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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.

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.....

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