This is a great blog post from the brilliant Laura giving friends, family, colleagues and acquaintances some excellent advice on what NOT to say to …Guest blog: What NOT to say to a cancer patient
I am not enamoured
Of hospitals, syringes, medicines
Or of the smell of disinfectant
On wounds slowly healing
I am not enamoured
Of you fucking cancer
As you slowly
Of my children
I am not enamoured
Of you fucking cancer
As you stealthily attempt
To take me away
From my children
I am enamoured
Of loving, of living
Dancing, prancing, kissing
Cuddling, hugging, thinking
Smooching, running, writing
I’m not enamoured
I am enamoured of
Sandy toes, tangled hair
The smell of sea air
The sound of waves
The taste of salty kisses
I am enamoured of skies
The rumble of thunder
The flashes of lighting
The giggles of children
I am enamoured of chatter
Natter, gossip, friendship
Of a hot cuppa
I’m enamoured of my life
And you fucking cancer
Cannot defeat me
Today is 18 months since Michael died….it’s really hard to type these words, I haven’t been able to actually utter them in public, only one person has heard me say them (if you’re reading, you know who you are).
I have cried several times today; whilst not as intense as the first few hours, days, weeks or even months, the pain of the last 18 months of his absence is indescribable. My life, and the person I am today, has been irrevocably shaped by the 18 years I spent with Michael by my side. We moulded and changed to fit in with and compliment the other to the point that when he died I felt as if one half of my body, my identity, my being had died with him. I can safely say that, for at least the first year, I didn’t know who I was anymore, I was lost in a boundless, shoreless sea, constantly swimming against a tide that was forever changing, whilst at the same time trying to keep my children safe from drowning; it was exhausting.
I have encountered, at various stages of my grieving process, boundless kindness, the type that made me weep because I didn’t feel worthy of it (yes, grief has the ability to strip you off your self-esteem and sense of worthiness). If I should draw a positive aspect of grieving, this has certainly been one for which I am grateful because in the process some unbelievably amazing people have entered my life and made camp in my heart, and I have no intention of letting them go. I have also experienced deeper conversations and connections with people in subjects as varied as what is love, and whether it is fair that the UK is set on leaving the European Union; whilst not all conversations ended in agreement they have been all mind expanding and welcomed; keep them coming.
I have also faced criticism, judgment, and downright negative comments from people who, in their ignorance of what grieving can really do to you, have uttered the most unhelpful, unkind, and hurtful words I could ever imagine, and definitely didn’t need. I truly believe they did not intend nor understand the pain those words caused me. This experience has taught me to live by the maxim:
Before you say something about a person ask yourself:
- Is it true?
- Is it good?
- Is it useful?
So with this in mind, I set to justify my last paragraph, because admittedly it does not meet all the three criterion Socrates set.
It is true that the words and actions of some people I have encountered in my grieving journey have hurt me and have caused me to retreat into my cave licking my wounds.
It is not good that I am publicly decrying the words and actions of those people, although I am not naming them individually, I am not narrating specifics here, and would never do so, I am doing this because I believe it to be useful, to me at least, but hopefully to others too.
I will explain. The person who is grieving the death of a loved one, is temporarily (and for an unspecified length of time) taken into a warped planet where all societal rules of common sense, politeness and normality are suspended and replaced by a warbled mass of confusion, pain, anger, desperation and hopelessness wrapped in barbed wire; imagined trying to escape that planet to get back to earth! First of all it takes an insurmountable amount of strength and courage to want to escape, second when one has gathered the strength and /or courage, every time one tries to escape, one gets caught in the barbed wire, lashing the already lascerated skin. So next time you encounter someone who is grieving, make sure to either be prepared to speak through the barbed wire so the person doesn’t feel they have to jump through it, or get yourself really big wire cutters, cotton wool dressings and a big pot of kindness salve with you to apply to their wounds. They’ll need it and will be forever grateful.
Thankfully, I encountered many more kind people with big wire cutters and the most magical kindness salve, than unkind people.
These last 18 months have forced me to develop and use tools and skills I didn’t know I possessed or even thought existed. I have had to push through physical and emotional pain, turmoil, and sadness. I have had to re-assess my priorities in life, I have had to see my life’s own script being re-written with seemingly no control whatsoever as to the plot or the characters within it; but most of all I have had to learn to let go, to live each day as it comes, to grab onto every little moment of joy because I don’t know when the next one will come along, and to trust the journey.
