Mostly Joyful, Surprisingly

IMG_20200824_165211IMG-20200827-WA0028IMG-20200829-WA0001normal faceOne of the many trials of cancer treatment is waiting for scan results. We call this ‘scanxiety’. Scan results can change everything and that’s what happened to me.
In my last blog I was fretting over whether to try a chemo regime to stabilise my lungs and get me a few more months. I was bored and scared and went on at length about being bored and scared.
When the latest scan results came through the whole issue of treatment had become irrelevant. In only a few weeks my lung tumours had progressed significantly but much more seriously my brain tumours were growing and multiplying and generally showing their presence; increased wobbliness and a tendency to fall backwards or lurch around in an undignified manner, visual fireworks and occasional blind or blank spots, headaches and difficulty talking, short term memory issues, shakiness in whole torso, numbness in right leg and foot and pins and needles in parts of face and lips. Nothing too terrible or painful but indicative of things deteriorating fast.
Prof said that if I’d asked him for any more cancer treatment he would have refused. I should come off the immunotherapy infusions and from now on it was all going to be palliative. This meant that he was discharging me from his clinic.
Prof has been my oncologist since August 2015 and we have been through a lot together. He has saved my life many times. I won’t go over it all again. It’s all documented in previous posts from 2015. I was crying, not because of the scan results but rather because I was saying goodbye to someone who has been a very important part of my life.
Of course I asked the question…..how long? Prof said ‘a couple of months.’ I had to ask what that meant.
‘One month and possibly another,’ he replied.
This made Thing Two and me laugh. Why did we laugh? I laughed because I’d asked for clarification of the straightforward word ‘couple’. Thing Two laughed because of his joke!
Prof described a neurological death with my vital functions slowly shutting down. A progressive loss of consciousness over an unknown period. He urged us to clarify my plans and intentions re hospital treatment, hospice at home, hospice care etc. I did this a long time ago.
We went to the canteen and Thing Two loaded me with a cup of tea while she got the prescription. Thing Two tells me that I was sad and tearful and blubbing into a handkerchief. I have no memory of that. It’s important to have people around to tell it how it is. I would have said that I was stoical and strong and dignified.
Everyone else was stoical and strong. Not me, apparently. Back home Thing Two went to talk to Grandma and I had a chat with Thing One on the phone.
Over the next few days things began to dawn on me: no more scans; no more blood tests; no more monitoring of temperature, blood pressure, weight; no more needles; no more long immunotherapy sessions on chemo ward; no more clinics, no more hospital appointments, no more frightening admissions to hospital through A and E; no more interventions; no more uncertainty. All of my drugs (and there are still a lot of drugs) were aimed at keeping me comfortable, pain-free and breathing as well as possible. This was it. The end.
I was overwhelmed by joy, by liberation. That was surprising. I hadn’t realised what a gruelling 16 months……no….five years this had been. All my efforts to recover from primary breast cancer had been exhausting. I had worked so hard to regain and rebuild my life through fitness, new work, new relationships, but the threat of secondaries had never left me. It never does.
The worst had happened but here I was: full of joy!
I had a weekend of laughter, singing, playing noisy board games with the Things and their other halves. The increased steroid dose may have made me a little manic but we had some fun.
Ironically, I am feeling better physically now I’ve stopped treatment. I have a new wonder drug which helps me breathe, unlimited painkillers, I have regained my sense of taste and appetite. My stomach is more settled. The steroids mess with my sleep occasionally but I have plenty of other drugs to knock me out. I’ve just had a week at the seaside in Wales and managed to visit the beach, drink gin and tonic, get clean air through my lungs. I’ve been cared for by a group of people devoted to my comfort. I’m so lucky.
Back in Rugby I have an excellent team: my wonderful Macmillan nurse, a team of district nurses, GP happy to fulfil all of my prescription needs without quibbling. In due course there’s Hospice at Home and then the Hospice itself, either for respite or for THE END.
I am counting down on my tablet to the couple of months predicted by Prof. Today it tells me that 12 days have passed since I saw him and I have 42 days until Death Day.
However, I have things to do and I’m quite certain that I will be here well into 2021. In September my gorgeous other half and I will celebrate three years of putting up with each other’s foibles. (I think he may have more to put up with than me, lol.) We have a number of dates planned, mostly involving picnics with the wheelchair. Thing Two has a very busy time at work over the next few months. Thing One is also flat out at work and undertaking some vital training in October. In November Thing One and partner are moving flat. December is Christmas and I will be required to support Santa Claus in his efforts to visit the 5 or 6 young people who will be here. And it would just be bad manners to die at Christmas or New Year wouldn’t it?
I’m also still working on the book, still attempting (with shaky hands) to crochet the rabbit for my grandchildren. What grandchildren? There may be some one day and they will have a wobbly rabbit with a load of fancy crocheted clothes plus various other items I’ve created over the years. I’ve also discovered a gap in the market for Christians approaching death who want a bit of a challenge in their praying or reading. I’m going to hunt down some texts, verses, stories that aren’t totally CHEESEY. I also have friends going through hard times to support in the best way I can although I’m horribly self-centred these days. Seeing people is very tiring so I’m having to be strict about visits. I can’t cope with more than one person at a time and half an hour max. Not much of a party animal anymore.
What I really want is a great big funeral with none of the Covid restrictions. I want everyone to come (and that means you!) and sing their hearts out to the lovely hymns I’ve chosen.
If Covid messes up my funeral and it’s a sad small affair I want you all (and that means you!) to write letters on proper paper to my daughters telling them how wonderful I was and all the laughs we had together and ways in which I helped you and you helped me. And have a sing and a substantial drink on my behalf.
Pollyanna Moment:
It’s all Pollyanna at the moment for me. I didn’t expect to feel so well nor so happy, nor so loved at this stage. I have a wonderful family and amazing friends and they are all still with me, sending messages and cards and presents and making soup or stews for us and visiting sometimes and understanding when I can’t cope or speak or see them. If I need a silent day in bed I am provided with cups of tea and marmite on toast. It’s all fine. I’m fine. All shall be well.

