got into my system from the surgery) and that makes me feel nauseous most of the time, but I see that as a small price to pay for beating cancer yet again. I have the odd “wobbly” day when I have a self-image crisis, but that is because my chest still feels tight and like I have internal sunburn; and also because I’m still quite swollen, I think that everyone is looking at me thinking I look like Dolly Parton! But things are on the up, and having reached this milestone it’s the start of a whole new life chapter.

Cancer isn’t necessarily a death sentence folks – take it from a Pro cancer fighter like me. Stay positive – getting stressed or wallowing in self pity won’t make it go away. At times it is tough going, but persevere. Having a fantastic family, fabulous local friends, and an amazing array of supportive gems through Facebook and Twitter (most of whom I have never met!) has helped enormously, especially with the emotional side of things. Advice and humorous stories from one lady on Twitter who went through similar surgery to me a few years ago was appreciated most of all – thank you Sandy. Since then I have been able to help a couple of people online who are facing similar surgery to that which I have gone through. Cancer is scary, cancer is frightening, but when you beat it to a pulp, there is not a feeling like it in the world. There’s a great life out there for living.When I was in hospital, I often took a little stroll along to the adjacent General Oncology ward to chat to some patients who hadn’t got visitors, and compare surgical drain bags (yes the fun we stooped to in hospital!). In that ward I met some real superheroes, all fighting their own personal battles against the big C – some were winning, some were trying their best to win, but things were tough. It was a very emotional experience. I went back to my ward knowing I was one of the lucky ones who would be walking out of that hospital when my discharge day came. I still think of those brave souls today and wonder how they are getting on.

Scores on the doors: June 3, Cancer 0. Let’s hope this time it got the hint and never comes back

!P.S. An update to my last blog…..I completed my Race For Life in May and raised £1,057 in the process. Thank you to all who sponsored me.

Alternative About Me

Five Weeks To Go (originally published April 2012)

July 31, 2012January 20, 2023 June L

It’s been way too long since I wrote my last blog, so it’s time for a quick update on my life, the universe and everything. It’s been a pretty hectic and “full-on” few months!

At the time of my last blog I was awaiting my second operation to remove the DCIS cells that the surgeon hadn’t been able to get out initially – it’s pretty common for this to happen, so I wasn’t as worried this time around. In fact, the nurses had to tuck me into the bed with a “Bear Hugger” to stop me from getting up and “getting in their way” – they were busy and I felt at a loose end! Well, they do say nurses make terrible patients! Fortunately, following this second op, the surgeon was able to tell me that they had removed all the cancerous cells that were there at the time, and put me on a course of tablets (tamoxifen) for two months, stopping for a month before surgery. These were ok actually, I had expected tons of side-effects, but actually instead of gaining weight, I lost heaps mainly due to the fact that it made my food taste metallic and therefore made me feel nauseous. The only meal I could really enjoy was dinner when I totally “pigged out”. So currently I am a size 6, which I can’t complain about I suppose! I also felt absolutely shattered a lot of the time. Unfortunately for me, following my op I have to go back on these darn pills for five years – the reason being that if any rogue cancer cells get into my blood stream during surgery, the tamoxifen will kill them off. So at this current moment in time, I am on my drug break, and have five weeks to go until surgery (the date for this being Tuesday 5^th June – just after the Jubilee!). If I’m being honest, I do have my “wobbly” moments, but in another way, I’m looking forward to living without the threat of imminent cancer for the first time in half my life! And a new bod for summer as well, even though for a good proportion of the season I will be under bandages! During the wobbly moments I keep telling myself that of the two evils left to me – a lifespan of 5 years or this operation, the latter is the one I would have one hundred times over as long as it meant I could see my kids grow up etc. Heck, there’s a lot of living left in me to do yet! Cancer is NOT going to beat me this time. No way Jose!

Next Sunday (6^th May) I am running Cancer Research’s Race For Life with two of my lovely friends. It’s only a 5k one (the 10k happens just after my surgery, so there is no WAY I could do that, unless someone pushed me in a wheelchair!), but for me – who is a total non-runner, (I have the worst knees out that dislocate easily – so this will be fun!), it is a marathon. I wanted to do it as an almost three-times survivor with a positive message, that cancer doesn’t kill everyone, and the sign I am planning on wearing on my back will say something to that effect. I have benefited from new advances in cancer treatments and cures – and seeing that twice as many patients are cured from cancer than they were 40 years ago (Cancer Research statistic) – surviving this dreadful disease is becoming more commonplace. I’m also running it for

family members and friends who have/have had cancer, and also those people who I do not know who have/have had cancer; as well as those who lost their battles. So that’s a lot of people I am trying to raise money for! To date, I have raised £615 through the generosity of Facebook friends, Twitter followers and personal friends. If you are in the position to sponsor me, please visit www.raceforlifesponsorme.org/june-louiselaurenson or text SJLL71 £donationamount to 70070.