There have been moments of utter sadness and desperation, but as time is passing I have learnt to live with the Michael shaped hole which is slowly becoming a scar in my heart, his mark forever there to be seen.
And as time is passing my children are also learning to live with joy too; continuing to develop into kind, rounded individuals, constantly challenging me as their only parent. I often find myself asking “how would Michael deal with this situation?” and actually voicing it to my children…. the truth is that there would have been a discussion between the two of us which would invariably end up with him saying “you seem to have it all under control, gorgeous” I miss that.
Their academic, sporting and social achievements have been many and as a proud mother I can probably write a whole essay enumerating them, but I won’t bore you with those. The one thing I am proudest is of seeing them, having had the roughest 18 months, pick themselves up, dust themselves off and walk with their heads held up high, whilst being aware of the world around them being kind, positive, polite, respectful and above all happy, it makes my heart swell with pride.
I am continuing to run as often as my body allows it and fitting it around my continuing treatment, combined with nearly every day yoga practice, I can see and feel the benefits. My body is coping with and recovering from treatment much better, my sleeping, eating and emotions are in balance and I’m managing to control my body weight. Today I ran my fastest 5 km ever, officially 25:44 (and came third in my age category!)…. as I was running every step was dedicated to Michael and the people I love who I believe give wings to my heart.
Those wings have recently been strengthened by a new special person entering my life and making me believe that it is possible to love again after widowhood. Eighteen months ago I would not have believed that my heart would have the capacity to heal and expand to accommodate a new love again; well today I know it’s possible. Loving again at the age of 45 feels no different to what it felt to love as a teenager, only now I have the life experience behind me which makes me more aware of making sure I grab every moment of joy, every smile, every word said, every moment spent together, and enjoy it. If you are reading, thank you for coming into my life, for accepting me, my past, my present and my uncertain future, and for loving me just as I am.
I now look at the future, which is in no way certain or without challenges, and I am not afraid because I have wings in my heart.
Just like moons and like suns,
With the certainty of tides,
Just like hopes springing high,
Still I’ll rise.
By Maya Angelou
I am painfully aware that Maya Angelou’s poem is all about the African-American Civil Rights struggle, and would never want to fall in the trap of cultural appropriation to make a point, after all I have not had my dignity and rights as a human being thrashed or denied … nevertheless her words resonate so much with me as a woman, the defiance, ever rising against adversity and so the reason for the quote.
My blogging has diminished as my living in the real world has increased… a lot has happened since my last post, some events I am happy to report here, others will have to wait a little before they make it to the blogosphere.
Firstly, I am aware that I kept quiet a very serious event which took place on 11 November 2016; it has taken me all this time to process what really happened and to absorb it. So now I am ready to talk about it more openly. I ran 10 Miles for Neuroendocrine Cancer on 10 November 2016; as it turned out I got lost at the beginning of the run and ended up running a half-marathon instead. I felt great at the end of my run as I had a lot of support from friends, people from the three charities I was fundraising for and staff at Poole Hospital. I finished the day on a high. Nevertheless early in the morning of 11 November I woke up in excruciating pain and was rushed to hospital with a suspected bowel obstruction, which after five days of investigations, tests and scans turned out to be a perforated small intestine. Thankfully the consultants and nurses at Poole Hospital were amazing and took care of me with expertise and kindness. I was looked after by the Intensive Care Unit and after a total stay of 15 days I was home recovering from the second major surgery in six months. Needless to say this was too much for my body to handle and I have only begun to feel myself again in the last couple of months.
I also had some of my closest friends step in and step up to support me and my children (and the dog) in what were really traumatic circumstances. I am forever grateful for their generosity in time and effort as well as their love for us.
According to my consultant, what happened to me was just sheer bad luck, in no way linked to running, unpredictable and unpreventable.
There are unpleasant side-effects to this latest surgery, some psychologycal, others physical, all manageable but not without challenge. I continue to see a counsellor on a regular basis as I have been doing for the last four years. She is a very supportive, professional and intiuitve woman, who by now knows me so well that all I have to do is enter the room and she can guess my mood without me uttering a single word. She’s a treasure to me.