Bored and Scared

normal faceI am bored and scared. Sometimes I’m a bit more bored and a bit less scared and sometimes I’m a bit less bored and a bit more scared. Sometimes I’m really really bored and really really scared.
I’m bored because I’ve had enough of scans, immunotherapy, consultations with Prof; I’ve had enough of breathlessness, wheezing and chest infections (six so far this year), trying to talk to the GP and get the antibiotics and steroids I need urgently (“No, a GP call back tomorrow is not acceptable!”), I’m tired of needles, I’m tired of never knowing from day to day how I’ll be. Actually, that’s not entirely true; I know that I’ll be even more wiped out than usual in the three or four days after immunotherapy; I know that after talking with people or doing anything social in the garden I will be exhausted. I get so excited when people visit the garden but then I pay the price. It’s boring!
Lockdown has made things worse for everyone but has ensured we special and precious ‘extra vulnerable’ people are even more limited in our activities and social contacts.
And my cocktail of drugs can send me loopy. I was on a very high and slowly reducing dose of steroids for seven weeks in May and June and on occasions had intrusive and distressing thoughts and images of child and animal cruelty. I heard voices singing to me in bed. I saw faces coming out of the ceiling. I revisited questionable decisions I’d made in my life. I suffered guilt over selfish or bad or mean things I’d done in my life, including not being very nice to Debbie ONCE ……AT PRIMARY SCHOOL! But thanks to the steroids I could breathe.
I am normally a very ‘in-the-moment’ and mindful kind of person, particularly these last few years. I am not in the habit of dwelling on old stuff that can’t be changed. Let’s face it – all big decisions are questionable with the benefit of hindsight. Fortunately, I came out of this phase as the steroid dose diminished. But there are random days (two last week) with terrible headaches when I’m told that I am talking rubbish, repeating myself and forgetting what has happened two minutes ago. And weeping incessantly.
So, what am I scared of?
On 2nd June I found out that my immunotherapy was no longer working: my brain was stable but my lung tumours had grown in size and multiplied. There was new growth in my left shoulder and in one vertebra. It was a shock. Prof raised the topic of chemotherapy alongside immunotherapy.
YOU KNOW HOW I FEEL ABOUT CHEMOTHERAPY! I am scared of chemotherapy.
Prof also knows how I feel about chemotherapy. The drug he would normally recommend (Kadcyla) needed further investigation as he’d heard that it caused radionecrosis in the brains of those who’d had cyberknife radiotherapy. We met a few weeks later and he confirmed that it was contra indicated. Instead he recommended Vinorelbine. Without treatment I had ‘months’ (two? eleven?) and with vinorelbine he would consider six months a success. But then, as he keeps reminding me, I should have died last Autumn so anything could happen really.
I said I needed a few weeks to think about it and we agreed that I’d have fresh CT and MRI scans and then meet 28th July to agree the way forward.
I have spent the last three weeks trying to decide what to do.
I’m scared of what the scans might show. What if things have progressed very quickly? What if the brain tumours are growing again? There’s been no treatment for the brain since last October.
I am scared of vinorelbine. I have done lots of reading about it and Prof also arranged for me to talk to one of his patients who’d been on it for eighteen months. She described it as very ‘doable’. It is generally accepted as less toxic than many chemotherapy drugs. As with most chemotherapy regimes experiences on vinorelbine vary though: from mild stomach upsets and tiredness right through to debilitating diarrhoea and vomiting, joint and bone pain, neutropenic sepsis, blood transfusions, admission to ICU.
I’m scared of the possible side effects of vinorelbine. I’m scared of having to go through the A and E ordeal. I’m scared of being admitted to hospice or hospital with diarrhoea or neutropenia, not being able to have visitors, never coming out and dying alone.
I’m scared of possibly losing my hair for the third time.
I’m scared of not doing vinorelbine.
If I don’t do it the tumours might ‘flourish’ (Prof’s word) and I might deteriorate very quickly. Forget quality of life and bucket lists. And I will always wonder if vinorelbine might have been the one chemotherapy drug that I would have tolerated, that would have represented that elusive holy grail – shrinking cancer and life of a decent quality.
I’m scared of wearing my family out with my care. The anxiety about my treatment and its effects, my uncertain prognosis, my fluctuating wellbeing and mental health, the many hospital appointments all put a lot of pressure on everybody. At the same time my loved ones are dealing with their own stress about living through a global pandemic.
I’m scared of being a burden. It was honestly easier last Spring when we all thought I’d be gone by the end of the year. I am going slightly mad, knowing that I could die any day from Covid 19, or from chemo side effects, or just from the cancers……or I could just go on and on and on getting increasingly disabled and everyone will be fed up with me and my needs.
As I write I think I’ll give vinorelbine a try. I can always stop if it proves too awful. But I’m scared. People are always telling me that I’m ‘brave’ and ‘strong’ and ‘amazing’ which is very kind of them. But it’s not true. I’m so scared.

Pollyanna Moment:
There are many good days when I can write and crochet and do some admin jobs and chat to people in the garden. With the Things I laugh a lot, play card and board games, go for short walks or drives (not to the hospital). And we talk. One wonderful thing to come out of this awful lockdown is that I’ve had time to talk with the Things who have been looking after me. Since the Things left home at eighteen and seventeen we haven’t had so much time together. It’s a privilege for me. Tough for them though. What great people the Things are. They’ve really stepped up and I’m so proud of them. I also thank God for my McMillan nurse who understands me, can joke with me about the darkest subjects and is a voice of reason amidst the madness.
Despite everything I’m still interested in people. I still get the giggles. I can still recite poems I learned at Primary School, much to the delight of my companions.
I’m still me.

Privacy, Scans and Scanxiety

 

I am in the shower with a very nice lady. We first met about ten minutes ago and she did introduce herself but I’ve forgotten her name already. My companion is fully clothed and is wearing white wellie boots. There’s a hint of the abattoir about the wellies. I am naked, of course. She seems very nice and quite relaxed but I am not. This is my first trip to the shower in the hospice. I arrived yesterday. Despite having had weeks of this kind of help at home I am still not accustomed to having company in the shower, nor help drying and dressing.
‘They don’t mind,’ friends and family assure me. ‘It’s their job.’
They’re missing the point. I mind. I know I should be grateful for the help and I am grateful, really, I am. But I am a fifty-three-year-old woman who hates being defined as a ‘fall-risk’ and who prefers to shower alone.
I have had a couple of falls at home. My home is now full of grab-rails, strategically placed around toilets, shower, stairs and steps. At home I have a nurse who helps me to get up, clean, dressed and downstairs and attempts to give me breakfast. The nurse can arrive anytime between 8.30am and 10.30am. It’s not great, lying in bed at 10.15, waiting to be ‘got up’ so I tend to just go for it around 9.30am and I manage, sort of, until my big toe gets stuck in my knickers or I drop my glasses and have to wait for her anyway, my teeth grinding. It exhausts me, getting dressed. My feet seem to have got further away from the rest of me so socks are impossible, I have to sit down for a rest after each item and I get out of breath. Help helps. Definitely.
I’m making it sound like there’s a single person but there are many and I never know who is coming. They let themselves into my home and I tense up as I hear their footsteps on the stairs. They appear at the bedroom door, always kind, always cheerful. I’m relieved to see them, yet just a bit angry about needing them and having to wait. And about having to answer the same questions again and again with different people. My life is no longer my own; everything I do, say, eat, read, drink, write, wear, make, listen to, watch, receive in the post, is subject to observation, scrutiny, comment, recording, and question by professionals and loved ones. When I walk up and down the corridors here with my wheeled walker everyone has to comment on my ‘little walk’. I have no right to a private life now that I need so much help. I can’t remember agreeing to this; it seems to have just happened. I can’t go anywhere either. My driving licence has been returned to the DVLA. I cannot jump into my car and go wherever I like. Take a moment to think about that. How would you feel? Every trip needs a partner-in-crime and proper arranging. Even in the hospice I am supposed to be accompanied when I push my wheeled walker up and down the corridor. I have a chart on the wall that says so. I ignore this and go alone.

