Post surgery

Keep up and you will be kept up…

MHB June Bird_Hope
“Hope is the thing with feathers that perches in the soul and sings the tune without words and never stops at all.”                                                                 Emily Dickinson

The last few weeks have been a huge period of introspection.  Nobody can imagine, when they are diagnosed with breast cancer, how they will cope but you hope you will find strength to deal with your new unravelling journey. As I reflect on what has happened over the last 12 months I think, whilst there are many dark days, you either venture into the trough of despond or you try to find the positive in each and every situation and cling onto hope, even when your fingernails are gripping on for dear life and you feel you may slip off the cliff edge at any moment; for me clinging onto hope is always the best option, for without hope, we have nothing at all.

In some ways the hysterectomy has gone quite well and in others, I seem to have developed a myriad of other problems which I had not anticipated, some small, some much more troublesome. I was advised the stitches would take two weeks to come out and eight weeks later they finally dissolved, I deduced from this I clearly had rhino skin. My husband kept saying, “just pull them out” but even the slightest tug felt like it was pulling internal organs through my epidermis, alien style.  The incision site near my bellybutton became somewhat infected and still remains sore. It is of course human nature to fiddle with something that has been sore for a period of time and so naturally I keep prodding it to see if it is feeling any better, it isn’t. In a similar vein, since I had my reconstruction surgery, I have little to no feeling from my bellybutton down to my bikini line. This means when I place my hand on my belly I don’t know where my bellybutton is so I like to play a game a little bit like ‘pin the tail on the donkey’, except it’s called try and find your bellybutton. Because I have absolutely no sensation of course I always miss and my finger points somewhere to the left, right or upper middle of my navel which I still find amusing!

On a more serious note, since the hysterectomy, I have joint pain which is quite debilitating.  I am currently working with a physiotherapist to try and strengthen some muscle groups and in the meantime, waiting for a CT scan.  My bladder has become hyper-sensitive – no one told me about this and I certainly didn’t sign up for it!! As a young woman I am definitely not ready for Tena Lady so instead, I am totally committed to Kegel exercises but if I do them with anymore regularity soon I will be able to hold a pencil up my chufty but in the meantime, they are not helping the bladder issue whatsoever!

My thoracic spine has become quite flattened since the mastectomy in spite of yoga so I am working hard to try and improve the range of movement in the area which will hopefully increase flexibility to my right arm.

When I embark on any exercise, I realise half way through, I have limited stretch in my abdomen. I don’t know whether this is because of the hysterectomy or whether it is due to the DIEP reconstruction. It feels as though my skin is so taught it is going to tear open. It doesn’t stop me but it is a constant reminder and I feel I need to be careful. Put it this way, Vinyasa classes are out of the question for now.  I have absolutely no idea whether I will gain any flexibility in my skin; if it will stretch in due course or if it will always feel taught.  My bionic boob is extremely sensitive and some days even my clothing touching it is enough to cause pain and discomfort.  If I find myself in a situation where I need to run (which I try hard to avoid), it feels as though my boob is going to detach like a tennis ball being catapulted at 160mph by Venus Williams’s serve only then to forcefully land back onto my body with an almighty jolt as the force of gravity makes me take two steps backwards.

On a day-to-day basis I feel as though I have been shot with a tranquilliser dart big enough to stun a horse. Fatigue is simply an understatement and on some days by 10am my body is drained as I walk around zombified. I refuse to go to sleep early in the day, clinging on for as long as possible and usually find myself catching a ‘nana nap’ just before the kids come home or before supper hoping no one has noticed.

The fatigue is generally not helped by the sleep deprivation during the night and the constant tossing and turning of the duvet, will I be hot or will I be cold – who knows! I have learned to surrender to it rather than fight it. I think if you resist the sleep it becomes stressful and a self fulfilling prophecy.  I have learnt over my weeks of increasing insomnia to surrender to the feelings and instead of willing myself to sleep, accepting rest will suffice in-between the long periods of awakeness. When my mind starts to wander as it does sometimes, I meditate to bring it back and give me a fighting chance of peacefulness. Of course sometimes it has a mind of it’s own and is totally uncontrollable and on those occasions I fall out of favour with it and give it a serious talking to.  Everything you read suggests you should come downstairs and put the kettle on but I fear I’d never get back up the stairs because I know I’d find something to do on the ‘lets tidy up’ front.

