The earth’s axis tilted
All at once
Which path to take,
Which one is clear.
Surrounded by fear.
Who do you trust.
The head and the heart battle,
The body too faces struggles.
Confidence begins to shatter,
And you lose yourself
On an emotional platter.
Highs and lows
Come one after the other.
What a hand dealt the dealer.
She blew out the cobs webs
And brushed herself down.
Gave more of heart
Than she’d ever owned.
The strength in an embrace
Restored her faith
And balance was restored once again.
My previous blog talked about the journey and sometimes the journey is bloody hard and unfair. A couple of weeks ago I was so angry at the situation and my own inability to get on and do things. Having said this I could see that I had not slept properly for some time and I was also feeling very sick and my stomach felt very poorly coupled with the pain in my right side, made me feel very low. I woke up 3 hours after I had gone to bed and I was really hungry at 6 in the morning. I went in to the kitchen, the one I have hardly been in since being in the flat, so I have no idea where anything is. I go to pick the kettle up and remember that I can’t use my right arm because the kettle is too heavy. I decide to fill the kettle with 2 small cups of water rather than take the kettle to the tap. Once boiled I realised that I still needed to lift it to pour water in to the cafeteria. I try to do this with my left but my left hand shakes, especially when I’m stressed so that isn’t easy. I then try and locate a frying pan but it’s out of reach, so I use a saucepan to make some eggs. I try and use my right arm just to break some butter with the wooden spoon but I struggle to do that because I don’t have enough strength in my right arm. I get the butter in and break the eggs in, which also requires movement. Then I realise I can’t turn the salt and pepper mills to get some seasoning in the eggs because they are stiff. At that point, I have tears rolling down my eyes and I was so upset with myself. The thing is my son had told me the night before to just wake him when I need something but I get more stressed relying on other people to do things for me as they never do them in the time or the way I do it. I sat down to eat my eggs and only managed half as I was now feeling even more sick and frustrated. I then started to think about my life and how bloody hard it’s been and before you know it everything feels negative. Fortunately, this passed but not without the care and concern from friends and supportive words. So then, I make a start on my life admin. This is what the children call all those tasks that involve sitting in one place and dealing with your affairs.
All the utilities, TV license, driver’s license, banks, credit cards and the list goes on. The move was exhausting not to mention the operation but the lymph nodes were clear and that was amazing given each time I had gone to the hospital, I walked away with more negativity. Then last week I was completely shattered and struggled on a couple of days to even wash because the arm and shoulder hurt so much. On top of which they decide to insert a port, which involves another procedure, where they cut just near your arm, my right arm now and just below the collar bone and then insert a port between the two to allow them to administer Chemo intravenously without injecting the veins. My whole neck hurt, my head hurt and I really had, had enough of everything. Last night I realised how frightened I was of the future and how you stop thinking about it to the point you won’t allow yourself either to dream or even look ahead and whilst living in the moment is great, sometimes fear sets in and it’s become difficult to see the wood from the trees. Despite all this I went out with my friends Friday night and had so much fun because essentially life stops for no one and to get through it we all need friends and family and I am blessed to have people in my life who care.
We all walk through life hoping to get somewhere and forever focussed on the end goal, be that a job, a relationship, where we want to live, etc. Often we all forget to enjoy the journey because we are so focussed on the end goal. I have been guilty of this most of my life, as I have focussed on bringing up my children and getting a career, however since last year I started to consider the present more than the past and the future and interestingly the cancer journey has also forced me to focus on the present. I realise that I don’t need to get anywhere fast, all I must do is live this journey to the best of my ability so I can be as healthy as I possibly can to live and enjoy the present. Why worry about a future that we have no control over! What will be will be. So as I post this I remind myself to live for today and enjoy the day regardless.
I am back in hospital and we are discussing my treatment and the fact I have to have some sort of port inserted into my collar bone after today’s procedure. This will allow Chemotherapy treatment to be administered intravenously without using the veins in my left arm continuously. So my son suggests that he jack me up to his guitar from the port and play music which they both find hilarious. Humour is definitely the best medicine when you’re worried and as long as he doesn’t jack me up to his amplifier it should be ok.