Here in the hospice they are switched on about privacy, dignity and respect. Our rooms are as nice as they can be given the need for multiple plugs and weird beds. We are encouraged to bring in personal items such as photos. Windows in our doors can be obscured although only from the outside. It’s a long way from the six -day hospital stay I endured at the end of August (admitted through A and E with high temperature). Unlike the cancer ward, the hospice is quiet, and the comfort of patients is paramount. It’s a surprisingly cheerful place and each room has its own patio garden.  I spend hours resting, just watching the trees swaying in the wind.  The doctors here discuss my treatment with me at length and listen, properly listen, to what is coming between me and the ultimate goal which is quality of life for my remaining time on this earth. For me, this is eliminating the overwhelming nausea. They also show concern for my state of mind, for what is bothering me not just physically but also psychologically and spiritually. On arrival my confidence was at an all-time low and constant nausea, diarrhoea and fatigue had made me wary of leaving home at all. I was encouraged to come here for a treatment review by a local MacMillan nurse in Rugby and I was sceptical, even pessimistic. But I’m glad I came. The staff here at Myton Hospice in Coventry give me time. Precious time. The nurses, volunteers and all staff treat me with respect and respond to my needs very quickly. I can’t fault them. One night I talked to a nurse about dying and she answered my questions fully, understanding that this was important to me. When I apologised to her for keeping her from her work she answered ‘This is my work.’
So, what is the result of this hospice stay? Two weeks ago I was barely able to speak, taking up to twenty pills a day, including the horrible steroids, to try to address the problems in my digestive tract. Fixing them was not a simple matter of withdrawing certain drugs since the source of the problem is one of the brain tumours. This little bugger was also affecting my sense of smell making me ridiculously sensitive to odours, sending coffee drinkers to other rooms and retching rudely at the smell of perfume, deodorant or food. I was shaking like a leaf and needed the wheelchair. Two weeks later I no longer shake, I can walk up and down the corridors with the aid of a wheeled walker, I can talk, I can smile, I can type this blog, I can crochet as the shakes have gone. I am down to four drugs; the main drug is pumped straight under the skin in my belly over twenty-four hours through a syringe driver. This subcutaneous delivery has sorted out the nausea. Just like that! It took a few days to get the dose right but now I rarely experience that disgusting wave of sickness that made me so miserable. The syringe driver is in a mahoosive plastic box that I have to lug around with me and hug in bed. The plastic tube goes from the driver into a cut in my belly. Because I am special my skin reacts to the sites and goes blue and purple so they have to keep re-siting the incision. I don’t care. I’m so ridiculously happy to be free of nausea I will put up with all kinds of medical fiddling and needles (I’ve lost count of the needles).
I want you, my lovely reader, to take a deep breath and thank God, or your lucky stars or whatever for your nausea-free state. Don’t take it for granted; being nauseous is hideous. A happy digestive system is a prerequisite for true contentment. Mine is healing from all those horrible pills and I am COMFORTABLE! ‘Comfortable’ is one of those medical terms that can be annoying (like ‘sharp scratch’ as a needle is plunged into you, or ‘discomfort’ meaning pain) but I know what I mean as I curl up in my mum’s lovely dressing gown and relish my nausea-free status and pain-free gut. I am comfortable.
Numbers
Since being diagnosed with secondary breast cancer in March I have had the following:
5 GP consultations
8 consultations with oncologist
21 consultations with other doctors in hospital or hospice
1 surgery
1 bronchoscopy
8 immunotherapy sessions with Herceptin and Perjeta
1 chemotherapy session with nab-paclitaxel (discontinued after 1 session).
5 radiotherapy sessions
5 days as in-patient in UHCW in March, 6 days in August
18 days to date in the hospice but hoping for home by the end of next week
10 x-rays and scans of lungs, heart, torso and brain
1 ultrasound
About one million blood tests
Pollyanna Moment
Every scan gives rise to anxiety. We in the cancer business refer to this as ‘scanxiety’. My latest scans give reason for hope; my lung tumours are responding well to the immunotherapy except for one toe-rag which has mutated and is growing. This naughty tumour was the reason for us having a go with the chemotherapy drug nab-paclitaxel. One weekly session was enough for me and we’re not going to do that anymore. The whole brain radiotherapy which I was dreading has had a response described as ‘stunning’ by Prof. Pollyanna is very, very glad about this. It’s fabulous news and even better, the remaining tumours are small enough to be considered for the more precise ‘cyber-knife’ radiotherapy. Next week I am visiting Queen Elizabeth hospital in Birmingham to discuss this. Wouldn’t it be wonderful if the cyber-knife treatment could knock this nausea tumour on the head for a while? I keep catching myself smiling and feeling hopeful. Wouldn’t that be great? I wouldn’t have to lug the syringe driver around in a bag. I might not have to have twice daily injections either. Then I could really have some quality time with friends and family, being me, not the moaning, miserable suffering creature they’ve had to put up with. All I want is to be able to go to a café with confidence, or to visit the arboretum at Coombe Abbey, or to misbehave in my wheelchair in Debenhams. My needs are very modest. It’s not crucial to my happiness that I travel across Russia on a luxury train, or swim with dolphins, or visit New Zealand. I’m a very cheap date.

On Treatment and Being Crabby

 

 

keep-calm-and-put-the-kettle-onTreatment sounds good, doesn’t it? Something is happening. Something is being done. And it includes the word ‘treat’ which sounds like pedicures and nice massages, prosecco and chocolate truffles.
But cancer treatment can be hard. You can see how hard by comparing three photos of me, one taken on the 11th May this year before active treatment really got underway and two taken two months later in mid July.

