Me!

Me!
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I am 45 years old, Married to Sean for nearly 20 years and have 3 lovely children Hope is 16, Jack is 12 and Joe is 6.

Saturday, 30 June 2018

On this day....

(Written on June 29th 2018)

I can’t quite believe the difference a year makes - that old cliché. I know I keep saying it to people; it does however continue to remind me of how lucky I am to be so WELL. Believe me it’s take a lot of hard work to get to this point and to be honest, even greater effort mentally at times, I refer to it as ‘mind over matter’. And when I say ‘well’ I am...but it doesn’t mean that I don’t struggle with my residual limb, my remaining leg, my back, under active thyroid etc Some days it takes monumental effort to drag myself out of bed and put on a couple of body parts. I may even be just having a ‘can’t be arsed day’ that ANYONE can have. But I know that once I do get going I will feel better for it. Whether it’s teaching at the University, mentoring a student who is training to be a teacher, Signing in a nursery, walking the dog or swimming in the Lido.

On this day in 2017 I faced my 2nd surgery in a fortnight. To repair what had gone wrong after the mastectomy and reconstruction. I was unable to attend the funeral of my friend’s son and was still very very unwell still. Today a nursery manager who I’ve been teaching on a Signing Training Course told me her Mum’s been diagnosed with breast cancer and is currently undergoing treatment. She asked me advice and to explain more about what was happening. We looked at my photos (to show her you CAN come back from this).



I also know how life could be so very different. I saw a post from a school friend who had breast cancer several years ago and was successfully treated. She had written about how amazing she felt a year ago....then was diagnosed with a recurrence and is currently being treated. I hope this will show her a year from today will be very different again.

A dear friend who was also diagnosed and treated around about the same time (with a different type of cancer) has heartbreakingly now been referred to the palliative care team. 

A journalist who I have followed; as she was diagnosed and treated at a similar time to me, has been diagnosed with Secondary Breast Cancer i.e. it has spread to other parts of her body and she won’t survive to see her son grow up.

Life is precious and fragile and it’s course can literally be changed in a heartbeat. It’s a cliché telling you live life to the full and appreciate it, but I truly mean it. Sometimes this will involve catching yourself and reminding yourself of this. I have to; when I get caught up in the minutiae of day-to-day life. 

I have been given this chance to make the most of whatever time I have left in this life and to make a difference. It doesn’t mean I don’t get angry or frustrated about things that are trivial in the grand scheme of things but as long as I can pull myself and appreciate the precious moments, that’s what matters. The sunset or rainbow that stops me in my tracks. Standing to watch and marvel as a deer crosses my path whilst walking the dog. To have the pleasure of leading an assembly for lots of young people who are interested and inquisitive. A little Spanish girl who interacts and joins in signing more than she has ever done in anything else at nursery.

I have my faults (my family could probably tell you lots of them!) I’m untidy and often late, as I’m trying to cram too many things into too short a space of time. What I do know though is that I definitely won’t need to put ‘I wish I’d spent more time enjoying life’ on my gravestone. I MAY need ‘I should have spent more time tidying up/washing/ironing/cleaning’ but we’ll cross that bridge when we come to it.

I’m sharing these photos with you to illustrate just how far you can come in a year. To those who are facing seemingly insurmountable problems, to not give up. It is possible for life to be good again; to manage ongoing difficulties with help of physios, medics, counsellors.....whoever you need. It may not be in a year or even two...but don’t give up hope or stop reminding yourself how resilient we can all be, even when it’s the last thing you believe.

I’m not ashamed of them (sorry if you’re squeamish though!) They ‘cheese grated’ the skin off my only thigh and to be honest it was one of the most painful things I have EVER been through; bleed profusely for weeks, took months to heal and made it really hard to walk.  The wounds healed eventually, scars are still there but will fade and it just makes me think that the body’s capacity to heal is phenomenal.

        1 week post graft                  2 weeks post graft            When stomach wound 
                                                                                                      seroma burst





Monday, 5 March 2018

The English Channel

You will probably re-read this post, as no doubt you will think it’s written either by an entirely different person from the last one or I have a split personality!

Armed with the knowledge that physical activity may help to me keep the cancer at bay, as well as being the sort of person who needs to something to work towards to stay motivated. I was presented with a once-in-a-lifetime opportunity that I couldn’t pass up.

In the Autumn of 2016, 20 years after my amputation,  I swam the equivalent of The English Channel in the pool to raise money for Aspire, the Spinal Injury Charity. I undertook this challenge to help get fit again after an ankle ligament reconstruction and the 5 months in a cast that followed. I was filmed by Calendar TV and one of the staff at Aspire saw the footage and approached me to be part of a Relay Team for Summer 2018. There would be an assessment day in November 2017. Great I thought then 2 weeks later our world caved in and I was diagnosed with stage III aggressive breast cancer.

As you know I then went to hell and back during the cancer treatment and couldn’t even get into a pool, mainly due to the various central lines I had poking out of my body during that time. So when Autumn 2017 came around I hadn’t even finished my radiotherapy and I was invited along to the Assessment day. I explained what had happened in the intervening period but was still encouraged to attend. They told me I didn’t have to do the timed swim but not only did I end up going but I did the swim (but didn’t want to know the time as I was, for good reason, totally unfit!).