So that’s me. Oh yes, I have also given up my nursing registration – that’s a story for a separate blog – and am looking forward to somehow starting a brand new life chapter and career when things start getting back to normal in August – I’m not sure doing what career-wise yet – but waiting to see what opportunities life throws at me. Life is for living, and that is what I intend to do!

Alternative About Me

Never, never, never give up; my cancer story (orig published in Aug 2011)

July 31, 2012January 20, 2023 June L

You know how life rolls – everything seems to be going well, you’re in a “happy place”, life is great and couldn’t get much better – and then it seems to bowl you a googly which takes you by surprise and turns your whole world upside down.

My story starts in late 1991. I had just turned 20, had just started my second year of my nursing degree, and life was great. Nursing wasn’t a career I had thought about doing; my first choice would have been an English degree, but I thought that I had better job prospects in nursing – so I undertook a four-and-a-half year Degree if it meant that I could end up like Nurse Duffy or Charlie Fairhead on “Casualty”.

The course was tough, the placements tougher, but I was enjoying it. I had recently got a little Mini to get me to and from all the Hospitals I had to work in, and I had a large group of friends both on my Uni course and in general, so my social life was non-stop. In a nutshell, life was pretty good. In fact, if one song could sum up my life at that point it would be Queen’s “Don’t Stop Me Now”.

Late autumn 1991 arrives. I had a very heavy placement – both physically and emotionally – in a young chronic sick ward. The patients here were all under 50 and had very debilitating illnesses many of which meant that they were utterly helpless. As a result, there was a huge amount of moving patients – mostly using hoists, but sometimes with two nurses physically hoiking patients up the bed. In those days, many of the patient moving techniques that are banned nowadays through Health and Safety, were very much in use. So it came as no surprise that after a few weeks of working in this environment, I felt a dull ache in my sternum. I put this down to having strained myself whilst looking after my patients, and that eventually, probably when my placement finished, it would go away. I thought nothing more of it, and continued as I had been doing to the best of my ability despite being aware that this ache was hampering my practice a little.

Roll forward to spring 1992. Life was still “a blast”. I had had a term in Uni learning all I needed to know about Mental Health nursing to equip me for the next placement which was to be in a mental hospital. During one of my lectures, I had felt my neck a bit tense, so was giving it a rub when I felt a large lump on the right hand side diagonally down from where one’s “Adam’s apple” is. At first I thought it was just a swollen gland meaning I was in for some sort of infection, but then again it wasn’t sore like those glands tend to be. I felt otherwise healthy – the dull sternal ache was still there in the background – but aside from that I was much as I always was.

A week later the lump was still there, but slightly more noticeable. It looked like I had a rather large grape stored under my skin at the base of my neck. I was living at home at the time, so I told my parents who advised me to see the GP about it; I had had Glandular Fever two years previously, and maybe this was it recurring, but there would be no harm in getting it checked out. So I made an appointment and saw my GP a couple of days later; the outcome of which was that I was sent away from the surgery with the words “it’s a strange virus but I’ll prescribe you antibiotics”. Which was weird because I actually felt fine.

It was the week before my 21^st birthday and my Mental Health placement arrived. I travelled the 14 miles to Bangour Village Hospital for my 2 month initiation into the world of mental illness. Although I had been extremely apprehensive about this, I thoroughly enjoyed it. Two things didn’t seem right though. I had completed the course of antibiotics my GP had prescribed, and the lump in my neck hadn’t gone away; and also the sternal pain, (which had been very much in the background over the past few months), suddenly got agonising. It was similar to the pain one gets when breathing through the mouth on a very cold day for a prolonged time, except worse. In fact the sternal pain was so bad I couldn’t put the car seatbelt on, as the pressure of the belt on my chest was very uncomfortable. My next rostered day off (which happened to be the day before my 21^st birthday) saw me at the GP surgery again, this time seeing a different physician who immediately sent me to get a chest x-ray. From thence, things happened very very quickly.

That evening I got a phone call from my GP to tell me that the x-ray had “shown something”, and my blood sample was “abnormal” and that I was to go to the haematology clinic the next day. I had to go there via the GP surgery to pick up a letter the doctor had written to the consultant. He wasn’t sure, but there was a likelihood that I had some form of blood cancer. He didn’t want to scare me, but he was referring me to a Haematologist just in case. So that was it. My 21^st birthday present was to be a scary hospital visit when I would be told if I had cancer or not. With this news, I cancelled the small do that my friends had planned for me – I had to be careful not to tell them why, but to think up another feasible reason – and spent the evening in a kind of blank.