 

Fat cheek steroid bloating, eyes watering, hair loss. I’ve definitely hit rock bottom. Of course, I can tart up a bit, as shown in third picture. Eyebrows created, foundation and blusher, lippy, eyeshadow, headgear…but there’s no getting away from that steroid neck and chin and the belly bloat. The less I eat the more weight I gain. It makes no sense. It’s one of many humiliations.
I am trying to hang on to some independence and dignity but the fact is that I cannot drive anymore (I’ve had to surrender my license to the DVLA. For the first time in over thirty years I have no driving license) and I cannot go out without someone to hang on to. I am completely dependent on others. Others are very kind and patient but that’s not the point. It’s summer and you are all going on holiday and sending me pictures and news of your activities and there are times when I have been barely able to get down the garden to see my chickens without stopping for a rest. My world is shrinking. Climbing the stairs to bed can take minutes and I have to rest before and after getting into pyjamas, brushing teeth, before laying down.
Radiotherapy hit me very hard and Prof tells me that the fatigue will continue to worsen over the next month. Here I am, bolted to the table for my last dose.

mde

mde

My face swelled over the week and by the last session the mask was so tight that I was only able to breathe by sucking air through my teeth. The radiotherapy team were lovely but I was glad when it was over. For two weeks nausea made me miserable as my brain swelled from the radiation. I struggled to eat and drink. I was dizzy and my scalp burned, then I started to moult like Bertie used to, leaving little clumps of hair everywhere. I was very irritable and just wanted to be left alone. No visitors. No fuss. After two weeks the nausea eased and I felt more like me again. This was timely as I hosted a family party to celebrate the Things’ birthdays and Excellent Big Sister’s 60th postponed from March. I had a whole team of helpers and delegated absolutely everything and it was a wonderful, joyous occasion.
Last week my brother took me to see Prof at UHCW. Prof is impressive. Prof is working on giving me both quality and quantity of life and there is no sense of anyone giving up. And he is honest about the unknowns, the variables. There are a number of plates to keep spinning here. (We never see anyone spinning plates anymore on the telly do we?) There’s the multiple pulmonary matastases (lung tumours), bilateral hilar and mediastinal lymphadenopathy which have now had three blasts of intravenous immunotherapy. Has this achieved anything? I will have a CT scan next week to see if anything has changed and also to check for further spread. Then there’s the chaos in my brain. I have numerous tumours and they cover every part of my brain, every lobe. It’s too soon to assess whether the radiotherapy has achieved much; we have to wait till the end of September for the swelling to go down and do a MRI. Prof talked about additional chemotherapy in the form of nab-paclitaxel (abraxane). I know this drug. I was switched to it after docetaxel led to two emergency admissions with my insides melting. Nab-paclitaxel was gentler on my insides, definitely. However it made my bones burn giving me the worst pain that I’d ever experienced in my whole life and also led to my third emergency admission and long stay in isolation due to pancytopenia in 2016. I only managed two infusions of nab-paclitaxel last time then had to stop chemo altogether as it was going to kill me. Last Tuesday Prof said that he had managed to get lower weekly infusions agreed meaning that I wouldn’t have a whopping three weekly dose. This probably means that I would feel a bit terrible all the time but wouldn’t have the crises. I don’t want crises. I hate being in hospital and I hate giving extra stress to my loved ones who have to see me suffering. Prof stressed that the brain tumour symptoms would probably be worse than the chemo and said that some of this drug might cross the brain barrier and have a pop at my tumours. Probably….possibly…..
So refusing the nab-paclitaxel would not necessarily mean that I felt better. Symptoms of the brain tumours would probably be worse.
I do have a variety of disturbing symptoms at the moment. Tinnitus, shaking hands, occasional loss of vision, dizziness, pressure in my head, imagined conversations, sudden mood changes, losing words, forgetfulness, irritability. How do I know whether these are from the brain tumours, the immunotherapy infusions, the oral drugs, or the whole brain radiotherapy? I thought the numbness in my right leg and foot were a side effect from Herceptin and Perjeta but Prof assures me that this is due to one or more of my tumours. He warned me about psychosis and paranoia, strong and sudden changes in my emotional state…
At times I felt like the most upbeat person in the room. I was doing OK last Tuesday. Well, I thought I was.
The decision about chemo is academic at the moment as Prof says I am not well enough to tolerate it. So I’m not going to waste time thinking about it.
It’s more complicated than being stuck between a rock and a hard place. A rock and a hard place would be easy. I’m much more comfortable just focusing on today. I still feel like me, just on a shorter fuse. I don’t think my personality has changed drastically. I know it might and I’m going to issue a blanket apology now to cover me turning into a psycho killer, a zombie or, worst of all….a Conservative voter in the future.
Back to the topic of treatment: Four hours on chemo ward last Thursday having my third infusion of immunotherapy. This sounds so benign, doesn’t it? Like some sort of hippy probiotic to boost my immune system. In fact Herceptin and Perjeta are powerful drugs with unpleasant side effects and I was hit hard with nausea, diarrhoea and further exhaustion. For days my only activity was getting to the loo on time. At the same time I was getting texts from friends along the lines of ‘loved the photos of the party, it’s great that you’re feeling better and doing so well’. ‘What the hell…?’ I think. ‘Don’t they get it?’ Mostly I don’t answer these texts, nor do I usually reply to the ‘how are you?’ questions. I don’t want to talk about that. I know that I am increasingly crabby and unreasonable. Sorry, sorry, sorry.
I am in a Facebook Group for people with secondary breast cancer. This is a very helpful and informative group where we share experiences with drugs, side effects, hospitals, hospices etc but also we talk honestly and openly about how we really are without the constant pressure to be upbeat and positive all the time. (The relentless desire to put a positive spin on everything sickens me. Surely it’s acceptable for people with a terminal diagnosis to be a bit sad or angry from time to time. In my experience you have to let these so-called ‘negative’ emotions in, let them flow through you, be angry, be sad and they pass through and you feel better tomorrow. ‘Strength for today and bright hope for tomorrow’ as my favourite hymn says.) Anyway, in the Facebook group the ‘how are you?’ issue came up. One member asked ‘why doesn’t anyone ask how I am anymore?’ Replies fell roughly into two camps. Half wanted to be asked how they are and the rest of us absolutely hate being asked this question. So I do understand that it’s hard for my friends and family to get this right and I know that these questions come from a place of love for which I thank you.  Please don’t be offended if I don’t reply.
Today I am feeling better and stronger, hence I can finish this blog. Able to walk a bit. But never too far from a loo. I am still guzzling loperamide hydrochloride by the handful and dreaming of the perfect turd-shaped poo with edges. One that comes out cleanly and doesn’t leave you sore and griping. In heaven I will always do lovely, satisfying poos with edges.  Heaven is a happy, functioning digestive system.

Polyanna moment:
This has to be the wonderful family party. Such a very happy day with lots of laughter, silly family games, good food and fun. A perfect day celebrating three wonderful women.

Needle count:  48
I love my port. It has taken away virtually all of the vein-hunting misery.   I now know that I can even get it plugged in for CT and MRI scans with contrast if I book myself into Chemo Ward for it to be hooked up.