So a little over six months I am running regularly again, getting faster and actually enjoying it. Today I set a new PB (personal best for the non-runners) at my local parkrun of 26:39. I am absolutely delighted to say the least as only in my wildest dreams did I ever imagine runing 5Km this fast.
In the meantime, my children continue to delight and surprise me with their maturity, their kindess and ability to just go with the flow.
Eldest daughter is in the middle of her final exams…. complete social media blackout, I keep sending her the most positive of my thoughts and energy which I hope go a little way in helping her get through this latest stage of her studies.
My son is now a fully fledged army cadet, an activity he is relishing and taking on with gusto. Company weekends seem to be a favourite where he gets to experience life as a soldier, scrubbing floors! Yes he can and knows how to, can I get him to do it at home? You guessed right, nope! Nevertheless, I am pleased to report that the experience is having a positive impact on him as his bedroom is permanently (mostly) tidy.
Youngest daughter is a happy go lucky girl, enjoying school life, with the usual moans about how lessons are soooo boring. She however managed to fracture her right arm whilst playing rough at school; a very painful experience for her and a very stressful episode for me as it happened just two days before we were due to fly out to Italy for a short break.
We were fortunate to visit Oslo, Norway for the Easter holidays and Lippiano (Umbria), Italy for a long weekend at the end of April beginning of May. Both amazing and unique experiences which I’d recommend anyone to do.
In Oslo, amongst many things we learnt how far the Vikings really did travel, all the way to India bringing Buddhism back to Scandinavia, visited the Kon-Tiki museum, learnt about Edward Munch‘s life and what lead him to paint the Scream and were truly humbled by the stories of all the Nobel Peace Prize winners.
Lippiano on the other hand was a more relaxed and nourishing experience; we stayed in Villa Pia a beautiful house on the border of Umbria and Tuscany, surrounded by the most spectacular scenery, with delicious food and coffee served throughout the day, helpful and caring staff and a beauty therapist (Maria Giovanna) who gave me the most amazing massage. HIghly recommended.
In other news, I have started to do some renovating work to the house, which after nearly five years of neglect really needs it, decluttering, new windows, painting, garden reorganisation, the list is long but I am determined to get through it to make sure I add value to the biggest asset I am likely to pass on to my children.
I continue to face the prospect of further invasive treatment to deal wih the remaining tumours in my liver. At present there are no specific dates but it is definitely hapenning this year, so I will keep you posted.
More news to follow…thank you for reading, with all my love
Today is an awful day for me. It’s one year exactly since I was diagnosed with Neuroendocrine cancer. Just two days before I had run my first half-marathon surprising myself by completing it a good 13 minutes faster than my predicted time. So as you can imagine a cancer diagnosis was not what I had expected to receive when I was asked by the consultant endocrinologist to return to the hospital two weeks after a CT scan.
Since that fateful Tuesday all I ever seem to do is count the days till the next appointment, or the days since I last felt well, or the days till the next injection. My life now revolves around meticulously recording symptoms and side effects so next time I see my oncologist or specialist nurse I can discuss at length whether the treatment is working or not. But the truth is no one knows, the truth is I must wait until the next scan where they will be able to see or not whether the cancer has spread. There’s no guarantee and sometimes the severity of the side effects is such that makes me ask myself is it really worth it? How much time is all of this actually buying me? I have been told many times “there’s no cure, your cancer is advanced”.
Having seen my husband suffer through so much invasive and debilitating treatment, I don’t think I want to go through yet more unnecessary pain and discomfort, nor do I want to be spending precious time away from my children whilst undergoing yet more treatment. I want quality of life.
I’ve had a whirlwind of emotions brewing up in the run up of this anniversary, compounded by my having to drive my eldest daughter back to her university accommodation earlier last week, as she prepares to return to the world of academia after a well deserved break following Michael’s death. I was able to keep it together all the way there, however once I was on the way back I cried constantly until I parked my car at home. I was emotionally drained for a few days after that.
At the end of last week I endured a heart wrenching 24 hours period when I realised I had lost my engagement and Michael’s wedding rings. I have been wearing his ring on my ring finger together with my engagement and wedding rings as well as one his ancestors wedding ring. That’s four rings on one finger. Luckily after posting a public appeal on Facebook a local couple contacted me to let me know they’d found them and I was reunited with my rings 24 hours after realising I had lost them. After this experience I’m now looking into how I can get four rings customised into one or two rings to make sure I never go through this horrible experience again. If you know of a jeweller in the sunny South of the UK who’d be up for the challenge, please let me know by commenting below, thank you.