I was so pleased a couple of weeks later when I was invited to join a team. Five complete strangers at the time, who, hopefully between us, will complete the 22 miles from Dover to Calais in August 2018. We have now met, and swum (in exceedingly cold water!) and been named ‘The Hammerhead Sharks’.



Many (should read, most) of you will think I’m crazy and yes maybe I am. Not only do I have problems with both legs but I’m going to be less than a year from finishing breast cancer treatment. But I’ll never know what I can achieve unless I try. I am of course going to badger you all for sponsorship! On which note please follow this link to learn more and do exactly that 😊 

It really is for a brilliant cause, to help those with spinal injuries get back to work, independent living or sport. Their strap line really caught my attention ‘From injury to independence’. I could really relate to it as I’ve had to battle my way back from a similar place on more than one occasion. Also the importance psychologically of doing so for the disabled person.



So training is well underway and roll on summer, at least the water will be a bit warmer!! I will continue to blog through the challenge so keep your eyes peeled. In fact read all about it in my dedicated blog www.mychannelchallenge.blogspot.com



Sunday, 4 March 2018

Living with the fear

Hilarious, I notice my last post was entitled ‘It’s been a while...’ well the same again really! So much to share and write about I almost don’t know where to start. This was me 12 months ago, it feels like yesterday.



I’ll start with the title of this post. Finishing active cancer treatment is strange. It’s not something that elicits euphoria, celebration or any such feelings like that. We go back to the things I’ve blogged about before; people don’t really know what to say or how to react. Instead of keeping stum they end up saying something that winds you up. Then you feel guilty for feeling angry or upset because you know they mean well and are just trying to be positive. The funny thing is you don’t feel so positive. Relieved, yes, not to have to go to hospital daily, turning up not knowing whether you’ll be in and out or sitting there for three hours. But certainly not ‘really happy’ or ‘ecstatic’ as some asked me.

You actually felt quite abandoned. I never knew what the next steps were i.e. how often I had to go back, what sort of follow-up I’d be offered, what to do if I was worried (believe me every pain, twinge, ache or unusual mark can send you into a tail spin) or what my future would look like. People started to ask so I had to ask.

Then you also feel guilty for NOT feeling ecstatic; you actually feel frightened and vulnerable and paranoid. Surely the point is you are ALIVE and not dead? Should you not be thankful and celebrating? You’ve been literally chopped up, pumped full of poison and zapped by radioactive rays. All of which have hopefully obliterated the tumour cells and any rogue stray cells but have also been catastrophic physically. Many of the bodily systems that worked OK have stopped functioning. No thyroid function, depleted Vitamin D, chemo induced menopause; to mention but a few. The body is in shock and will be for some time to come but psychologically you’re also exhausted and
I honestly felt like they had said ‘Ring the bell and now piss off’.




Looking at it logically, the sheer number of people receiving chemotherapy on a daily basis just at the day ward at St James’ Hospital numbered 70+. They don’t have time with overworked staff and under resourced services to give a toss about you once you’re ‘done’. Sadly though this is the time when you are most in need of that support and reassurance. Even though the daily grind of all the visits, appointments, waiting and uncertainty is exhausting, it’s like a comfort blanket as you have people to ask and question and rely on to support you. Those around you too then assume you’re OK and ‘better’ especially as physically your appearance starts to improve and you may even have hair!

Everything seems to have to be driven by the patient, but you are no longer a patient but someone who has been through cancer treatment. Does that mean you’re ‘cured’ or ‘in remission’? A question others ask and you ask yourself. The simple answer is ‘I don’t know’; I can only presume so. But those things are never said and any support you then need, counselling for example, is available but all has to be driven by you.

'You got some leaflets'.... I was told....When? During those early days and weeks when we were shell-shocked and like a pair of rabbits in headlights? Sean lying awake at night, wondering how he'll manage. Having read of how young children who have lost parents at a young age are irrevocably affected. Willing me to live until Joe is a teenager at least and the others are in their 20s so they can cope.

Thankfully I got to know a friend of a friend who works in the Cancer Support Services at the hospital, who I am now proud to also call a friend. Someone who has been an absolute rock for me and led me in the directions of the services I need. But what about those who don’t have this, or who aren’t eloquent or able to articulate what they need, what happens to them? And by the way feel free to replace the aforementioned attributes with talkative, stroppy and bloody minded!!

I attended a ‘Live with Cancer’ Day in November at Harrogate Convention Centre, about a month after finishing treatment which was very nerve wracking as I went alone. It opened many new doors for me and was very informative as to how we can help reduce the chances of recurrence. I got back into Pilates and was introduced to the wonderful LEAR fitness in Harrogate and their PINC classes...at the time for other women who've been treated for breast cancer (now more classes available for people recovering from other cancers too).