The blog I never wanted to write: Stage 4 Breast Cancer

keep-calm-and-put-the-kettle-on

Despite having no breasts I have stage 4 metastatic breast cancer. It has spread to my lungs, the lymph nodes in my chest, and my brain. I have multiple tumours.
I last finished active treatment in September 2016 ; the lung tumours were found two and a half years later in March 2019. My work colleagues noticed my breathlessness and prompted me to go to the doctor. I told him that I had asthma and needed an inhaler. I have never had asthma before. I refused to go to A and E. It is possible that I am a difficult patient but my GP knows me well and works with my quirks. I consented to an x-ray of my lungs which he thought sounded ropy (my peak flow was more typical of a 40-fags-a-day addict than a non-smoker). The next morning he phoned and told me that my x-ray was giving him concern and I needed to be admitted to hospital. He had arranged this. No need to go through brutal A and E.
“I can’t go to hospital,” I insisted. “I’m throwing a party for my sister’s 60th birthday on Sunday. I’m doing all the food and making the cake and hosting.”
We had a little argument about that. Since my second mastectomy in January 2017 I had resolutely avoided hospitals and doctors, reluctantly attending my follow up appointments with the oncologist, keeping my head down, trying not to breathe in the hospital smells, trying to be a normal person who is so much more interesting and busy with non-cancer stuff. Trying to move on from cancer. My experience of hospitals is that
– Once they get their hands on me they keep me in
– There’s never any good news
– Worst of all……I become a patient, a problem to be solved
In the end I caved. The party was postponed. Instead of having a party my excellent big sister and the rest of the family spent days travelling to and from hospitals in Coventry and then St Cross in Rugby. I held out for pneumonia of something simple that could be treated. Maybe some weird lung infection from a rogue mosquito lost in Krakow in November where Other Half and I had holidayed.
My brother was with me for the results. A CT scan confirmed the diagnosis of lung mets and my world rocked. An appalling bronchoscopy (waterboarding anyone?) identified the cancer as HER2+ breast cancer. A rogue cell had remained in my body from 2016 and had been up to no good.
A week before hooking up with my oncologist I started getting intense pain in my head when I coughed or moved my head suddenly. When I mentioned this to Prof everything became a bit scary. An urgent CT scan was arranged and there on the screen a couple of hours later were brain tumours. Prof explained that this changed everything. With the lung mets we had been talking about doing some chemo and getting a few years. That seemed bad enough. Readers of previous blogs will understand exactly how much I never want to do chemo again. But things were about to get worse: these brain tumours changed my prognosis drastically. I had a MRI scan the next day and this showed more and bigger tumours. I told you….there’s never any good news for me in hospitals. They are seriously bad for my health.
Brain tumours do not respond to chemo. The clever brain puts up a barrier which chemo cannot cross. Instead brain tumours can be treated in all kinds of sophisticated ways these days, notably through the cyberknife radiotherapy method. However, if you have multiple whopping tumours snaking through your brain then the experts at Queen Elizabeth Hospital in Birmingham won’t accept you for cyberknife. Instead you are offered the radiotherapy equivalent of a sledgehammer to your skull- whole brain radiotherapy. This blasts your whole brain with radiation in the attempt to reduce swelling and pain and give patients a better quality of life for as long as possible. In the short term it causes fatigue, irritability, hair loss, skin burning and a temporary increase in pain as the brain swells. It leaves patients with cognitive issues (e.g.inability to concentrate, forgetfulness) that worsen over time. Since candidates don’t have much time this is felt to be worth the risk. The pain I experienced in my brain is unbearable so I am willing to do it. This starts tomorrow. I have had a mask prepared. This will be used to bolt me to the table during treatment. It is very tight – I cannot open my eyes or mouth and have to concentrate very hard on going to my happy place. I am good at this. No panic here. All is calm.

mask
In the meantime other fun treatments have been available. Massive doses of steroids have swelled my face, neck, upper belly and ankles like a toad, weakened my muscles and given me gut issues. My cheeks are so fat that my glasses rest on my face, not on my nose. I am guzzling gastro-resistant tablets and immodium in bucket loads and longing again for a poo with edges. The steroids have improved my breathing and brain pain massively so they are worth it.
I am also back on chemo ward every three weeks having Herceptin and Perjeta infusions for the lung tumours. These are immunotherapy drugs designed to slow the growth of the HER2+ cancer by blocking off receptors. Main side effects so far….fatigue, more diarrhoea, numb feet and legs , dry mouth. I should be having paclitaxel but I would have to do it for six months to get any benefit and none of us want me to be put through six months of that when I may not have six months.
I have a DS1500 which is a magic certificate indicating that I am not long for this world. This has enabled me to get PIP and a disabled badge. My GP assures me that if I do live longer than six months no one is going to turn up at my door with a gun.
I fully intend to live longer than six months. No one is giving up here. The world is full of people living longer than the docs thought they would.

Polyanna moment:
I am surrounded by family and friends who are, once again, showing what incredible people they are. I have a veritable army of support. I have people shopping for me, cutting my grass, cleaning my chickens, giving me lifts (I am not permitted to drive anymore due to the brain tumours and bizarre visual disturbances), ironing, picking up prescriptions, just dropping in for a chat, taking me out for lunch, travelling long distances to visit me propped up on my sofa, sending me cards and presents, praying with me and for me. Yesterday wonderful colleagues from Vets4Pets did a Race for Life in my honour. I have amazing, incredible daughters who make me proud daily. My faith remains strong and my spirits are good. I know the future will bring challenges to us all but today is a good day. I feel loved. What more do I need?

Needle count
42
Hollow laugh here. My veins are still elusive and I have had a new port implanted in my chest for chemo infusions. This doesn’t help with contrast scans and I am regularly covered in bruises from being slapped around in an attempt to access a vein. I am not allowed to slap back, apparently.

Stupid Brain

 

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I am annoyed with my brain.  My brain is not playing the game.  My brain is letting me down.  Stupid brain.

The rest of me is doing very well, thank you. I have a paid job, a social life, a new squeeze, a whole gang of animals and young persons to clean up after. I eat healthily (apart from the serious diet car-crash around Christmas) I exercise regularly and deal with chronic pain stoically, my upper lip resolutely stiff. I take my pills. I make myself attend social events and usually manage not to run away, nor insult people. I hosted family and friends at Christmas and New-Year’s Eve. I am clearing out wardrobes and drawers and book-shelves adhering to the ‘Swedish Death Cleaning’ method. I file my knickers and socks vertically as recommended in Maria Kondo’s ‘The Life-Changing Magic of Tidying’. (Filing one’s knickers vertically is truly magical.) Anything that doesn’t bring me joy has to go. I have to allow stuff to move on to a new life junking up someone else’s house. This is called ‘letting go’. Many items in my house fail to pass the joy test and are let go. I am quite a regular at the local tip (sorry….my local ‘Recycling Centre’) and the charity shops in Rugby display my wares in their windows. There is a possibility that I am being too fanatical in my approach; perhaps one day soon I will find myself in my once-cosy-but-now-stripped-bare living room looking at the floor with a critical eye.