My parents accompanied me to the hospital the next day, they were fantastic in their moral support. After what seemed an age in the waiting room, I was called through to the consultant. Now at this stage in my nursing career I had not come across “haematology” nor many of the terms used within this medical specialty, so I was as clueless as the next person – maybe that was a blessing! The consultant then proceeded to tell me that I was to go for a biopsy on the “node” on my neck – that would tell him what kind of cancer I had. The sternal pain seemed to be linked to this as well, and he was keen to know how long I had had it. Within the next couple of days I was back in hospital for my biopsy – my consultant wasted absolutely no time at all – the result of which indicated that I had Hodgkin’s Lymphoma.

I had never heard of HL before, except that a character on Eastenders had just been diagnosed with Non-Hodgkins Lymphoma and was dying. Was that the same thing? The consultant took his time to explain that HL was different from NHL, and had a better prognosis. HL was usually found in older people, he said – and treatment would be decided once they had done a bone marrow biopsy on me. The next day, on my placement, I told the staff my news. It turned out that one of the male nurses had had a brother who had died of Hodgkins several years before, but that he could tell I would beat it. This nurse ended up being my “brother figure” during this placement, always encouraging me, always looking out for me. The staff in the unit were all awesome – I will never forget how kind they were. One of the patients had crocheted me a blanket for my 21^st birthday, I still have it.

Within a few days, I was back in the Day Bed Ward, this time getting what was the most painful thing done to me – that is, the bone marrow biopsy. To be honest, that was the most painful thing in the whole of my cancer experience. They put local anaesthetic into your back (similar to a lumbar puncture) and, using a syringe, they draw out some of your bone marrow which they analyse. This then gives the doctors a picture of how advanced the cancer is: Stage 1 being very early to Stage 4 being very advanced. My bone marrow result showed that my cancer was at Stage 2, and the haematologist prescribed me twenty fractions of radiotherapy (Mon – Fri for a month).

To be honest, these events sped by so quickly that I had no time to think about them. I don’t remember ever thinking of death or experiencing fear; I was going to be ok – I was determined I was – so I just felt like I was being treated for flu or some normal minor ailment. Other people seemed more worried about it than I was. My friends avoided me – they didn’t know what to say to me, or how to cope with someone their age with cancer; my parents and brother always seemed so strong, and never let their true emotions show. I wanted to carry on with normal life – still do my placements and go to the Youth Group I loved. This weird cancer I hadn’t heard of was NOT going to beat me. Even if it meant being radioactive for a month.

The radiotherapy itself was a blur. I lay down on this table and lead “blocks” (the radiographers called it a “mantle”) were placed above my organs so they wouldn’t get irradiated. Then I had to lie for a few minutes whilst this machine buzzed and zapped at the nasty cancer cells in my mediastinum. And that was it. Painless procedure, but it did make me feel a little nauseous, very tired, and also gave me a stonking fake “sunburn” on my neck, but that was it. It’s funny, but even now there are some songs that were popular at the time that I can’t listen to now without feeling “seedy”.

By this time I was meant to be on a Care of the Elderly placement, and in the month following my radiotherapy I got so shattered doing nothing, that I had to contact the Uni and cancel this placement. My Uni friends all clubbed together and bought me a lovely big cuddly toy and a card; my Director of Studies visited with flowers from the Uni Staff. I was also attending Jan de Vries’ homeopathy clinic, where a lovely doctor, Dr Tan, prescribed me a mistletoe concoction which had tumour shrinking abilities – so armed with that, and the radiotherapy, I was going to win this battle. Unfortunately, my Finals (which happened in Third Year) happened during this period of radiotherapy induced fatigue, and determined as I was to live life normally, I still sat them. Admittedly, I didn’t do as well in them as I had hoped – but I did my best. I was so tired that it was an effort to remember things, and I recall going home with the realisation I had “duffed” my exams.

At my follow-up visit at the haematology clinic a few weeks later, my consultant was delighted at how much the tumour had shrunk, and everything indicated that my HL had gone. The pain in my sternum was no more, and the gland in my neck had vanished. I had beaten it! It almost made me feel like some kind of superhero!

It was then that through the Lymphoma Association, I set up and ran the first and only support group in Edinburgh for Lymphoma and Melanoma patients. It took a lot of hard work, but it ended up a complete success – we had about 15 – 20 people each meeting. Through this group I met Karen, a lass a few years older than me, who had advanced NHL and was fighting for interferon treatment – as this was the last chance she had of hope. She invited me to her wedding – she looked so well at it despite her failing health – and sadly died a few months later. This made me realise how fortunate I was to still be very much alive. Shortly after that, I became hot news in the press – I had newspapers photographing and interviewing me for my story of hope (I appeared in several national papers) and even Prima magazine snapped up my story and dolled me up for a photo shoot at a local castle to accompany an article on me about my Hodgkins experience and work thereafter.