I listened to numerous people speak. Two of the whom really struck a chord with me but for very different reasons. The first was a guy called Andrew Graystone who has recurrence of prostate cancer and the second the Lead Cancer Nurse for Leeds Teaching Hospitals Trust. The Recovery Package at Leeds, as they're calling it sounds amazing and all encompassing but only exists in principle sadly right now, I am hoping this will eventually change. Hopefully I'll never know as I'm not planning more treatment anytime soon! Sitting there listening to the presentation they could be talking about any other hospital other than the one I had just been treated at. You can view the slides here.

The treatment and staff who administer the treatment are amazing and so supportive giving you as much time as you need and they're fast, so fast; no waiting hardly for scans, results, pre-ops or surgery. It's the after care, or lack of that's lacking. How are you supposed know whether a pain is worrying, who do you ask and how long do you wait until it really could be a problem? These are the things you need guidance on. And yes I have fed back about small realistic improvements they can make that don't cost the earth but would make a huge difference to patients. The main issue, as with most big organisations, is communication or lack of. Mixed messages and sometimes too many 'fingers in the pie'.

I could really relate to Andrew, here are some quotes from his presentation that I could REALLY relate to:

"I didn't feel like a victim and I didn't choose to be a hero"

"(cancer) is like an unwelcome visitor that (rudely or abruptly) interrupts every conversation"

"I don't want to fight cancer I want to live well with it and live better without it"

"I'm not defined by my cancer but I just want to learn to live with it and eventually kiss my cancer goodbye."

You can listen to one of him speak here, the first time he had cancer

Oh yes the F word, not the one you think I might add, but FIGHT. No other illness is ever referred to in this way other than cancer.  People don't say when you've had a heart attack or pneumonia 'Oh you must keep fighting', so why? I think the reason it annoys me the most is that if someone dies of cancer despite, whatever the circumstances; whether they've tried everything possible or just decided not to put themselves through the gruelling treatment and feel so ill from that, only to gain a bit more time. That the implication is that they didn't try or 'fight' hard enough and therefore failed, it's nothing to do with that.

Another very interesting area of research I was introduced to at Harrogate was the role regular physical activity can play in the prevention of cancer. I am the type of person who is proactive and knowing that my type of cancer has about a 35% chance of recurring in the first 3 years I wanted to do everything I can to try and prevent this.

Thankfully as my specialist area is physical education I didn't need much convincing to exercise regularly! Despite my knowledge I was absolutely amazed to find out that regular physical activity (now don't panic, I'm only talking about National Guidelines - 150 minutes of moderate physical activity per week, even in 10 minute bouts) can help reduce the risk of not only recurrence by 40-60% (yes you read that correctly!) but actually getting cancer in the first place, especially breast and colon cancer. Unbelievable eh? And the evidence is conclusive. Read more about it here. And if you want to read some of the research itself click here

Not surprisingly other factors include all the other aspects that we all should adopt but struggle to stick to! Healthy diet and very little alcohol, in actual fact NO alcohol. Again I don't know why I was at all surprised to hear this but I listened to a presentation informing us all bottles of alcohol will soon carry the warning label 'Alcohol causes cancer'.

So despite adopting ALL of these things, which I have, as well as going on a clinical trial using regular aspirin to try to help reduce the risk of recurrence there is always an underlying anxiety. Will the cancer come back? How will I know? Already since finishing active treatment last Autumn I have had 3 'scares'. The first being the week I finished radiotherapy and finding some lumps in the reconstruction area. Being told after Ultrasound that I probably needed a biopsy. You're suddenly plunged back into that world of head spinning questions and what ifs? Thankfully it turned out to be necrosis from the reconstruction.

Then before Christmas my blood test results (liver function, sex hormones, thyroid, blood sugar etc) were all so awry I had an emergency appointment with oncology the following day and the GP had me in a total panic suggesting I needed a head CT as something may be going on 'higher up' I was non-plussed, then to be told it was a brain scan. Only a month ago my persistently high liver function tests had them sending me for a bone scan, when I questioned what that had to do with bones I was told it was an indication of disease i.e. cancer in the bones. Another nerve wracking wait for the scan and the results; it was clear. Thankfully. However much you tell yourself it's great they're so on the ball and I'm high on the radar. Or another of your consultants says 'given your history no one wants to be the one to make a mistake'. It's hard, really hard to travel this roller coaster ride, thinking at any time you may be plunged right back into that world of uncertainty and agony.

How do you live with 'The Fear' as I call it? I don't know. I keep asking myself and other people how? No one has an answer, even though they may have been or are going through it themselves. I guess it may get easier with time, I'm not sure and will have to see.

I'm not worried for myself if it does come back, I know I can survive the worst treatment, butchering and the most terrible agony anyone could ever go through and rebuild my life afterwards. I'm scared for my family, especially my husband and children. Just when they are beginning to come out the other side of this dreadful nightmare. I dream about it coming back and having to hide it from them.

Who knows what the future holds? It's probably a good idea that we don't know. If nothing else my experience is a reminder to enjoy the moment and live for today.






Thursday, 19 October 2017

It's been a while....

.....it sure has! Forgive me father for I have not updated my blog in well....a long time! I feel like I'm in the confessional. 

There were a number of reasons for continuing with this blog whilst being treated for breast cancer. It obviously wasn't the reason I started it; that was after the fallout of being wrongly diagnosed and treated for bone cancer all those years ago.  