‘Does this laminate floor bring me joy?’ I will ask myself. ‘What about the plaster on the wall? The plug sockets?’ I will turn to Things One and Two and the menagerie of animals and consider whether they pass the joy test. Undoubtedly they do bring joy from time to time but is that enough? Surely the joy should be consistent. Should they be recycled?

Jobs that have needed doing for years are finally being tackled; the shed has a new roof, the shower no longer leaks, doors shut properly, there is a functioning cat flap. This is all good.

It is two and a half years since my cancer diagnosis. It is nearly twelve months since my second mastectomy. Time rolls by and I try to forget.

But I cannot forget. Cancer is everywhere and I have friends dealing with it right now. The TV shows images of jolly ladies in headscarves laughing and joking their way bravely through chemotherapy. (I absolutely loathe those adverts). And my brain keeps taking me back and replaying stuff. I re-live the moment when I was told, in one devastating sentence, that I had cancer and would need a mastectomy. This scene is replayed in my head four or five times a day and the memory makes my stomach roll and cold sweat break out. I also experience certain kinds of pain again, particularly the terrible bone pain in my legs. Clearly it is not real pain, yet I react to it as if it were. I have nightmares that there is something growing under my skin; I know it’s there but I cannot convince anyone to take it seriously. It moves around my body and I wake, clawing at myself. Going to the dentist makes me shake. In the dentist’s chair, having stuff done to me, having injections….it brings back that feeling of being a patient, a problem body to be poked, prodded, examined.

You might not notice that I am going slowly crazy. I hide it well. I am very cheerful and positive on the outside and that is what most people see. At the dentist’s I joke and laugh and no one would know that inside I am in turmoil. I have kept my bonkers state mostly to myself and it’s hard to write about. That is why there hasn’t been much from me lately. I am embarrassed and feel like a failure. I am also angry. It was bad enough going through all this rubbish once but having to re-live it again and again is just stupid. It’s two and a half years. TWO AND A HALF YEARS!

However, when I started this blog I vowed to be honest and to say it like it is. So this is how it is.

Pollyanna moment: Our excellent NHS is supporting me with psychological therapy through IAPTS. I have had two phone consultations and one face-to-face and I am told that I have PTSD (Post-Traumatic Stress Disorder) following multiple instances of trauma. I am told that I can be taught techniques for dealing with these intrusive and invasive thoughts and feelings and that the prognosis is good. I will have regular appointments to support me in learning how to stop this rubbish. I am glad that I finally talked to my GP about what I was going through. Well done me.


 

Any Idiot can face a Crisis

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Any idiot can face a crisis- it’s this day to day living that wears you out. Anton Chekov may or may not have said this. Someone said it.

Now I’m brave because this bit is tough.

When we are facing possible death and certain pain things are very simple. We focus only on the immediacy of the present crisis – the desire for life to continue and for pain to cease. We are focused and mindful of the present moment.  Decisions tend to be easier to make.  Paths are clearer.

Coming out the other end is a whole different kettle of fish. Trying to gather up the pieces of my old life and achieve some normality, keeping the black dog of depression at bay, dealing with boring old chronic pain and lymphedema.  This is a different kind of difficult.

Readers of the blog will know that I was made redundant very shortly before my cancer diagnosis two years ago. For me there has been no gentle, phased return to my place of work amongst supportive colleagues. (Not that it’s always like this; returners have their own challenges.) Instead I have had to sell myself in a competitive jobs market. And I have done it. I have sold myself.

Applying for jobs in 2017 has been a very different experience from doing the same in 1997. That’s the last time I went through a proper selection process.  In the olden days jobs were advertised in newspapers, you phoned up for an application form, if you were invited to interview your travelling expenses were reimbursed, you received proper instructions about public transport and parking, if you were unsuccessful at any stage you got a letter saying so. You were informed about timescales.

But now we are in May’s Britain and we jobseekers have to be put in our place. Nowadays it’s all done online and most companies don’t accept CVs so many tedious hours are spent typing the same stuff again and again into online forms, only to get to the final page where I am unable to submit my application because my ‘postcode is not recognised’ or some other irritating nonsense. And trying to contact these people to tell them that your postcode is legitimate is like wading through mud. Forget it.

The jobs are advertised as though they are precious gifts to be bestowed on very lucky, humble and grateful people. Do you want the ‘opportunity’ to be a ‘sandwich artist’, or to deliver food on your bicycle, to earn ‘up to’ £200 a week? (We all know what that ‘up to’ means, don’t we?) Would you be attracted to the ‘exciting night-time call-centre operative position’?

The standard of written English leaves a lot to be desired. Here are some of the gems:

This is not an exhausted list

The successful candidate should of completed a university education

Candidate’s must have they own car….

In one interview I had to sit on my inner English teacher and not correct the director’s persistent subject/verb errors: ‘Tell us about when you was working at The Institute of Financial Services.’

The main problem has been that I am not well enough yet to take on full-time work and part-time jobs can be pretty dire. Occasionally something semi-decent turns up; I recently got to second interview and in the final two for a job share in a management position but was pipped at the post by someone with twenty years’ experience ‘in recycling’ that was never mentioned as either necessary or desirable in the job and person specification, nor in the interviews. That’s the reason the director gave for my lack of success anyway. It may have been something totally different. It may have been the cancer.

Because that was always one of the first questions that I was asked at my interviews:

‘What have you been doing since October 2015?’

The law is fairly clear on this point: potential employers are not allowed to ask about health issues during interviews, nor am I obliged to tell them anything. If they offer me a job then they may ask and I must answer honestly but not until then.

But how was I supposed to answer? I could have said …

‘I’m not legally obliged to answer that question.’

Whilst true I hardly think that this would have got any interview off to a good start. So I decided to be open about the cancer. I’m not ashamed of being ill and I’m proud of my resolve to get back to normal so why wouldn’t I be honest? I resorted to the kind of language I absolutely LOATHE but in an interview situation clichés seemed appropriate. So I said…

‘I have been fighting and beating breast cancer. I have completed my treatment, feel better and ready to take on some part-time work.’

I would then smile and nod politely as the interviewers told me about their sister/cousin/aunt/friend/neighbour who had ‘beaten’ breast cancer and wasn’t dead yet. If they asked me how my own ‘journey’ had been I said that it had been ‘tough’ but I was happy to be moving on. I behaved well and tried to keep my weirdness and dark sense of humour shut tight in a box deep inside me. I thought about normal people and how they would react to these questions.

So now I have two jobs. I teach a two-hour class one morning a week and I work as a receptionist at a vets four long afternoons a week and alternate Saturday mornings.

Pulling together the dregs of my self-confidence and standing in front of a class for the first time in years was hard. But I did it. Go me! It’s a lovely group; we have fun and make progress. I’m looking forward to seeing them again on Tuesday.