Since the hysterectomy, I have become incredibly emotional. I can be having a perfectly normal conversation about a typical part of my day and for no apparent reason burst into tears. This is so unlike me. I have needed lots of hugs which is untypical and there has been an immediacy to needing support with my emotions. My husband has been truly amazing and I would have been lost without him.  When I was contemplating the surgery I had not considered the emotional implications I would experience. In many ways I feel like the teenager who has started her periods – full of heightened emotion and struggling to express them.

It has now been 12 months since my initial diagnosis and over the last few weeks I have spent much time thinking about what has happened over this period. I don’t know whether it has been my heightened emotional state or perhaps time to finally reflect on life’s events, but I have found it difficult to come to terms with everything that has happened from the diagnosis; the surgery being cancelled; the further delay to the surgery; dad being so poorly; the unexpected breast cancer diagnosis (as I was initially diagnosed with DCIS); radiotherapy; commuting to 2 hospitals in two cities; my husband changing job; the impact the whole situation had on our family; the guilt you feel and helplessness when you are in this situation and then of course a hysterectomy. I haven’t been wallowing in self pity but more coming to terms with the enormity of what has happened for the first time. I think I have been running on auto pilot and now, my body and mind are adjusting to their new normal, mentally and physically.

I was delighted when I received a letter to say my mammogram was normal though I twitched a little as there is no testing of the bionic boob – (it isn’t breast tissue so traditional breast screening will not suffice). I really do need to, ‘let it go’ as with every new lump and bump which arises, and there are many, I wonder, ‘what if’. I am coming to terms with uncertainty.  I know it will pass as hopefully, there will be more time between the diagnosis and today and I will get used to emerging lumps and bumps in a reconstructed bionic boob which has been zapped with radiation.  At an appointment with the plastic surgeon the last week, she actually said ‘it’s so taught and so full, it looks like you have an implant’ and it does – it’s like a cantaloupe melon, shame its sister is more like an over ripe avocado…

When I saw the plastic surgeon she was clearly very pleased with her work admiring me like an exhibition at the Getty Museum, as I stood there, one nipple on, one nipple off.  I had gone open-minded – wondering whether more surgery was really what I wanted or needed right now – and yet as soon as she opened her mouth and started talking about how much better the overall look would be once she had finished sculpting, taking a little bit of fat from here there and everywhere to fat fill my left boob and shave a little off the bionic boob to minimise its overall plumpness – I was sold. Her defining line, “having a breast with no nipple it’s like having a face with no nose “. I’m not quite sure I agree to that extent but I could see where she was coming from and given my dressing table is covered with glue from the prosthetic nipple I attach on a daily basis not to mention the odd bit of cotton wool that gets stuck to both dressing table, fingers and nipple as I am doing my make up, it will be a blessing to have a more permanent solution.

A couple of weeks ago I was getting ready, I had put glue on my nipple and left it to dry for the required five minutes before applying it to my skin only to forget about it and discover it attached to my ponytail! Can you imagine going to Tesco with a nipple in your hair – OMG!  As the plastic surgeon was summing up, I was increasingly buoyed up at the prospect of nipple reconstruction surgery having gone in fairly disengaged only then to be told right at the end there is a likely two year waiting list. I got in the car, phoned my husband and cried all the way home at the prospect of this chapter not ending for another two years.

In Kundalini yoga, Yogi Bhajan says “keep up and you will be kept up”, this mantra can be applied in many ways, to remind us that the road to mastery takes perseverance; to encourage us to commit to yoga which in turn helps us to see through life’s challenges. The message I take from it now… it’s about the thoughts we think and the energy those thoughts help to create, good or bad, positive or negative. We have a choice.  It is easy to become all consumed by negative emotions, ill health, fear and uncertainty but it we keep up and try to reorientate those thoughts, find the time to be grateful, seek compassion in all we do, we will be kept up.