I find writing cathartic and it helps keep a larger number of people informed as to treatment, progress and developments. Well, to be honest these last 4 months I haven't felt much like writing or doing much else. Literally putting one foot in front of the other (sometimes not even being able to do that) has been tough, keeping the house running and the three stooges getting to where they need  be has even been hard, really hard. I guess this is again #therealityofbreastcancer or living with any type of cancer diagnosis and subsequent treatment. 

I haven't done this without help, oh no, that unwavering support from the masses has literally at times carried me and our family. Everything you can possibly imagine; from meals being delivered, children being ferried around, hugs and kind words from dear friends in the playground, when on occasion I have crumbled and literally sobbed with physical and mental exhaustion. Friends and family accompanying me to some of the many appointments, sometimes literally dropping everything on the spot. Cards, gifts and flowers through our door to the lovely messages of support by text, email and Facebook from folk all over the world. Often when I just needed that extra encouragement to 'keep on keeping on'. A new catch phrase for me, along with my old adage 'nothing is straight forward'. Which incidentally has also continued to ring true!! 



People say you find out who your friends are at times like this and it's absolutely true. Some who I thought would have been in touch or to see me have not. Others, sometimes those who were previously acquaintances or people I've met through social media over the years have been amazing. They also say cancer brings out the best and worst in people; again that's true. The pressure and expectation people have of you is very hard to live up to at times. Or maybe it's the perceived expectation I think they have? Or even I have of them? The subject of another post I think!!!

In a nutshell these last 4 months have far from 'flown by'. Much of the time I have felt I've been wading through setting concrete! Not easy at the best of times never mind with a false leg that's not even fitting properly! 

I knew waking up from over 8 hours of major surgery was going to hurt but boy did it hurt! Even when in CCU (Critical Care Unit)  for the first 24hrs pumped full of drugs I knew it had been a 'biggie'.

I had a procedure called DIEP Flap reconstruction at the same time as mastectomy http://www.breastcancer.org/treatment/surgery/reconstruction/types/autologous/diep. My surgeon, Augustine Akali or The Boss as my BCB (Breast Cancer Buddy) Carolyn and I call him http://www.restoresurgery.com/downloads/Personal-Profile-Augustine-Akali.pdf, is an expert oncoplastic breast micro surgeon. If you live in Hull or North Yorkshire you can go to Castle Hill Hospital in Hull https://www.nhs.uk/Services/hospitals/Overview/DefaultView.aspx?id=RWA16 for this procedure on the NHS. It is not offered currently at Leeds, Bradford or Harrogate as they don't have the specialist microsurgeons to do it (sadly one Doctor trained by The Boss left St James' to head north just before my surgery was due). Thankfully I still pay for private cover with AXA PPP Healthcare and was able to use that insurance to go to Spire Hospital in Hull https://www.spirehealthcare.com/spire-hull-and-east-riding-hospital/?gclid=CjwKCAjwmqHPBRBQEiwAOvbR8zRKY8I7Llc06gDbenI_H8MWLhNjqZk6ziS-NNGwwFI7NbkI0m-P6RoCol8QAvD_BwE&gclsrc=aw.ds

The reason I was so keen to have this specific type of reconstruction was that they don't take any muscle from elsewhere to reconstruct the breast. With my other difficulties I need as much as I can get! Some women opt for the Back Flap where they bring some of the Latisimus Dorsi muscle under the arm and recreate the breast http://www.breastcancer.org/treatment/surgery/reconstruction/types/autologous/lat-dorsi As a long term user of crutches and a wheelchair and doing a lot of swimming this was not an option for me. At Leeds the Head Plastic Surgeon does a procedure called The TRAM Flap using some of the rectus abdominus (tummy) muscle to reconstruct http://www.breastreconstruction.org/TypesOfReconstruction/tram_flap.html I use my stomach muscles more than most, for example to help sit up when I'm not wearing a prosthesis. Again not a good surgical option for me personally. For once having some excess abdominal tissue went in my favour and the bonus of getting rid of that at the same time as creating my Noob (AKA New Boob). Win win I hear you say! I 'lost' my belly button as well and had to have a new one created as you can see.




The surgery experience and recovery really does warrant a post of it's own, so keep your eyes peeled!

Nor did I want an implant as I know these require replacement in the future and whilst still facing more breast surgery in 2018 I would REALLY like that to be it!

Unfortunately I ended up with a seroma a few days later around the stomach wound and had a petrifying experience when I had been discharged, was walking out of the hospital to the car and the wound literally burst open and was pumping out blood and fluid EVERYWHERE. Soaking through clothing and bedding, necessitating a very fast readmittance and wearing this lovely collection bag for a while :-/



Fortunately the relocated 'flap' from my abdomen 'took' very well, which basically means the reconnection of the blood supply was successful (for some this isn't the case sadly and if it fails in the first 24 hours they have to go back to theatre to have it removed) Unfortunately the skin and some underlying tissue on the bottom part of Noob went necrotic (died). Looking back at photographs (I won't subject you to these) it was evident straight away as the skin went purple. During the days that followed it became black and it was decided it needed removing. I was allowed home for a few days then readmitted. This next surgery involved debriding (cutting away) the dead skin and tissue and quite literally patching it up with skin grafted from the thigh on my remaining leg. The graft is one of the most agonising things I've ever had and quite extensive as you can see from the photographs.