The vets is an exercise in humility. I work very hard, I clean up poo and wee and blood, assuring the owners that it’s-fine-it-happens-all-the-time; I deal with lovely customers and not-so-nice-customers and very stressed and anxious customers; I make appointments, log microchips, register insurance, do surgery paperwork, anaesthesia consent forms, book people in, take money, set up care plans and monthly direct debits, record deliveries, deal with enquiries by phone, e-mail and in person; I dispense worm and flea stuff. I am told by my colleague that, as receptionists go, I’m a pretty poor specimen, that I am slow, ‘need to step it up a gear’, that ‘something ain’t working.’ It’s true that I get tired and sometimes my brain feels like it’s full of fluff. I forget stuff. I grit my teeth and bite my tongue (which is not easy). I tell myself that I am proud of myself for getting back into paid work. I consider myself an ambassador for job-seeking cancerettes and as such I do not complain about having to work late, about the constant pain in my upper body, about exhaustion. I am not used to being considered slow and stupid and it’s got to be good for my soul to have my pride knocked a bit.

So when the colleague tells me to stick my boobs out I laugh rather than run away crying. I tell her that I am better at being offensive than offended. Anyone who knows me will acknowledge the truth of this.  When I am told that I will probably cry because of work pressure I reply that this is not going to happen.

What I don’t say out loud (because I’m pretending to be a normal person) is that I have survived a stage three, grade three cancer. I have looked death in the face. Why should I be scared of anything?

The LORD is with me; I will not be afraid. What can mere mortals do to me?

Psalm 118 vs 6

Normal life is tough but I’ll keep at it. The alternative is worse.

Pollyanna Moment: Firstly, excellent big sister marking my cancerversary by taking me away to a spa for the weekend. Drinking wine and falling into the outdoor pool fully clothed feel sort of normal. I have some great bruises.

Secondly, during a spa treatment a therapist touched my hard, flat chest. For two years my chest has been a source of fear, anxiety, pain and embarrassment; it’s had surgeries, portacath implant, drains, bandages, paraffin dressings. I massage the scars vigorously three times a day to stop them sticking to my ribs. My troublesome chest continues to be poked and prodded every few months by my consultant oncologist and breast surgeon. Yet this kind young therapist gently massaged oil into it as if it was just a normal part of my body. It felt nice. This made me cry at the time and still makes me cry.

Thirdly, working at a vets is interesting and I am full of admiration for my colleagues and the care they show for the animals. And there are puppies with soft pink tummies to stroke. I love puppies.

Needlecount: What needles? No needles here.

 

 

 

Recovering!

keep-calm-and-put-the-kettle-onOur bodies are wonderful things. My body is amazing because it keeps on recovering. I feel better now than I have felt for nearly three years, confirming to me that this cancer was brewing long before it was discovered.

Long term readers of my blog (a discerning and dedicated group) will know that I was ill for more than a year before I found Terry the Tumour lurking at the top of my chest. I had a whole series of lurgies including a drug-resistant superbug, glandular fever, bronchitis, flu and chronic fatigue. My white blood count was in my boots meaning that my body’s natural defence system was seriously compromised. White blood cells play an important role in hoofing out atypical cells so it makes total sense to me that this period of impaired immunity allowed cancer to develop.

Getting the docs to admit this is another matter. It varies….possibly…..maybe. Docs tend to focus on particular issues and aren’t always great at seeing us as a complex system where everything is interrelated. I had so many blood tests in that first year but no one checked my tumour markers. These can indicate cancer somewhere in the body. Like mammograms, they are unreliable but, also like mammograms, they are better than nothing!

Speaking of mammograms, my pre-mastectomy mammogram showed nothing to give concern in my remaining breast. All normal and huge sighs of relief all round. When I returned to hospital in February after the mastectomy for my biopsy results I expected a nice chat with my lovely surgeon and a few jokes about the size of breast (2 kg) and how it would provide enough material for a whole cohort of medical students etc etc ha ha ha. I expected to be discharged from her clinic meaning that I only had the regular oncologist appointments to deal with. However, I was greeted at the door with the words:

“You were right to get rid of that breast. You made the right decision.”

This I was not expecting.

It turns out that the breast was brewing something nasty; it had widespread atypical ductal and lobular hyperplasia and lobular carcinoma in situ (LCIS). Not all hyperplasia leads to cancer but given my history it would almost definitely have gone that way…..and this would have been how the cancer started on the right. She said that she would be recommending a double mastectomy if I had any boobs left.

So my ‘healthy’ breast that had a clear mammogram was not healthy. Given a few years the whole cancer circus would have come to town again.

And the procedure that I had to push for….the surgery described by the hospital as ‘cosmetic’ and ‘for symmetry’ turned out to be prophylactic.

I always knew that my remaining breast would try to kill me.  I was right.  I didn’t want to be right but I was right.

I wasn’t expecting this news and had to fetch excellent big sister from the waiting room. Our different temperaments meant that I had been expecting an all-clear and she had been expecting bad news. Neither of us had considered a middle-ground.

Lovely surgeon was upbeat as always and readily admitted that I was right to have insisted on the second mastectomy. This result means extra monitoring and follow-up is required and she won’t discharge me from her clinic for the time being, even though I am also having three-monthly follow up appointments with the oncologist. All the usual stuff was reiterated – checking for lumps, bumps, new pain, rashes and skin changes, coughs etc etc. And the great thing is that I’ve got no breasts trying to kill me. Lucky flat-chested me!

But I was sitting there having kittens! And I spent the next few days having a really wobbly wobbly. Because….

  • How could my recovering wonderful body betray me by starting some new problem in this way?
  • After all that awful AWFUL devastating chemotherapy, how did my cells dare to start being atypical and dividing too quickly?
  • I only finished one year’s course of Herceptin injections in September. Herceptin is the wonder drug that has dramatically improved the prognosis for people like me with aggressive and invasive protein cancers. Herceptin is supposed to guard against recurrence. So WHY was I growing a new cancer in the other breast?
  • And if I was growing a new cancer in the left breast how do I know I’m not growing one somewhere else in my body? HOW DO I STOP THINKING ABOUT THIS?

Anyone who has had cancer will understand that we live with the fear of recurrence. Breast cancer is the gift that keeps on giving with high recurrence rates, sometimes decades after the primary cancer is dealt with. This is why breast cancer patients don’t go into remission; the best we get is No Evidence of Disease at this time. Some cancers can be dealt with tidily and people can trot off into their future, confident that that is it for them – been there, done that, got the t-shirt. ALL CANCERS ARE NOT THE SAME!

After a few days I got bored with this. I wrote down the questions to ask Prof when I see him this Wednesday at UHCW’s Arden Cancer Centre and got on with my life. It’s hard to be down when you feel well.