As is usual with cancer cases, patients get followed up for up to ten years after the diagnosis of cancer. I graduated with a 2.1 Honours Degree in Nursing (which amazed me considering how much I knew I had duffed up my Finals), and worked for a short spell in Oncology and then in Pharmacological Research. My consultant’s office was just two floors below my office and he would often come up to see me and check I was doing ok.

After one follow-up visit four years later, I was met at work by my consultant. This wasn’t usual, I thought. He called me down to his office where he explained that the bloods taken at the clinic a day or two before indicated that cancer, in some form, had returned. He wasn’t sure if it was a HL recurrence, or if I had developed NHL or leukaemia. I knew the drill, and I faced his next words with dread……yup, I had to go for yet another painful bone marrow aspiration so that the type of cancer and stage could be determined. This completely caught me off guard, as I was feeling absolutely fine – apart from a cough that I had struggled to shake off from a cold, I was feeling better than I had in years. No pain, no lumps. Was he sure?

The next day, I was back in for the old bone marrow punishment – yes, it was as sore as I remembered it, and an appointment was booked for me to visit the clinic the next Thursday where I would be told the awful truth.

I took what I thought would be 30 minutes from work, and slipped downstairs to the clinic that next Thursday. It turned out that I wouldn’t be returning to work that day, nor for several months afterwards. At the clinic I was told that my HL had returned, and this time it was concentrated in my lung (hence the persistent cough), and that I was to start chemotherapy right then. This chemotherapy would last six months. If after this time it had proved not to be effective then a stem cell transplant would be on the cards. I knew from my oncology nursing experience that patients who get that far only have about a year prognosis – but yet I don’t remember being “phased” by this – I beat it once, I thought, I sure as heck can do it again. The chemo I was to have was one injection and a battery of pills. This would mean my hair would be unlikely to fall out but I would be unlikely to have children. At the time I had only started going out with my boyfriend (now my husband) and kids were the last thing on my mind, as I was doing well professionally, so this didn’t seem too bad a deal. I was glad to keep my long hair – it was my pride and joy! It makes me laugh to think of the frivolous things I thought about at the time.

The chemo was tough – no denying that. The injection made me so sick that at one point I ended up in hospital, as the anti-emetics couldn’t relieve it. The pills made me feel even more nauseous, and the steroids had me up during the night doing the ironing! I couldn’t go to work, so took sick leave. Some days I felt fine, then others I usually ended up desperately sick but I was determined to beat it. Each time I ended up becoming intimate with the WC, I thought “at least I’m getting the cancer out of me”. Once again, my family were pillars of strength – they never showed their distress in front of me, it must have been a total nightmare for them. One lovely man, an elder at the church that we were all members of, visited every Friday evening to support my parents through this time which helped them (and me) immensely.

After six months of chemo (which went on a little longer as one of my sessions had to be cancelled due to low blood counts), I went back to work part-time. Follow-up visits became more and more hopeful. I got married 7 months after my treatment finished – during which time I had been told I was going through a chemotherapy-induced premature menopause. This wasn’t a shock – the haematology consultant had warned me that I wouldn’t be able to have children because of the treatment drugs. It was one of the things I would have to sacrifice in order to stay alive. So life started looking up again. I felt better than I had in years, I loved my job, and I was enjoying married life and setting up a new home. This time I knew, I just KNEW, I had seen the last of HL.

My haematology consultant, to whom I owe my life, was delighted when I brought my new baby son to visit him just before he retired. I was blessed to have had such a fantastic medical team looking after me, an amazing family giving me support, and now a child of my own – followed by a second (my daughter) two years later. Talk about little miracles!

These experiences have been a big huge learning curve – but I have been able to use them in my nursing career. When no-one else can comfort a patient about their fears of radiotherapy, I can and have. When no-one else can inform a patient about how it feels and what to expect from chemotherapy, I can and have. When no-one else can help newly diagnosed cancer patients with coping strategies and how to apply them, I can and have.

I was right – doing the Nursing degree was the right move after all, and I would like to think my experiences with the Big C made me better at my job. Fifteen years on from the last diagnosis, I am officially cured.

“The human spirit is stronger than anything that can happen to it” C.C.Scott

“A strong positive mental attitude will create more miracles than any wonder drug” Patricia Neal

“The most important thing in illness is never to lose heart” Lenin