It needed to be dressed at first, along with Noob every other day. You can see here, how even in 2 days they got soaked through and I had to patch them up to stop blood and fluid leaking onto my clothes.



Unbelievably I didn't qualify for anyone to come and do it at home as I wasn't 'housebound'. Despite the fact I was struggling with the fitting on my prosthesis and in agony with the other leg, been cut from hip to hip and had a mastectomy....



I felt like I was being held together purely by dressings!

I was unable to drive myself to St James' for these dressing changes at first as the appointment took about an hour and it was extremely painful to have the wounds redressed. It also made me feel quite sick. Thankfully for most part friends and family took me. My best friend since school, Lorna, who by her own admission is squeamish, was thankfully with me AND stayed in the room, on probably the worst occasion. It was agony as the dressings had stuck to the graft site and had to be soaked off. Not only that we sadly encountered the most horrible, cruel Nurse I've ever had the misfortune to be treated by. And yes I did later complain and never had to see her again. Which meant on the whole I had appointments with Lynne in the breast dressings clinic. I became very fond of her and she couldn't be have been kinder. 

I don't think it can be under estimated how important compassion, kindness, gentleness, a smile and most of all communication is when patients are in these vulnerable situations. Despite the cuts, time pressures and general strain on our amazing NHS these cost nothing and can make ALL the difference. Whereas little comments such as 'does it really hurt that much?' Or 'it can't be that painful' or no explanation of what's happening have a huge negative  psychological effect. I can honestly say I've met some very special medics, especially nurses, during this long course of treatment and I will never forget their kindness. 



Waiting for surgery or treatment to begin is hard, a kind of weird limboland but at least you tend to have dates and appointments so can plan and start to try and get your head around it but 'delayed healing' is tough, really tough. How long is a piece of string? No one can tell you when your wounds will be healed and you can begin the next round of treatment. As the chemotherapy I had caused immunosuppression healing can be even more difficult. Ten long weeks after my second surgery I was finally discharged from the dressings clinic. You won't be surprised to read by the end of it the receptionists would say 'Hello Victoria/Mrs Gilbert'. 

During this time Sean went and climbed Mount Kilimanjaro in Tanzania with his sister and a few others to raise money for The amazing Yorkshire Cancer Centre that has saved mine and many other lives. Their contribution being an impressive £3592. It was important he was still able to complete this long planned challenge but going only a week after my 2nd surgery meant I needed a lot of help to survive the ten days he was away and get the children from A to B to C. Thankfully my very own Girl Friday AKA Deirdre, literally flew in from The Emerald Isle. Together with others from #TeamVicki we were kept fed and watered and all shipped about. Hoping Sean would return refreshed in both body and mind was not to be as he came back suffering from Pneumonia, which at first we mistook as Altitude Sickness. So it was his turn to be admitted to hospital! It really did feel at that point that point the odds were stacked against us! Luckily once again #TeamGilbert rallied and helped us through. 

We were also facing numerous challenges, helping the children to cope in their various ways with my diagnosis, illness and treatment. They've all reacted differently and it's been very hard on all of us at times. Sadly their main point of reference where cancer was concerned was the long drawn out, painful death of one of their Grandmothers 4 years ago. 

Ironically the delayed healing meant I was unable to start Radiotherapy treatment until September but it meant I was able to spend most of the summer with the children and we even managed to escape for a couple of short breaks when the dressing changes became less frequent.

Radiotherapy comes next.....

Tuesday, 27 June 2017

Noob

A couple of weeks ago I think I wrote; I'll see you on the other side. Well I am here, on the other side. 

As foreseen I've been to hell and back in the last fortnight. The expected tough parts have been just that...tough. With some added extras that have made it even tougher. 

I'm not even going to bore you with all the details, gory or otherwise, save for saying yet again I came across some incompetent, thoughtless medics who in the end I asked not to be allowed near me again. 

On the other hand I was cared for by some lovely, compassionate nurses; male and female, who were just fantastic. Nothing was too much trouble and they went that extra mile to make me feel ok whenever they could, physically and mentally e.g. toast and jam midnight feast 😋 My consultant is a lovely, caring softly spoken guy, not to mention a highly skilled micro surgeon, who came to see me everyday no matter what time he finished surgery. Which was 11.30pm one night and yes....he still came. 

The surgery was long and tough to wake up from. I always suffer badly from a sore throat after surgery but such a long one meant the tube to intubate me was down for several hours. The only 'perk' of this is eating scrambled egg, soup and jelly for the next few days! 

After 3 days on oxygen, first a mask then tube up my nose, it was so irritated and bleeding that I only lasted another day. I then battled to gets SATS over 90 at every set of observations, constantly being threatened with going back on it. So it was lots of deep breaths, wiggling the monitor etc and Bingo!

