Some of you may know I had found another two lumps in my neck (same side as last year) in February so was sent to have an untrasound on them. One chap checked and then got his senior to check & have a chat with me. They were confident 99% that these lumps were a lipoma and nothing to worry about. They were small anyway (measured less than 5mm) so they cannot biopsy something so small.
This appeased me and I went away feeling OK but after a while I was still worried about them 3 month later so my Oncologist referred me to a head and neck specialist but due holidays (mine and ENT Consultant) the appointment would be September when I was back from my own holiday.
The appointment was on 3rd September. I showed him where they were and immediately he said ‘I’ll do a biopsy now’ ‘oh ok, are you going to numb my neck?’ ‘No, it will be over quick’ so as I lay back and Jeff held my hand he went in with the needle. Thankfully he was able to get cells so he said they would be sent off and he thought that a partial sweep of the neck would be a ‘good idea’.
Rewind back to February 2014 and the head and neck surgeon I had to do my original biopsy that confirmed I had secondary breast cancer. I had asked him if he could take all the nodes involved and he said ‘oh no, that’s TOO big a surgery, possibly paralysis and issues with nerves no, not a good idea’ and at was the end of the conversation. But I do remember the day of my biopsy he said ‘so where are these nodes then?’ And I was told ‘so you had breast cancer on the right breast and you have nodes on the right?’ ‘No, no, no (I expected him to say ‘silly girl’) that’s not breast cancer!’
Erm wrong… He was due for retirement and obviously didn’t need to go on a refresher course…
So I was booked in for ‘radical neck surgery’ on Thursday 24th September.
I arrived at 7am after leaving Regan and Faron with my sister. I told them the night before so we didn’t worry them and have days thinking about it. I talked to their form teachers so that they could keep an eye on them if they were upset but I had it in my head that I would be out the same day (maybe overnight). Poor Regan was very anxious and we had an issue with him before we left. Off we went, Jeff came up with me then left as he wasn’t allowed to stay. I met the surgeon again, I could tell he had the same mind set as my Oncologist so I felt safe and got on well with him. He drew which side it was and talked about the risks from nipping the jugular to a ‘chyle leak’ from an area in the neck which drains fat. He also confirmed histology it was cancer in my neck (no shock) but will have to wait for the histology reports in two weeks time as to what (highly likely to be her2+ breast cancer). Risks signed for I was gowned up (nice paper knickers) and on the trolley ready to be wheeled down to theatre. It’s funny as I am a person who plans but for anything like this I literally don’t think about it until the day and then that’s it I’m on my own. Jeff had gone and panic sets in and fear and the enormity of what’s happening again.
After what seemed like a trip from one side of the hosptial to another (I was told to give the royal wave on the bed) seriously it must have been 1/4 mile away from theatre! I was pushed into the pre op room. Heavy breathing (me) and questions about my veins (them). No they cannot use my portacath as if it caused infection then they would be in trouble (I get it now but still seems silly that they are so worried when they could just plug me in). So they couldn’t access vein, 15 minutes of slapping my hand, having a tight tourniquet and pumping my hand they decided my veins were too small (what did I say?) so ended up with the cannula in my wrist.. awful! They numbed it before putting the needle in but shit, it hurt like hell. I could NEVER be a drug addict and inject myself. Ever.
Hands sweating 3 of them around me the anethatist and helper and my surgeons helper held my hand whilst I cried, started panicking and told them how I hate all this shit! The drugs hit I was out.
I woke up on the recovery ward with an oxygen mask and a Spanish nurse called Steven taking my obs. I was out just over an hour from what I could tell and woozy. I had morphine for the pain and I remember my arm going red from the drugs and I kept telling him ‘it’s red!’ They monitored it but it was ok, just had a minor local reaction. Unfortunately there were no beds on the ward so I ended up stuck on recovery from 12 – 4pm. I didn’t get a cup of tea or toast until I asked at 3pm. By this time I felt rough and the anaesthetic was making me feel very nauseous. Tea and toast didn’t help and was nearly sick after eating and drinking. I had anti sickness. Finally got onto the ward and I had a lovely side room on a ward that had only just opened a week previous (see en suite!) They didn’t get my belongings till 6pm. No one could get hold of me or knew where I was. Anyway finally rang Jeff and told him I was ok and not to bother coming in as I was feeling rotten from the anaesthetic. Still very woozy eventually had to get up to the loo and ended up hung over the sink with watery sick mouth so had to call the nurse. The registrar came to see me later that night and the main thing was that they seemed to have everything in neck they wanted to so I was happy with that. I had a look at my neck and all I could think was I just needed a screw in my neck to go with the Frankenstitches! Ah well.
Next day the registrar came to see me again and seemed to think I had a ‘chyle leak’ in neck which is a drain in my neck. They needed to check the blood from the drain and confirm it before taking action. No one came all day to do this so next morning another registrar came & said she definitely thought it was this chyle leak so they have to cut ALL fat for 2 days until it stops then reintroduce fat to make sure it’s not leaking. Two days? So NO butter, or dairy.