As a last-minute decision I entered the 10k race part of the Bournemouth Marathon Festival. My aims were to:
- test my body
- complete the race injury free
- run the distance without stopping
- get round in 63 minutes
Well I can report I achieved three of the four aims. I ran the whole course, non-stop in 64:50 minutes and I’m injury free, I’ve got the medal to prove it too!. All of this just five months after surgery. I believe these are all good signs that my body will be able to cope with the 10 miles on 10 November; I’m counting the days.
Finally today has also been a reminder of how awful this grieving process is. If the only way people can understand grief is to experience the loss of a loved one I wish I had a superpower that allowed me to stop anyone ever to have to go through it.
Last night the kids started complaining that he house felt cold, well of course it’s october and whilst the days are still mild, the nights are definitely not and as soon as the sun sets a chilly air enters our home. So I started up the central heating system.
There’s a process involved with it, which Michael used to be in charge of, mainly by calling a plumber who would spend a good hour going up and down our attic, up and down our staircase, checking each radiator, firing up the boiler, turning off the boiler, etc, etc, etc. Michael (or I) never bothered to check what the plumber did, just paid the guy and off he went never to be seen again for another year.
Well this year I realised perhaps I had left it too late to call anyone in, they’re all already fully booked and I’d probably have to wait at least a week before someone could come in to get the heating going. Mmmmhh… maybe it was time to take action. I bled the radiators, I knew that was an essential, I also knew that if I shut down all the radiators but the one furthest from the boiler any air bubbles would travel to the one still switched on and it would be easier to get the air out. Well this radiator happens to be in the upstairs bathroom so cue frantic running up and down the stairs, checking the boiler, bleeding the radiator, switching on, switching off, back upstairs, back downstairs, whilst kids complaining it is still cold mummy!
Last night I was knackered, it was 9:30 pm, I hadn’t yet had a shower after cooking dinner, coming back from a run, feeding the children, the dog had yet to be walked, aaaaarrrrgh! so I gave up, but not for long. This morning, I gave up my yoga class as I was determined to get the heating going before the children came back from school. I did some research, Mr Google and Mr YouTube are lifesavers, found out that probably there wasn’t enough water in the system, checked the tank, aha! that’s why the plumber goes in the attic! Tank refilled, I proceeded to repeat all of last night’s actions until tadah! the heating started working. Hence the reason I can sit comfortably in the study to type this post.
However at the end of this (minor) ordeal I sat down and cried, I suddenly missed Michael so much I ached all over. He would have been so proud, he would have given me a big hug and a kiss and would have said that because I had saved him £40 on call out charges, he’d take me out to dinner or go out and get me flowers, or both. I miss him, it hurts.
Instead I’m off to the hospital to be reminded once again how ill I am, to be given a very painful injection, which purports to be keeping the cancer at bay, to start counting the days until I must have the next one.
Hello and welcome to my latest post in which:
- I explain some of the side effects of my treatment
- There’s a preview of what I’ll be wearing to run #10MilesForNETs, and
- I say thank you to those who have contributed to my fundraising.
I am not drunk, promise
I have been trying to clock as many training miles as possible in preparation for #10MilesForNETs but my efforts are being hampered by some nasty side effects from my latest Lanreotide injection, the main one being severe fatigue.
Severe fatigue for me means that I wake up in the morning feeling as if I am drunk. Now if you don’t know me you would probably assume that I’ve been on the bottle and therefore shouldn’t be complaining about the side effects of indulging in a drink too many; however the truth is that I hardly ever drink. I gave up drinking wine of any kind over ten years ago as even a drop left me feeling awful and nauseated. I can tolerate real ale and vodka but in small quantities, typically no more than two in one evening and definitely no more than once a week.
Severe fatigue also means that after waking up I have a two to three hours window within which I have a reasonable amount of energy to do essential things such as showering and getting dressed, preparing and eating breakfast, seeing my children off to school, feeding the dog, tidying up around the house, taking the dog for a walk before I collapse in a heap and need around two to three hours of very deep sleep to recover, and then the whole cycle starts again in the afternoon with children back from school, evening meal to be prepared, driving the children to the different activities, walking the dog, paperwork and bills to sort out, food shopping, before I start flagging again and need to sleep and it is not bed time yet! Sometimes I push myself beyond the point of exhaustion and go for a run even though my whole body is screaming STOP!!!