The surgery was 'successful' in that during 7 1/2 hours I was in theatre they removed belly tissue and skin known as 'the flap' (hence being cut from hip to hip....ouch). Removed the diseased breast and reconstructed my new boob (or as it's affectionally now known as Noob ;-) a great deal smaller (as requested!) I might add than the right one. Which will be operated on to be 'matched' in 3-6 months. In the meantime I've been given a soft prosthesis so I don't look lop sided! 

The most serious concern after this type of surgery is for the flap to fail.  If this is going to happen it usually does in the first 48 hours but you're closely monitored for a good 5 days. As they also reconnect the blood supply from the abdomen in Noob this is what usually fails...caused by clotting. Whilst in Critical Care they monitor Noob's temperature with a permanently connected sensor as well as manually taking it and checking appearance, together with obs every half hour for the first 24 then hourly for the next 24. Cue light on at each check, tight BP cuff, thermometer shoved in ear = zero sleep. But it's great to know how closely they keep an eye on you. 

Unfortunately it became clear quite quickly that Noob's skin wasn't healing as well as we'd hoped. I had a large blood blister drained a couple of days later and as time went on the area became necrotic, sadly the skin had not survived and had died. There were 2 options moving forward. Leave the necrotic area until it heals and quite literally drops off. This can take several weeks to happen and unfortunately time is not on my side. Any further active treatment needs to happen soon. This will be either more chemo and radiotherapy or 'just' radiotherapy. This is dependent on the pathology results from the surgery. These should be in this week and I'm hoping to receive these and the treatment plan next Monday

So the other option is to operate; debride (cut away) the dead tissue and tidy things up using a skin graft from my thigh. This will hopefully mean much quicker healing and my ability to move on to the next stage of treatment. This is the only option then for me so they planned it for this coming Thursday, 29th of June

So after a week seeing nothing more than the corner of a window and a fan in my face morning, noon and night to combat the heatwave - that I missed - I walked with my prosthetic leg and crutches out of the hospital. It may have been at snail's pace but it was upright and walking!!! Knowing it was only 6 days respite until Mr Akali sees me again ready for the following day's surgery. 

So we're in yet another 'limbo land' waiting for Noob Surgery Round 2, but enabling my stomach to start healing. So I need to focus on that and resting; which isn't hard as it REALLY hurts to move and use crutches and a wheelchair. I'm trying to manage on slow release morphine in the morning and evening, also regular codeine, paracetemol and ibuprofen. I'm still at that stage where I'm counting the hours and minutes until I can take the next meds. Hopefully when this surgery is out of the way I can return to this stage and even beyond it to steal myself for more 'therapy' - chemo, radio or otherwise. 










Sunday, 11 June 2017

Imminent Surgery


It's been a while folks! Chemo 6 really knocked me for six and it's taken some coming round from. Not to mention a tonne of marking, half term holiday with the annual jaunt to Wales and another gazillion hospital visits.



When 6 rounds of chemotherapy have been completed there is a 4-6 week window in which they have to do the mastectomy for optimum results. And so commences chapter and verse as to what will happen next, so buckle up! 



I have managed (very unlike me!) where this cancer diagnosis is concerned, to step away from Mr Google for the most part. Usually when someone says 'don't do....'; like a rebellious school child it's the first thing I do! The oncologist telling me 'Whatever happens don't google Triple Negative Breast Cancer as there are so many horror stories' quite honestly scared me silly. I did eventually read up on the facts about it but on the advice of a fellow #cancerbuddy I stuck to the main sites (Good tip Mrs Thorpe ;-)

I read the details about the raft of side effects the different chemo drugs could cause. Nausea. Check. Vomiting. Check. Bone,muscle and joint pain. Check. Rigid, brittle and discoloured nails. Check. Neuropathy. Check. Bloating. Check. Reflux. Check. Hair loss. Check. No periods (probably an induced premature menopause) Check. Nasty taste in mouth. Check. Tinnitus. Check. Constipation. Check. Loss of taste. Check. Diarrhoea. Check. Sweats. Check. Breathlessness. Check. Dizziness. Check. Hearing loss. Check. Mouth ulcers. Check. Weight gain. Check. Hot flushes. Check. Brain fog. Check. Chemo cough. Check. Yes all of those side effects...and more.

And the third thing I read about; in fact researched quite extensively, were the different types of reconstruction that are available. 



Some of them involve the surgeons relocating muscle to recreate the breast that has been removed. All the surgeons do different types of reconstruction. The surgeon who I've had since the beginning uses the latissimus dorsi muscle to reconstruct http://www.breastcancer.org/treatment/surgery/reconstruction/types/autologous/lat-dorsi 



The head plastic surgeon at Leeds offers another procedure using stomach muscle to reconstruct called The TRAM Flap http://www.breastcancer.org/treatment/surgery/reconstruction/types/autologous/tram



I do want a tissue reconstruction if possible, but why would I want them to use muscle that I need elsewhere?? Back muscle I particularly need for using crutches or a wheelchair and for when I can return to swimming. 



They can also reconstruct using an implant, which I know many have successfully. I'm not keen though on setting myself up for more surgery in the future when needing to have it replaced. I have had sooooo many opertions now I am quite frankly sick of them.