So I’ll be in for another 2 days at least… (They should have started this yesterday). Ah no fat is fine I thought, I do a low fat diet normally so understand what I can and can’t have. After googling this it was was pretty dire… Most things have fat in so my ‘diet’ consisted for two days (no dietician as it was weekend so nothing could be ordered) of lovely iceberg lettuce, 1/2 a tomato and a few slices of cucumber with some chicken breast (see photo below). Tea time I ended up at the restaurant for a jacket potato (no butter).
I felt starving.
Jo and Jane came to see me that night and brought blueberries and raspberries (yum) a word search, magazine, adult colouring book and pens! Thanks to all who visited, you all gave me a laugh and for the cards and flowers.
Two meals of this and I was ready to eat a horse. I’d already been eating fruit till it was coming out of my ears as I requested a fruit salad that Jeff brought in twice. Breakfast consisted of dry bran flakes and black tea. I felt sick again. Lunch came round with the NHS salad and I felt even more sick. I texted a friend as she was asking me how I was and she was going to send in a food parcel and told Jeff to call at hers in 3/4 hour and he could bring it down.
Lifesaver, Diane sent me a fab veg soup with chick peas in and a lovely spinach and fig salad. It was absolute heaven! Thanks so much, that was so kind of you.
The drain was full so they changed it and monitored it overnight to see how it was and whether the cloudy fluid has stopped. Obviously it had done the trick as it stopped and the next day I had just finished my dry bran flakes when my consultant saw me and said I could start ‘normal food’ again (Yay!) and then if all ok the next day I should be able to come home. So I ran after the HCA who was able to get me Wheetabix with hot milk and a proper cup of tea.
I received a text message from my friend Jo who was coincidentally at Manchester Royal Infirmary with her son in the Children’s Hosptial for a routine blood test. I tweeted her ‘I’ll be there in 5 minutes!’ And set off down the corridor to the other end of the hosptial where I eventually found her. We had an emotional reunion. Last time we saw each other it was probably about 3 years ago in Manchester for a reunion with another friend. We caught up and had a good chat for 1/2 hour and plan to meet up again soon.
When I returned I was then moved to the ward as they needed the bed for someone just coming out of theatre. That was fine by me as I was a step nearer to getting out! So in the afternoon I moved onto a ward. The woman next to me was like Denise from The Royal Family… On the phone talking and talking at an old patient next to her who was unable to get a word in edgeways… I sat on my phone and iPad and tapped away in my own little world.
There were some very poorly people on the ward. No other breast cancer patients on there. A lady across who had cancer of the neck and nodes and reconstruction of her jaw. Another lady next to her who had a tracheotomy who had the nurse give me a tissue which she had written on it ‘hello, I’m not being ignorant but I have cataracts and cannot see you’ so I went over for a chat. Aw bless. Another woman with American accent turned up ranting causing a problem who obviously and the same issue as me with a chyle leak but had discharged herself and seemed to be very unstable, swearing (with Denise stirring things) and then ended up calling the staff after she decided to sit outside until 4am smoking until a nurse found her and accused her of drinking! Yes she had a bottle in her bag and surprise she would then have to be fed through a tube to stop the drain and then have an operation to resolve the problem. A complete drain on the NHS and Denise demanded to stay in as ‘she could fall at home’ so seemed to be using it as a hotel and complaining about the food…
Get me out of here.
My consultant came the next morning after an eventful night (I heard and saw nothing with eye mask on and earplug in) so I told him if he didn’t release me I was prepared to pull the drain out myself (joke) but he was happy for me to go home. Later on, a dose of morphine for the pain the nurse came to see me to take the drain out. Stitch out, she failed to pull it out after 3 attempts of tugging, so got the sister to do it, a deep breath and she whipped it out. Urgh! Sweaty palms again it was thankfully over. Cannula now out of my wrist and the shackles were off and nearly ready to make a dash for freedom.
The Doctor signed and sorted the discharge details (why DOES it take so long???) no tablets needed I was just on paracetamol for the pain. My friend Jayne came to pick me up as I wanted out of there quick. Christies had actually called to say that North West tonight and Granada reports may want to interview me as the Perjeta story again broke and I was in the MEN.
Shame they used a primary breast cancer patient who had been on the drug. I wanted to talk about the cancer drugs fund and talk about Kadcyla and other drugs being removed from the list for patients like myself who have secondary breast cancer so then less options.
It was great to be home and see the Saddleworth hills. It was a beautiful day and I know how lucky I am living in such a lovely area. Hopefully won’t be too long before I’m back cycling and running around there. Thought you may have noticed I’ve not been posting my cycles and runs!
So I’ll be back for the results in a couple of weeks time and then talking radiotherapy to zap the bastard.
It’s been a hard few week and months so I’m hoping that after this I may get a break from this for a while as its seemed relentless. Can I continue with the 3 weekly treatment without any other interruptions and problems for a while please? It’s felt like a full time job as well as everything else going on in my life with family life and my web site. I don’t need any further problems! One thing I’ve learned, nothing is ever straight forward…