How was it for me?

On Monday, day 5 after the operation, the doctors took out the last drain and immediately allowed me to go home. At the time it was a bit of a shock and I wasn't sure that I was ready, but in retrospect it was the right decision. It has been much easier to sleep at home, the food is a lot more appetising and I have less risk of infection.  My in laws have lent me a motorised chair which moves up and down at the touch of a button (just like those found in old people's homes...!) and I have been able to sit in the chair for the majority of each day - reading, sewing, watching box sets of The House of Eliott (one of my favourite drama series from the 1990s) and being waited on by my fantastic and long-suffering mother. The perfect recuperation.

About an hour prior to my discharge from hospital, a volunteer brandishing an IPad was sent to interview me on my experience of hospital.  Given how much press time is devoted to the NHS, both positive and negative, I thought it might be interesting to summarise here my thoughts on my (admittedly quite narrow) NHS experience. 

Prior to the operation, I have to admit that I was not particularly impressed with the administrative side of the hospitals involved. The plastics team, in particular, were very difficult to reach by telephone and if I had not been a pretty persistent caller, I have a feeling I would have become lost in the system and the estimated wait of 4-5 months would have been much longer than the actual 6.  Furthermore, with two surgical teams needing to co-ordinate to perform the operation, there was considerable confusion over which pre-assessment protocol was 'correct', with the two consultants having different views as to when the relevant blood tests should be carried out and how long before the operation I should stop taking Tamoxifen.  This confusion definitely increased my anxiety and apprehension at a time when I was already pretty anxious and apprehensive - and desperately trying to prepare myself for the weeks ahead.

All that said, once I arrived at the hospital at 7am on the day of the operation, I really could not fault the care and attention I received. Once the operation had finished, I spent 2.5 hours in recovery, being checked constantly, including once by the surgeons themselves.  When I asked to speak to my husband, the nurse brought me a phone, dialled the number and put the phone to my ear.  Having been transferred to the ward, I received at least hourly checks (including verifying the blood supply to the new breasts with a doppler each hour) and every request for attention was answered promptly and without any sense of annoyance or inconvenience. I was made to feel safe and secure, and as though my care - at least for that first night - was an absolute prority.

Throughout the rest of my 5 day stay, I remained thoroughly impressed with the quality of care provided and with the following especially:

• Each nurse on the ward was experienced and knowledgeable as to the ramifications of the type of surgery I had experienced.  Their clear knowledge and experience helped both to put me at ease and made me less afraid to ask questions than I might otherwise have been.
• Despite their huge competence, the nurses also knew their limits and were swift and happy to seek advice where necessary.
• The mastectomy and own tissue reconstruction was an operation that they see relatively often on the ward, as it is used for both cancer patients and those (like me) who are seeking to reduce their cancer risk.  They therefore had a protocol to follow, which they did, but without it feeling formulaic or as though they were 'going through the motions'.
• Perhaps most importantly, the nurses were all personable people who really listened and tried their very best to alleviate any patient's concerns, despite being on their feet practically constantly for 12 hours at a time. As it is a teaching hospital, the nurses were often accompanied by students and it was clear that they really took time and effort to explain each procedure to the students and even let them practise certain techniques under close supervision.  This in turn meant that the students themselves seemed to find their experience rewarding and gave their all to every mundane task, such as washing patients' hair or serving food.

Overall I would say that this hospital stay was a very positive experience - much more so than I might have expected following the administrative confusion beforehand.  For me, it definitely highlighted what a vocation nursing is.  They really do make a difference to people's lives - how many of us can really say that about our careers?!

The recovery begins..

After a pretty horrendous night sleep on Tuesday, the operation went ahead as planned on Wednesday.  It was all a bit of a rush after we got there at 7am with interviews from the surgeons, anaesthetist, nursing and research teams within the space of less than an hour. Then I was immediately wheeled off to the anaesthetics room and I don't remember much else until I woke up in recovery 8.5 hours later.

The first night was difficult, with lines and tubes everywhere (including oxygen tubes up my nose) and hourly check ups by the nurses. I did manage to sleep a bit though and, as long as I didn't try to move, the pain was manageable. The next morning, after having been checked by the doctors, out came the oxygen, self - administered pain pump and arterial line. And - I was finally allowed to eat something after 36 hours! 

I started out with four drains - two in the breasts and two in the  tummy - and over 3 days they have gradually been removed so I 

am left with just one in my stomach.  The nurses did encourage me to try to get out of bed and sit in a chair on Thursday but both times I had a faint spell and had to get into bed pretty quick with some oxygen. Clearly being vertical was a little too much for my body after over 24 hours horizontal!

On Friday however I managed quite a few walks to the bathroom and back by the end of the day and with only one drain left mobility was a bit easier.  I do have to walk around hunched over (to protect my stomach) so do look a little weird but I am getting a little straighter each time. Today I even managed a shower (seated, with assistance...) which made me (and my hair in particular) feel much better and apart from a couple of episodes of unexplained tachycardia today I have been steadily improving.

I haven't felt up to many visitors but it has been wonderful to see  my wonderful mum, husband, and sister, as well as a very close friend. It has been fantastic to see them and hear snippets from the outside world from them and via social media! I have had such fantastic support and really could not have done this without it.   I always knew that recovery would be slow and tough, but nothing can really prepare you for the enormity of it all.

Less than 12 hours to go...

So, here we are, the day before the big operation.

I have been through the full range of emotions in the past couple of weeks, to be honest, but still feel that, all things considered, I have made the right decision.  Having been waiting so long, I just want to be out of the other side now, where I know longer have the prospect of an 8.5 hr operation hanging over my head.  Over the past week, I have finished up matters at work for a while and organised a 3rd birthday party for my son; both have gone pretty smoothly, so all remains is to get through the next few days in one piece!

 We came into London this evening and had planned to stay in the hospital accommodation but when we got there we found a room no better than low grade student digs, with a broken shower and phone! My heart sank, as I had been hoping for some comfort and at least a good wash before an early start tomorrow. My wonderful husband immediately got on the phone to the site manager who agreed that we could have a full refund, so off we went to the 4 star hotel across the road where we managed to get a room for two nights, costing not a great deal more than the hospital digs.  A delicious French meal later and we are both feeling considerably more relaxed, although finding topics of conversation over dinner that did not involve operations or hospitals was a little difficult!

It was really hard to leave my little boy this evening, but he had no idea what was going on - perhaps another good reason for doing it while he is young.  He will be perfectly looked after by his grandma, daddy and aunty and I have no worries at all in that regard, though I will miss him terribly. I have to keep remembering that I am doing this to try to make sure that we can both continue to enjoy his childhood with the minimum of worries.

I am prepared for pain, discomfort and all the potential problems associated with recovery from major surgery. If I can get through this without major complications or setbacks, that will be all I can hope for.  I have had so many messages of support from family and friends today - I am very lucky indeed to have such wonderful people fighting my cause.  It is true that it is when the going gets tough that you realise who your real friends are - and I am extremely fortunate to have more than my fair share.  If any of you are reading this - and you know who you are - THANK YOU.