The DIEP Flap surgery seemed a sensible route to go down. I have always been partial to carrying a little extra (sometimes a lot!) around the midrif so growing a new boob there seemed a no-brainer! 



One surgeon does the mastectomy and a specialist microsurgeon removes a flap of skin and tissue (including blood supply) from the abdomen and somehow reconstructs a breast. I will lose my nipple but they 'create' the new area where it will be located from the abdominal skin and will also reconstruct this at a later date using sewing techniques and tattooing. All quite amazing really and complicated and I won't lie; very very scary.



I won't subject you to photographs but below is a diagram of the area they remove and then what the finished result should appear like....in theory. 









Despite this technique being carried out regularly since 1991 there aren't a huge number of oncoplastic breast microsurgeons who have the skills to do it. Unfortunately for me the chap who has been doing so at Leeds Teaching Hospitals is leaving. So I would be faced with accepting the Dorsi or TRAM flap options. So unfortunately I have become one of these patients who faces a postcode lottery of treatment options.  As I'm a suitable candidate for it, if I lived in Hull or York, I would be offered it as a matter of course. 



I'm not resentful of this, although I felt backed into a corner, being forced to accept that if I wanted an abdominal tissue reconstruction of any kind, even the TRAM flap I would need to undergo 3 lots of surgery (mastectomy, reconstruction and the other side done to match). The guilt you're left with, rather than just concentrating on getting rid of the cancer, that you also want a reconstruction; a 'cosmetic' procedure, is huge. But come on I've already lost about 1/4 of my body due a cancer misdiagnosis, why wouldn't I want it? As I am likely to need radiotherapy after the surgery the powers that be at Leeds, quote 'flatly refuse' to do abdominal reconstructions before radiotherapy. I was left with no choice but to look elsewhere. I do feel I should have been presented with these choices as opposed to me doing all the research, especially given the tight time frame. 



To be honest I felt about as low as I could at this point. I could see no end to this nightmare. The treatment stretching before me, well into 2018. Whilst trying to recover from my 6th chemo and receiving the news that I would need to reapply for the lecturing role for September AND now this. So apologies if you were one of the people who asked me how I was or said 'Hi are you ok?' Or 'Hi, you alright?' in the playground at school, the supermarket or the corridor at work and I couldn't even bring myself to answer.



Synchronicity had me in touch with the friend of 3 people I already knew. Carolyn is also being treated for breast cancer but in York. We were in regular contact and it just so happened she is also opting for the DIEP flap surgery. Thankfully she saw a surgeon in Hull who, as eluded to already, was happy to reconstruct at the time of mastectomy i.e. without removing any muscle. This fab lady gave me a head start I needed of knowing who to see in Yorkshire. I could have requested to be referred on the NHS but by this time I was 2 weeks into the 'magic window', so the reality is I would have had to have the mastectomy at Leeds and gone to Hull afterwards. 



Thankfully this time being back in touch with Mr Google I found Mr Akali also consults privately at Hull Spire. Thanks to my lovely Dad I've always had medical insurance since he worked at Unilever all those years ago (in fact I'm still under their group number!!) AXA PPP gave me the go ahead to see him and off we went. 



He said I was a candidate for DIEP Flap reconstruction at the time of mastectomy and said if I wanted to go down this route he could do it on June 15th. He explained to us that more recent large scale studies (which of course with access to zillions of journals at work I've been able to verify - shout if you want any links to read) have only showed minor issues, if any, with having radiotherapy and a number of his patients have had it. This was later confirmed at Leeds when I questioned it. Sadly it seems this 'current thinking' has not been taken on board yet here if women want abdominal reconstructions at the time of mastectomy. 



After an agonising wait my insurance thankfully authorised the surgery plus the follow up surgery to the right side (in 3-6 months time) plus nipple reconstruction and tattooing etc



I can't express my relief, which has meant I was able to relocate my mojo and find the motivation to get up in the mornings again. I feel like a different person. I now can see a possible end to this treatment by the turn of the year (maybe with some more minor procedures to be completed in 2018).



I can't say I'll be skipping off to Hull on Thursday morning; who would, faced with 8 hours of surgery, a couple of days in HDU and 6-8 weeks recovery BUT I feel I'm on the right path for me to get rid of this cancer and move forward. I am quite honestly petrified and dreading it but to coin one of my most used phrases recently 'needs must'. It means 1 major surgery not 2 and hopefully ticking off another step on this hideous journey. 



The next step in early July will be hearing what further active treatment I need. Possibly another 2 cycles of chemo and as mentioned, radiotherapy. We will see what the pathologist has to say following surgery and the outcome of the subsequent MDT (multi disciplinary team) meeting at Leeds but we will cross those bridges when we get to them. 



Understandably my faith in pathologists is not great; as 2 were previously responsible for my cancer misdiagnosis in 1992 but I will find myself at their mercy once again. Thankfully as a result of public enquiries, such as the one I was caught up in and much better practice the MDT including numerous different professionals caring for us then discuss these results and make decisions as to the next step in our treatment regimes.