Thank you for taking the time to drop by…

Much love, Toots xx

Cancer related drugs, Post surgery, Radiotherapy

An oncologist, radiologist and a gynaecologist all in three days…does life get anymore exciting!

MHB Stagg
Photo courtesy of Ali

“Family is the most important thing in the world”

Princess Diana 

It has been a few weeks since I put fingers to keyboard – I shall explain.  My wonderful dad was admitted to hospital nearly seven weeks ago with heart failure.  Five weeks ago, we held so much hope when we were told he was being transferred to a specialist heart centre, one of the best in the county, and would undergo immediate surgery.  It was enough to send the whole family into disarray.  Dad was and continues to be his usual calm, steadfast self holding us all together with his joy and laughter.

During the initial few days in the new hospital, we were told many investigations were required.  A few days turned in to a week and then two and then three.  Dad became increasingly poorly.  Then came the devastating blow that surgery was no longer an option.  My heart shattered into a million pieces.  

And so, here we are, trying to be strong, not knowing what each day will bring but facing each day with a smile and a box of tissues.  Every day dad tells us ‘I love you from the bottom of my soul’ and I know how blessed we all are to have each other.  Even in his poorly state, he has been knitting blankets for Syrian refugees; being Agony Uncle to the staff and patients on the ward; always putting the needs of others before this own.  

We pray to God for a miracle, to lay his hands on dad and cure him, for he has been so selfless in his life and helped so many people with out knowing the joy and light he brings – we all still need him!

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The Oncologist

Amidst visiting dad in hospital, I’ve been cracking on with my own cancer diagnosis and at the beginning of October, my appointment with the oncologist fell due.  The last few weeks had been helpful in terms of my recovery but I knew seeing the oncologist would mark a new phase of my journey setting out adjuvant therapy and the next ten years of my life.

My consultation was seamless.  The consultant was very quietly spoken, we had to really tune in to hear what he was saying.  I was very keen to understand risk associated with recurrence and he was able to reassure me considerably.  I had hoped, given I need to have a hysterectomy, to avoid Tamoxifen and other endocrine therapy but his advice was clear, it is still necessary, for ten years.  I struggled to get my head around this.  My radiotherapy would begin in three weeks or so and I could expect a phone call within ten days for my initial mark up.

I left hospital, Tamoxifen in hand, wondering how it would impact on my life, knowing I have no other reasonable choice.  I can’t lie, for the first couple of weeks taking the Tamoxifen I was like a spoiled child saying things like, ‘only 120 more packs to go’ or ‘only 3645 more tablets to take’.  I’m over myself now!

The Radiologist

As we drove home, I got a phone call from the Cancer Centre inviting me to go for a mark up the following day with a view to starting my treatment the following week, which was much sooner than I had expected.  Obviously I said yes.

I went the following day and was grateful Clare was able to come with me at such short notice.  I was given a gown which would become mine for the next four weeks, cluttering the kitchen table.  My initial response to the radiographer was akin to Goldie Hawn in Private Benjamin, ‘Is green the only colour these come in?’  It was huge and drowned my now size 8 frame – still, we giggled and went into the radiotherapy room, camera poised so I could take some photos for my blog.

I am not sure the radiographer had been asked too many times if taking photos were allowed and of course when they tentatively said yes, Clare immediately set to, moving chairs, climbing on patient steps and the like, whilst the radiographers positioned me, in an attempt to get the best shot.  This is why I am smiling in each of the pictures because she was making me laugh!

I acquired my first tattoo – actually three of them.  You can see in the pictures below a tiny black dot which I have circled in red; this is in the centre of my chest, between my boobs.  I have two others on each side which assist the radiographers when lining up the radiotherapy machine each day.

My radiotherapy took place for 15 days over four weeks excluding weekends.  Some days, I would be seen on time and others there would be quite a bit of waiting around. Immediately after my first treatment, I noticed a difference in the pliability of flesh and after 2-3 sessions, the place where my new nipple would be had risen and so was out of line with my existing nipple.  When chatting with other patients, this was definitely a breast reconstruction issue so if you have had breast surgery without reconstruction, this should not be a problem.