The attitude of the nurse yesterday morning was so poor that I wonder why some people do the job they do. She asked me all the relevant questions without engaging with me whatsoever and then just left the room without going through the procedure. She returned and put a packet of socks on the bed but still failed to tell me when I would be collected, whether I needed to wear the socks because I did not recall having to wear them the last time. The kids and I looked at each other wondering what would happen next, so my son went to locate the nurse and ask her to go through the procedure. She was apparently quite rude and told him that I should know the procedure given I was in hospital not that long ago. This is not the sort of attitude you expect from anyone when you are going in for an operation. I have an excuse to be rude and stroppy but why do these professionals think it is appropriate to behave in this way. It’s not just been this nurse but others also have behaved as though they are doing you a favour, e.g. the nurse who brought my medication. The jug of water is quite heavy and I am not allowed or able to lift with my right hand and I am unable to lift with the left hand because of the weight. This does not occur to the nurse despite the fact she is supposed to be caring for breast cancer patients. She only pours the water when I ask her to so I can take my medication. I am appalled at the attitude and service this place has provided. When I arrived yesterday morning reception asked me to check my details and lone behold they have the name of my GP wrong again. I make a point of this and the receptionist tries to fob me off with a very poor explanation of how my GP may not be registered on their list. Then why bother asking for these details if they don’t correspond with their lists. The last time I was here and having an ultrasound on my breast, my son was told not to sit in the waiting room directly opposite the rooms as women were changing, however when I was getting changed the nurse left the room opening the door. Opposite the door were 2 chairs in the waiting room, sitting on the one, that faced directly in to the room I was in was a man who could see everything as I changed. This happened twice once when the nurse left the room and then when she entered. I was so exhausted on this day to even raise this with the staff and somehow, I don’t think it would have made any difference. A few years ago I had a motorbike accident in Thailand and was treated in a private hospital in Phukett. The care provided by the nursing staff was second to none, from how they removed dressings to how they spoke to you. I noticed when I returned to the UK how different our care was. So what has happened? Are our healthcare staff overworked and underpaid? I would have considered this a possibility if I was in an NHS hospital and not a private hospital. These are certainly issues I will be raising with the board of this hospital.
Also the nurse asked me for the same information I was asked 4 weeks ago, the same information the anaesthetist asked a few minutes later. She completed the same paperwork that was completed 4 weeks ago. I look at the paperwork and wonder why in todays modern world this hospital is using paper records which is a complete waste of money and resources. Why are they not investing in modern technology and have digital records and information for nurses to access which would subsequently reduce the amount of time they would have to spend doing administrative tasks and increase the patient care time. Or am I thick?
I had my lymph nodes removed yesterday and the pain was excruciating inside, that tears just rolled down my cheeks. It’s easier now but it is so much more uncomfortable than the mastectomy and reconstruction. Oh and not to mention the dreaded drain again so no wonder I’ve been unable to sleep despite having had an anaesthetic. Ah well I have all day tomorrow to sleep given I’ll be in hospital another night tomorrow.
When I spoke to the surgeon this morning and he was highlighting the risks of this type of surgery. He explained the risk of lymphedema, swelling of the arm, infection in the implant and numbness in the top part of the arm. This was worrying especially as I already know how easy it is for nerves to be damaged in surgery. As a result of surgery I have numbness in my left leg from an ACL reconstruction, I also have numbness on the right side of my jaw after I broke my jaw in Thailand. So I know only too well however my arm is still functioning well and there is no numbness, what a relief! Having said this the surgeon informed me that I have to be careful with my right arm from hereon. In other words I have to be very careful not to cut it or subject it to any type of trauma, he specifically used the example of gardening and being careful that nothing cuts the arm or hand. Also if I travel on flights I have to wear a stocking on the arm to protect it. I ask the children to buy me one of those cancer bands to wear on the right wrist as a reminder because its so easy to forget and allow a medical profession to carry out a procedure on that arm.
Today it has been hard to tell myself to enjoy a journey where my right arm is in so much discomfort and even more incapacitated than I was before.
Sometimes the nights are long
And the world has deserted me
No one here to hold my hand
Or bring comfort to the pain.
You come alone and leave alone
Life stops, not for you or me.
Walk the line and shed some tears.
Pain is just a journey.
Everywhere I have been
And everything these eyes see
I see alone.
Because the world has no sympathy.
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