Some of the other side effects are not very pleasant to describe here but it involves getting acquainted with the colour of the walls and tiles in my bathroom, if you get the gist.
And all of this because I am a zebra. Whatdayamean?! I hear you shout, a ZEBRA?!
Let me explain. In medicine, the term “zebra” is used in reference to a rare disease or condition, like Neuroendocrine (NET) Cancers.
Medical students are thought to assume that the simplest explanation is usually the best, in other words, it is usually correct to look for common rather than exotic causes for disease.
Doctors learn to expect common conditions, hence the phrase
“If you hear hoofbeats, think horses, not zebras.” (NETCancerDay.org), so there, I am a zebra. I always knew I was different!
This is the reason why I will be wearing all over zebra print when I run the 10 miles on 10 November and you lucky people get to have a sneaky preview of my outfit.
I might be biased but, I think the lovely Jackie over at Festival Running has excelled herself by making an outfit that will make me look stylish whilst I’m out there pounding the pavements.
Thankyou, thankyou, thankyou
My fundraising efforts have taken off and I am really grateful to those of you who have contributed; a thousand thank yous coming your way.
I have also had offers of people wanting to join me for part of the route, which I really appreciate as well as it would make the run much more enjoyable. Others have offered to be at the start and finish lines and I have also had offers of cake! It all helps.
The charities I have chosen to support are not very big, they do not have the benefit of huge budgets to spend on advertising campaigns and they do things which make a real difference to patients’ lives.
Every penny donated is put to good use and not spent on running costs, so your donations really make a difference.
If you haven’t yet had a chance to donate there is still plenty of time visit www.justgiving.com/teams/10MilesForNETs
To find out more about the work the charities do, please visit:
NET Patient Foundation: www.netpatientfoundation.org
It has been a while since my last post, a lot of things have happened:
- We now have a puppy
- Youngest daughter reached her 12th birthday
- We marked the sixth and seventh months since Michael’s death
- I returned to running, nine weeks after surgery
- Oldest daughter passed her driving test, yay!
So this post is going to be longer than usual.
The thing with grief is that it is deceiving; it has often happened since Michael’s death when I think to myself that I am coping so brilliantly that I wonder what is it that people
complain so much about the grieving process. And then as if to make sure I do not get so cocky about my own ability to overcome
adversity, it hits me squarely on the forehead and floors me, without notice, rhyme nor reason.
It is the smallest of things such as the fact that four years ago we were all in London enjoying the Olympic Games together as a family of five people, cheering on the amazing athletes and marvelling at their ability to perform at their sport making it look simultaneously easy and extremely difficult at the same time.
This time the Rio Olympics have brought home how different our lives are, without Michael here to watch the whole range of events, the little enjoyment I have experienced is always tinged with the acute sadness of his absence.
Meet Marlo, our puppy
A few months before Michael died, we were at the beach enjoying an unusual spell of warm weather; it was October 2015. As we watched people walk by with a whole range of different dog breeds both youngest daughter and I begged him to agree to us getting a puppy. It had been a recurring conversation whenever we went out for a walk, to which Michael always replied no; however this time the conversation ended differently, he said: “when I am gone, you can get a puppy, you can even call him Michael if you like”.
The night Michael died, our youngest daughter had been staying with friends. She did not like visiting the hospice, as in her words “it was a sad place”. I telephoned with the news that Michael had died, so it came down to our friends to tell her, after the initial shock and sadness, daughter reportedly said “it is ok as we can now have a puppy”.
So late in July we travelled to Brittany in France to collect our beautiful puppy, Marlo, he is a Brittany Spaniel.
He is the kindest, most placid and affectionate creature, very quickly establishing that I am the leader of the pack, to be obeyed and followed everywhere I go. He manages to capture people’s attention when we are out walking by just looking at them with those beautiful puppy eyes.
He is a very quick learner (I have the dog trainer’s word on this one) and so far very well behaved when out and about; he is also exemplar at home, except when it comes to the sofa, what is it with dogs and sofas?