My breast care nurse advised me to go home after each session, strip off and sit in front of a fan and so I did, even if it was a few hours after my treatment (as the radiotherapy continues working and is cumulative in its effect).  The fan definitely cooled the area down but my breast remained hot even with the fan on and the rest of my body in a state of shiver.

I religiously applied Aveeno, twice per day and aromatherapy oils (as mentioned  in my previous blog).  I have had some side effects, the odd blister; redness; heat; painful ribs due to inflammation from the radiotherapy; a tighter, firmer boob; I have also felt very tired on some days but factor in I have spent six hours a day most days travelling between hospitals in two different cities having radiotherapy and seeing dad and then coming home and trying to be mum to the kids and a wife if I have the energy!  I’m not complaining, it’s just the way things are right now and I’d travel to the ends of the earth to see dad every day when he needs me so much, regardless of what’s going on.

When I finished radiotherapy, the radiographer said things (as in the side effects) are likely to get worse over the next 2-3 weeks.  I honestly took it with a pinch of salt and by day three post rads, my skin felt like I had chronic sunburn with more blisters emerging.  This too will pass and very soon it will be behind me.  Overall, the radiotherapy has been far less invasive and with less side effects than I thought.

There has been an unexpected pleasure of radiotherapy and one I will treasure.  Every day you go to the Cancer Centre and it is a drain on many levels, both emotionally and physically.  When you arrive, cancer is all around you, in every nook and cranny.  The Centre totally enlivens you, it is an opportunity to bring people together, everyone, with their own story to tell, the staff are amazing, particularly Hayley who guided me when I had a bad day.

Nikki, Mike, Flo, Raj, John, hoping to get better, all hoping we will all get better.  Everyday we meet and exchange pleasantries but by the end of our treatment, saying goodbye to these people is difficult, I feel like they have been part of my journey and I feel sad having to say farewell.

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The Gynaecologist

So amidst the furore of oncologists and radiologists, I went to see my gynaecologist; a beautiful lady who reminded me of my grandma with the Indian lilt to her accent.  The purpose of my appointment was to understand the benefits of a hysterectomy for women in my position or whether an oophrectomy would be a safe and suitable alternative by mitigating my breast and ovarian cancer risk.

We talked at length about the options and particularly about my main concern – a prolapse – I don’t want to be faced with a leaky bladder!  She assured me that so long as I came out of theatre clenching, I’d fine.  She said her advice to all women is to perform pelvic floor exercises every time you put the kettle on and to clench until the kettle boils, problem is, we’ve got a bloody big kettle, it takes an age to boil!!

What we came to was whilst the oophretomy will protect my breast and ovarian cancer risk, if the uterus is left intact, there is a heightened risk of uterine cancer for women who take Tamoxifen.  Given my prescription is extensive (now 3605 days and counting), do I really want to take the risk given they are in the area and can whip it out.  My main concern is my abdominal scar is healing nicely and I want to avoid at all costs an abdominal hysterectomy but we hope the procedure will be either laparoscopically or vaginally and all being well, it will be carried out in January.

Next Up

There are lots of appointments coming up, the breast care nurse to discuss my future management and care; the oncologist to assess how my treatment is going and how I am responding to Tamoxifen (I could write a whole blog about that one!); the Cancer Centre to manage my discharge from radiotherapy; the very long awaited prosthetic nipple appointment which is on Wednesday 7th – I will tweet about it!; the gastroenterologist to check out my abdomen, and so it goes on.  I wonder sometimes what did I do before I had cancer.

I found out on Friday one of my very good friends has been diagnosed with breast cancer too so I will do everything I can to support her – you are not alone; there will be good days and bad days and we will face them all equally.  I count my blessings every day, the fact I have access to such wonderful services; the amazing friends who have selflessly given up their time to take me to appointments; insisting on driving when I could have easily driven; taking time off work; going to hospital when hospital is their phobia; just always being there.  Not forgetting family, who are the most important thing in the world and without them, for me, there would be nothing.  The last few weeks have been particularly difficult for us all and without the support of dad’s brother’s and their wives we would have been lost so thank you all.

Hopefully, it won’t be quite so long until I write again.

Much love,

Tootsie xx