Getting on with my life means improving my fitness by doing my physio three times a day, swimming, walking, eating healthily, losing weight to help with the lymphedema and to ease residual joint pain. It means starting to think about returning to work. A few months ago I couldn’t imagine this but now I want to get out there and earn my own pennies again. I’m going to have to pace myself because I still need to rest or sleep in the afternoons, and I still have to deal with pain, stiffness and lymphedema in my right chest, shoulder and arm from the axillary clearance last March. (Second mastectomy has been very straightforward and two months on I have no pain on the left, just a little tightness.) I’m itching for some mental stimulation, some challenge beyond surviving and taking my pills at the right time.

I smile so much these days. I keep catching myself smiling.

Needle count: 180. Is this the first time that the count hasn’t gone up between blogs? Yay!

Polyanna Moment: I’m glad, glad, glad that Spring is here. I’m glad that Storm Doris only took the roof off the shed, not the house. I’m glad that I’m taking my gorgeous Things away next weekend.  I’m glad that I have been able to go out and do stuff and be sociable with my lovely friends and family.  I’m glad that I just celebrated my 51st birthday in a very normal, understated way. (Much better than my 50th in hospital!) I’m glad that I’m driving again. I’m glad that I found the memory stick with my CV on it in my knicker drawer.  God is good!

 

Iron Bra and Buddha Belly

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Iron Bra and Buddha Belly

There are some interesting disparities between feelings and reality at the moment.  For example, I have an itchy left nipple.  But I don’t have a left nipple, nor a left breast, nor anything on the right for that matter.  Of course I’m still full of codeine which makes me a bit bonkers.  (Note to self – hide my tablet after surgery so I can’t order any more inappropriate items like that indoor trampoline, or totally unnecessary silver charms for my charm bracelet, or that shirt in the wrong colour which I thanked my sister for but when I checked my browser history it transpired that it wasn’t from her…..)  I can still feel the weight and pull of my left breast but it’s not there.  I feel the grip of an iron bra tight around my chest and back, yet for the first time in thirty seven years I am not wearing a bra.  It’s all a bit weird.

The Buddha Belly is what we see if you take our breasts away.  Even very slim women are shocked to have an unimpeded view of their belly.  Those of us in the business talk about being eleven months pregnant.  I suck mine in but it still sits there.  It doesn’t really matter.  As one of my friends said recently, “well, your organs have to go somewhere, don’t they?”

My chest is a bit of a battle ground: bruises in blue, green and yellow, a dark red haematoma, a hole in my side from the drain and a wound which stretches from high in my left armpit across to the right.  My surgeon took the opportunity to do a bit of tidying up on the right so the new scar is long – about 37cm long, getting on for 55cm if you join in the old mastectomy scar.  Both ends rise into my armpits.  I am Frankenstein’s underwear model.

My chest is skin and bone and feels cold and vulnerable.  Being built for comfort not speed I’m not used to being able to feel or see my ribs. I am pear-shaped now.

It’s going to take some getting used to but I am much happier as a pear than as a one-boobed, lop-sided freak show who failed completely in the wearing of a suitable prosthesis.  Horrible, sweaty uncomfortable things that made my nerves jangle.  I am also free of the fear of my left-boob turning nasty and trying to kill me.

Pain – there’s plenty of that but it’s nothing like as bad as the axillary clearance last March.  This pain is more straightforward and my body tells me every three hours, day and night, that it needs painkillers.  Miss Paris Cetamol and Mr Cody Eine are my pals, together with Ike buprofen and La La lactulose to keep things moving. (Yeuchy stuff!)

I was a medical marvel for a while as my drain was draining more gunk each day for a fortnight rather than less.  My body doesn’t always do what it’s supposed to.  It doesn’t follow the rules.  Drains shouldn’t stay in too long due to the risk of infection; there is also the real risk that the bearer of the drain will go crazy one night and snip their own stitches and haul out the damned thing themself.  Drains do an important job but are universally hated.  Who wants to carry a plastic bag full of blood around day and night?  Who wants a hole in their side with a tube stuck in it?  Who wants daily visits from the nurses poking at it.  Ask me if it pinches…go on….ask me.  Does it pinch?  It bloody does!  And I only had one drain.  My friend who had reconstruction had to deal with six and two young children.  What a trooper.  Anyway, my surgeon decided that the drain could come out last Friday and I heaved a huge and painful sigh of relief.  Last April I developed a seroma that had to be siphoned off with big needles twice a week after the drain came out but so far, touch wood, thank God, there’s no sign of a build up of fluid.

It’s all so disgusting isn’t it?  I’m pretty disgusted with it all.  The smell of the hospital makes me want to run in the opposite direction, I even got fed up with the lovely, kind, daily district nurses.  I have really had enough of all of this. I want to shout at the docs and nurses “I used to be well and have a job and never go near any of you!”  I think this means that I am on the mend and not in danger of becoming institutionalised.  So it’s not necessarily a bad thing.

I’ve been so patient for so long and I just need to hold it together a while longer.  Now the drain has gone I can start my proper exercises and get moving a bit.  This morning I walked to the chemist round the corner.  Hurrah!  But now I feel like I’ve been run over by a bus and my arms ache so badly.  It has taken me hours to type this as I have to keep stopping and stretching.   I have to follow the physio programme and take it slowly as that will mean better and quicker healing in the long run.  Oh but it’s hard to be patient.  I want there to be an end in sight but I have to see the surgeon on 14th February for the results of the breast biopsy and the Prof on 29th March which is routine three month oncologist appointment but will also give results of the x rays of my hip.  There always seems to be something going on.

As for all those people out there grumbling about losing a week to flu ….come on people.  Really?

Polyanna Moment: There are so many of these.  This operation marks the beginning of the end of all of this nonsense and I’m glad, glad, glad that it’s done.  It was devastating when the December operation was cancelled at the last minute (And I mean ‘last minute’.  I’d been there all day, hungry, thirsty, anxious and it wasn’t until early evening that I was told it wouldn’t happen).  I’m also glad and grateful for the friends and relations who are STILL visiting and doing shopping and cooking for my freezer and bringing presents and cards and giving me lifts to boring horrible hospital appointments and walking Bonnie, and the long distance people who are sending flowers and cards and texts.   Thank you!  Things One and Two also need a special mention as they continue to be kind and resilient.  Thing Two kept me fed and watered for the first ten days or so, put the fire on in the morning, checked on me, stayed in.  Being alone in the house with someone who’s just had an operation requires courage and kindness.  Thing One came home for two weekends to help and, with my sister, got me up and dressed in the hospital. This was no mean feat as I was completely out of it!  She’s constantly in touch.  Amazing daughters.

Needle Count:  Oh the fun we had in hospital trying to find a viable vein for the anaesthetic.  How we laughed.  Including the drain we are now on 180 needles since diagnosis in August 2015.