A birthday without daddy
So youngest daughter turned 12 in July. We had agreed that Marlo would be her birthday ‘present’; however there had been discussions as to what she would like to do as a birthday celebration.
When it came to it she decided she did not want any fuss on the day, no birthday cake, no special event. I understood how she felt.
I reached my 44th birthday this June and a combination of my birthday falling on Father’s Day and three weeks after major surgery, meant that I did not want any celebrations and instead wanted to scape as far away as possible from everything that reminded me that the love of my life is no longer here.
Whilst my daughter was unable to express her feelings about her first “without daddy” birthday , I could read the pain in her eyes, so we did exactly as she asked, nothing.
Time flies, yet stands still
On August 15th marked seven months since Michael’s death. For some reason youngest daughter wanted me to watch “Miss You Already” which you might want to avoid if you or someone you love have been affected by cancer. Of my three children, she has found it the most difficult to talk about her feelings during her daddy’s illness and after his death, so it took me by surprise that during the film she started talking about how chemotherapy had affected him, how she remembers the hospice and the effect his death has had on us. The film acted as a catalyst for her; as I sit here analysing the experience I guess it became a non-threatening form of dialogue for her. I was also surprised by how it was me who could not stop the streaming tears and had both the dog and my daughter comforting me.
I shed tears for Michael everyday, I am astonished by how many tears I can still produce and how very small things can set me off. For example as we started out on our trip to France to collect Marlo, I had packed the children and our luggage in the car, stopped to get petrol and made sure I went through the “Michael travelling checklist”, money (tick), passports (tick), tickets (tick).
As we left the outer boundaries of our town the song we played at his funeral “Somewhere Over the Rainbow / What a Wonderful World” by Israel Kamakawiwo’ole came on the radio, cue streaming tears. I couldn’t help but feel both his absence and his presence, as if this was Michael’s way of saying that what were about to do was ok, but of course he was not coming with us.
Every anniversary, landmark, event in our lives now has a bittersweet taste to it. We are, as a family, doing things we did not do with Michael and it feels wrong and out of balance, an integral part of this finely tuned machinery is missing. At times it feels as if the chapter of our lives together was somehow a dream that I made up, and then I look at our children and realise it couldn’t just have been a dream.
On July 30, nine weeks after major surgery, I ran at my local parkrun which are organised free, weekly, 5km timed runs around the world. They are open to everyone, free, and are safe and easy to take part in.
I am a stats mad type of runner and keep a record for every run I do. My personal best for 5km stands at 28:07 and it’s nearly a year since I set it. Of course I was under no illusion that getting back to running after surgery was going to be easy and did not expect to even be able to complete the run, so I was very pleasantly surprised and proud to have completed the 5km without stopping in a time of 38:53. I have been running twice a week since returning and have managed to get my time down to 32:48 in the space of three weeks. I hope improvements will continue and aim to increase the frequency to three times a week very soon.
Sadly a side effect of my treatment is that my energy levels and reserves are depleted very quickly to the point that a couple of hours of normal activity, nothing strenuous, means I need to take regular naps during the day, so after running I am good for nothing for about three to four hours. I am hoping this will eventually improve and I am in constant discussions with my consultant and specialist nurse as to the best way to manage. I do not want to give up exercise or running, it makes me feel better in my head.
On the road
Oldest daughter is legal to drive, it was not easy and it took several attempts for her to pass but it is finally done. Not that she is in any hurry to buy a car as to be able to insure young drivers in the UK a mortgage is required.
She had been practising her driving in Michael’s car which I had kept for that sole purpose, however as she prepares to return to university to finish her degree it is both impractical and financially non-sensical for me to keep hold of two cars, so “Stickers”, as it is affectionately known by us, has to go.
So I made it!
I’ve undergone major surgery and have come through the other side.
I’ve had surgery in the past in fact six times in total, each one as difficult as each other and recovery time was always far too long for my liking. But to be honest the term “major” does mean that.
And whilst improvement in modern surgical techniques means I’m home after just ten days in hospital, it still remains that, as my surgeon put it, major surgery, and particularly the type I had, carries around a five percent chance of death. Ok that means that a lot of people make it but statistics don’t care whether you’re number one or number 100 in the queue, it can still be you who doesn’t make it.
