Phase 2 - OVER! (Part 2)

(Continuation from Phase 2-OVER! (Part 1)

The next few days in hospital I noticed an accumulation of fluid not only at the mastectomy site, but swollen on my abdomen, lower tummy and even groin - it looked like I had literally doubled in size. I informed the Ward Sister and consequently saw a doctor - who reassured me that although this was no emergency I would see the same locum doctor who would assess me further after the weekend. On the Monday afternoon this doctor assessed me, and as the swelling had not gone down, requested to aspirate the area once again (withdraw fluid). During a morning visit from the pain nurse it was discussed if this procedure was to be performed again I would have access to morphine and entonox (gas & air), and so informing the pain nurse of the oncoming procedure all drugs to be used was prepared and ready to go.  Ahh yes, I remember you entonox - a familiar feeling to this pain control as I was able to fully relax. Only 50mls was withdrawn and I was now feeling extremely sore by this stage. It was agreed that I would see the surgeon in clinic within a few days and informed that despite the extensive amount of bruising and large swelling that all was ok. I didn't feel like all was ok though. It was previously agreed that I could go home after this procedure as I was medically stable but advised to spend another night in hospital due to the procedure and drugs given. I accepted the offer of another night's stay - after all I was in good company with my friends being nursing staff! On the positive side I did get to meet the prosthesis lady - and after an awkward introduction got on really well. I learned that only soft padding was used until the tissue had healed enough to allow a special made prosthesis and bra to be used - which will take about 6 weeks. Feeling much better about this, I set to look at the numerous leaflets and booklets left to furnish me with further information and advice.

I was discharged the following day. I found saying goodbye to the staff on the ward hard and fighting back the tears gave them all a hug. It felt good to finally be free. But my mind was far away from going home - instead hubby and I made our way to a comfy pub! I sat down in the cosy couch, cuddled up with hubby and a bottle of cider - only this was making me quite tired and sleepy. An hour and a half later and still clutching the same bottle hubby drank the last of my cider and we went home. As I found I couldn't hold my eyes open I went straight upstairs to bed where I slept for most of the afternoon. That evening and onwards was the start of my rehabilitation. Or so I thought. My husband had previously arranged the rest of the week off from work in order to help out. As I had seen enough of my house over the last 6 months the rest of that week was spent meandering around different shopping towns, going for coffee and just enjoying my husband's company. Only the first day of doing this I knew I had overdone things and found the swelling to be bigger and more painful.
As days wore on the original bruising from the lowest point had now spread to the groin and top of my legs - gravity had taken over.

Later that week I saw the surgeon in clinic. The results from the op was in - good news. Firstly, all of the remaining 16 lymph nodes that was removed none showed no evidence of cancerous cells - the cancer had no further spread. Secondly, the tumour that grew to 2.5 cm was reduced to 9 mm-showing that chemo had been extremely effective.  So then, extremely good news. As by this stage I was quite concerned about the extensive swelling that was showing no signs of reducing in size, I discussed this with the surgeon. I was told - quite nonchalantly- that all is ok, the swelling is 'quite normal' and that he is sorry that other staff have made me anxious. This surgeon offered to aspirate the area again - and in doing so was unable to withdraw any fluid from the site. I was told that the swelling had formed a 'blackcurrant jelly' substance which was why fluid was not forthcoming and the swelling would eventually reduce.  Despite his best efforts, I was not reassured that nothing was wrong. Especially when the swelling felt like I was carrying 2 large bricks around my chest - tight, heavy and extremely uncomfortable.

The weekend was good - catching up with lots of family members with bbq's and lots of fun times. The following week my mum came over to help out as hubby returned back to work. Each day I tried hard to get myself back to normality - completing physio exercises that was given and taking things very easy. However I could not shake off the feeling that something was still not quite right about the swelling. I had my first radiotherapy appointment at a different hospital yesterday in order to assess the area and to mark out the relevant spots for the oncoming treatment starting in a few weeks. I was called into the room and showing the radiographer the swelling from the mastectomy all treatment was then stopped as the swelling had made it impossible for any treatment to continue. The staff apologised profusely, saying they will ask one of their own doctors to assess the swelling and await for further advice. After a 20 minute wait I was seen by a different doctor who asked lots of different questions and then examined the bruising and mastectomy site. It became clear he was concerned about the amount of swelling I had. Then came a clue to what was going on - I was asked if all previous withdrawals of fluid was guided by ultrasound or 'gone in blindly?' To which I answered that I have not had an ultrasound at all post op - leaving me to now believe that all attempted aspirations was not successful due to no attempt made to see beyond the superficial layer of skin - and should have been looked at to find out where the fluid was actually accumulating inside the tissue layers.  With this information, the doctor made me an urgent appointment for the breast unit the same day for further examination under ultrasound. As this appointment was 2pm, hubby and I set off to have lunch and a sit in the sun!

2.20pm I was called in to see the radiographer. The entire area was closely examined under ultrasound. The doctor and senior radiographer was called in and discussed with myself and hubby that indeed there was an extensive collection of fluid around the lateral chest wall. A suggestion was made to aspirate with local anaesthetic. I felt very glad to hear this as suddenly I didn’t feel the hypochondriac I had been made to feel over the last 2 weeks. So, as the area was numbed completely, 60ml syringes were being passed over to the radiographer. As the staff was talking to me (distraction) I was aware more and more syringes were being used. I checked to make sure hubby was ok and still conscious! and finally the procedure was over.  It was then I was informed that 11 syringes had been used to withdraw the fluid and a whooping 720 ml of serous fluid had been removed from the mastectomy site. 720 ml! As I stood up it felt like I didn’t have bricks plastered to my chest anymore and, in fact, I felt fairly normal with a small amount of swelling. The radiographer warned it would be normal if the swelling returned, if so to call the hospital and an immediate appointment would be made to ensure this fluid is removed. The radiographer also stated that she was surprised she didn’t get a call from the surgeon or his team to perform this procedure. So, what I thought might be a waste of time appointment turned out to be very productive and effective time spent. I now feel that I have been completely fobbed off by my surgeon when it was clear that all was not normal at all. I also feel angry that this hospital has had to mop up the original hospital’s evident cock-up. WHEN are things going to run smoothly for me? In this sorry state of affairs, things have been bad from start to finish. For this reason and the other cock-up of the tumour spreading that I am now going to start pursuing a complaint and compensation claim – especially as this is now going affect my rehabilitation resulting in a delay to return to work.

So, to try and get a little respite from all of this we are going to enjoy seeing my extended family. I know there are corrupt organisations out there – but I don’t feel that the care I have received has been corrupt, just lazy and opinionated. This has to change – and if it takes me to complain to prevent others going through this same bad journey that I have, then so be it.