I feel like I'm on a rollercoaster (I've never liked them) and can't get off. I am not brave or inspirational as I'm regularly told, I have no choice but to continue on this journey and am merely keeping on keeping on. Thanks to all those who are on it with me and those who've climbed aboard since it started.



Tuesday, 9 May 2017

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It's been a while since my last blogpost, for numerous reasons really. I'm afraid this one will probably just be a bunch of ramblings so I apologise now!

I had to have a PICC line fitted as I had the problems with the extravasation during Round 4. As I wasn't able to have sedation I got myself in a real state about it. I guess physical and emotional strength and also resilience were waning, not surprisingly.

http://www.macmillan.org.uk/information-and-support/treating/chemotherapy/being-treated-with-chemotherapy/picc-lines.html#46802

Which makes the calls to remain positive and strong to be honest start to put on too much pressure. I read this blog post from a BBC journalist who is also being treated for breast cancer and hits the nail right on the head, read it here http://www.bigclittleme.co.uk/blog/negative-positivity I realise often people don't know what to say and anything that is said, in the words of my fab friend Sarah, is said ''from a place of love''. These days though we use the 'Hi how are you?' Or 'You ok?' not really for actually enquiring but as a greeting. In reality people would feel uncomfortable if you started spouting all the side effects and how crap life feels at times. I have got to the stage though where I don't feel like saying 'I'm fine' or 'OK' when it's the last thing I feel. I'm scared of the surgery. Looking in the mirror after they've cut me up again and removed another body part. I'm worried about the pain and how hard it'll be to get around afterwards, when trying to use the crutches too. I'm wondering if I'll get the all clear or if the cancer will come back. Whether I'll get to see my children grow up and my beautiful girl in a wedding dress. This is the reality of cancer and when you find yourself staring your own mortality in the face....again.

I try to remain 'cup half full' as opposed to empty, for example when in the centre of Leeds at 5pm waiting for Jack to have his counselling, having to sit on a bench as the cafes are closing and I can't face the walk to a posh shopping centre, then it takes an hour to drive home. I TRY to focus on the positive that at least he's getting the support he needs. But it's HARD, I just want to be at home....and not have cancer. For my 6 year year old not to have to cling to me and say 'I don't want you to die'. My 15 year old not to have to stay at school because she can't bear to see me so ill or sob when I need to ask her to help me cut a dressing off. For our lives not to be dominated time and time again by my health and the shit sandwich we seem to be dealt. But this is the reality for now. I hope it's temporary and we can be happy and care free again at times and for the children to have nothing more to worry about than where their fidget spinners are or whether they're invited to the next party. I don't mean that I expect life to 'get better' I truly believe this is LIFE. Everyone has their fair share of challenges, some more than others in reality but we have to face them and get on with it. No one else will do it for us. We won't always get it right but as I've told Jack this week facing his SATS; we can only do our best.

I'm spinning so many plates and some days I want to just pull the duvet over my head and stay there. But I can't; children have to be roused and given breakfast and be deposited at school, usually after some meltdown or argument between them. Students need to be tutored or observed and assessments marked, lit reviews written and emails answered. My job does make me feel better, valued and of course distracted. I can be Vicki the teacher, lecturer, colleague and friend NOT Vicki the cancer patient.

Round 5 hit me hard. The side effects kicked in before I even left the hospital. And to cut a very long story short I could hardly get out of bed from when I came home that evening or for the following 5 days. I managed a few stints on the 'not very comfy couch' so opted for my pit instead! Nicola injected me there every day and I had visitors, some meals, lots of ice lollies and ice cream there too! And yes for once I RESTED.

I am finding great solace in my friends, new and old, who are also being treated for cancer or have been. Also friends whose children are being or have been treated for this dreadful disease; with brutal drugs that burn your skin, harden your veins, give you mouth ulcers and tear skin off the roof of your mouth and hands, make the hair on your head and the rest of your body fall out, make your hands, feet, face and lips numb or tingle, make you feel sick and be sick, require huge amount of drugs that have side effects themselves - sleeplessness, hunger, thirst, constipation or diarrhoea, give you bruises and blisters, muscle aches and bone and joint pains so bad that heat pads and even oromorph doesn't touch them. Hideous reflux, sore watery eyes, sweats, breathlessness and weight gain. Your kidneys lose magnesium and your iron, calcium, white cells, red cells, ALL cells, haemoglobin and vitamin D become low. These folk therefore just 'get it' but it breaks my heart seeing and hearing about it ravaging them and their children...... We can talk, mostly via text, whatsapp and messenger and empathise but also help and support each other.

The kind messages, cards, emails, hugs in the playground, meals, flowers, gifts, trips for afternoon teas, offers of help, food parcels, ironing, childcare, lifts, company and cups of tea help MASSIVELY and are enormously appreciated. We quite literally couldn't get through this without you all. Thank you from the bottom of our hearts.

So as I face Round 6 tomorrow I don't expect the side effects to be any easier or recovery any quicker, to be honest maybe harder. I will have my mastectomy 4 weeks on Friday then wait another couple of weeks to find out of I need more chemo and radiotherapy. The reconstruction will come later. This is going to continue to a be a very LONG journey so I need to take one step at a time and get tomorrow ticked off first.

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