My major surgery involved nine hours, two surgeons (bowel and liver), a specialist neuroendocrine anaesthesist, and all the other theatre staff, followed by six hours in recovery and 48 hours in a high dependency unit where I had one nurse assigned to look after me all the time. I had some machines attached to me monitoring my breathing, heart rate and blood pressure; others delivered essential pain relief, medication to stabilise my cancer (it’s temperamental) antibiotics, all of which I tried really hard to record in my drug-addled, sleep-deprived brain so I could recount it in this post.
I’m pleased to report however that within 24 hours of surgery I was helped out of my bed and was able to sit in an armchair for 43 minutes, and repeated it a day later, this time for four hours.
I’m battered and bruised, in a lot of pain, with more wounds than I care to count. But I’m happy to be home, in my own room, bed and clothes (no more hospital gowns).
I’m totally dependent on others doing everything for me. I can use the toilet by myself and that’s about it, for now*. I can walk 300 metres with a walking stick, although I surprised myself and everyone else by climbing the stairs in my house in one go but that was as much physical exertion as I could take.
The pain gets me down and I do have the right stuff to manage it, but it’s early days. At least I got a good night’s sleep for the first time in ten days.
*not quite true, I can clean my teeth, brush my hair and get in and out of a nightdress. Small mercies!
Yesterday I was told that I will be undergoing a bowel and liver re-section on Friday 27 May. Hearing this has brought a mixture of emotions, mostly terror and apprehension.
Don’t get me wrong, I’m very keen for this cancer to be whipped out of me really fast. The sooner the better. It’s invading my body, it’s alien and it operates on stealth mode causing my body to react in ways it shouldn’t. I want it out, it doesn’t control me but for as long as it’s inside me it behaves as if it has got right of first refusal.
I know surgery is going to hurt, and physical pain can have a detrimental effect on emotional well-being. I don’t feel I’m in a strong position emotionally so I’m just hoping I’ve been able to put enough in the tank to see me through this one.
The list of risks associated with this type of surgery is a long one! I’m not going to recount it here…I’m scared enough as it is, I don’t want to create even more anxiety around me and I’m pretty sure readers won’t really want to know. And if you do want to know, just drop me a line.
I will be in hospital for a whole week away from my children. I’m not relishing the prospect of being far away from them; they’re the source of a kind of love which brings strength to my heart. However I’m also aware that hospitals are intimidating for young people and I would not want them to feel uncomfortable or scared seeing me after surgery.
I just wish I wouldn’t have to be wrestling with these thoughts and emotions on my own. This statement is probably going to have some readers reacting with the usual “we are here for you”, “you don’t have to do this alone”, and I appreciate those sentiments. But it’s not that kind of “alone” I’m talking about. I refer to the alone in the sense of ‘without Michael’ and no one can fit in to his shoes.
I face a long recovery ahead. Although my surgeon and consultant are both confident that, because of my “yuff” and level of fitness, I should need around six weeks to get back on my feet, I won’t be “strong enough to run 10k” as one of them said; so a parkrun should be fine then!
Also the uncertainty of what will come afterwards, treatment-wise, depending on what they find once they open me up, is unbearable right now. I will have a chance to ask questions about the whole procedure but right now my mind is blank; it’s a case of you don’t know what you don’t know.
Call me vain, but I’m not looking forward to a big scar running down the middle of my tummy and the possibility that I will have no belly button afterwards. Never again will I complain about my tummy being scarred by stretch marks because as unsightly as they are, they are also a reminder that I bore three beautiful, amazing and loving children.
On the face of it all, stretch marks somehow seem preferable now.
So today is a beautiful sunny day in Dorset…I’ve been able to appreciate it from my bedroom window; I can feel the warmth of the sun on my face.
My body aches all over, I’ve had a change in my treatment to deal with some of the most unpleasant side effects, but the new medication warns that muscle and joint aches are common side effects. I can vouch for that! Every movement is a huge effort.
Nevertheless I put on a brave face this morning to take my kids to school; since Michael’s death they’re finding the act of getting ready to go to school extremely difficult so I’ve figured that when I get up and encourage them to get ready they are more likely to go to school.
I returned to my bed to a very deep sleep, which has not taken away the achy feeling. So, although the weather outside is beautiful, a dark cloud hangs over me today. I think I’m going to need more than just sunshine to lift this one.