I’ve completely lost track of time, days and appointments, given it has been almost 3 months since I last updated my blog. Mainly because so much has happened since Chemo began to me, both physically and mentally, that I have been unable to focus on anything else. It is amazing what the body can endure physically if you are well mentally and vis versa. All medical staff that I had contact with at the outset told me that my mental attitude would affect my recovery and my blog today looks at the journey of Chemo thus far. Mental health is so important, and I cannot thank Al anon enough for the support they offer. It is there slogans that keep me balanced and rational without getting to caught up in my own head or the stresses life presents.
Chemo Brain and Body
Sometimes it’s unknown
The road life takes
Unfamiliar with everything
You have owned.
Sometimes your patience
Wears you thin
Unable to carry
The heavy load within.
Sometimes your body
Turns for the worst
And organs scream
To replenish the thirst.
Sometimes the eyes
Are blinded by fog
Grasping to threads
As faith is dislodged.
Sometime the heart
Can give no more
So you dig deep
To find a bit more.
By the beginning of June I had completed 2 sessions of Chemo and was still trying to resolve administrative issues associated with moving. The plate is full and I can’t see the wood from the trees. I try and deal with one thing at a time and each time hit a brick wall. One of those brick walls was Scottish power with whom I had accumulated a debt from my home in Devon. The thing is the debt wasn’t all mine because I wasn’t even living there but I am responsible for the payment of it. I call Scottish Power to set up a repayment plan. I explain about my illness and the situation to the young man and why I have incurred the debt. I ask if Scottish Power have any schemes to assist individuals like me who are diagnosed with sudden illnesses. I had to repeat this several times because apparently, he could not understand what I was asking. I then proceed to ask him what the minimum payment Scottish power would accept as a monthly instalment plan and that way I can make an informed decision about how much I can repay a month to repay this debt. He informed me that Scottish Power did not offer instalment plans and given I had used the energy why did I think I didn’t need to pay the debt. I’m now at a loss and am struggling to think clearly now. I tell the adviser I would like to make a complaint and he refuses to give me his name. He then agrees that I can set up a repayment plan, some 45 minutes later and starts to go through the process. He then puts me on hold, returns and tells me the account has been closed and someone from the back room will contact me. He hangs up. I was so upset given that morning Slough Council was a similar experience and not to mention the fact that the landlord has not rectified issues in the flat and the list goes on.
The worst thing about this, is that it’s not over and I have to deal with this another day and at the moment I have no energy what so ever to deal with anything. So then come further upsets and challenges, all of which are a learning curve. Why does any type of learning have to be difficult or at least hard work?
I go away with my friend to the coast, her sister and their friends, none of whom I know very well. The chemo starts taking its toll on me and I am on the loo every time I eat. To add insult to injury food had to be specific and at the moment it was carbs and salty fatty food, specifically sausages and chips. I have eaten more chips in the last few months that I did in the last decade. What I discovered during this weekend away was my body was struggling with these chemicals which was having a knock-on effect on my ability to think clearly or have confidence in myself and therefore preventing me from being able to relay my needs to anyone.
I began to lose trust in myself my own confidence. Trust is a funny one. There must be many people like me who have to rebuild their trust in themselves and this is where supportive friends and family come in and mine have continually reminded me of who I am and to not be so hard on myself as I am going through Chemo, something I continually forget because I just want to get on with living. Friends and family have given me opportunities to reflect my own thoughts and feelings and perform checks and balances surrounding my own behaviour. So I have become very aware of what is happening to me both physically and mentally. This means I was able to take precautions very quickly when in July I felt utter despair. There was a sudden change in mood and I couldn’t understand where it had come from. Rather than work it out I got on to my GP and got myself on some anti-depressants. I carry on going to work 2 days a week but then the locum started on at me about my caseload and before I knew it I could feel this intense pressure building up in my head. I realised that I needed to go home and not be in this environment. So now I’m signed off sick again because the pressure at work was too much to manage.
After a few weeks I was due to return to work at the beginning of August and honestly, I was looking forward to it because now I had had one weekly session of Taxol and that was nothing like the red stuff. I could finally taste coffee again and food was tasting nice. My friend took me for a roast and you know what it was amazing, it was the most I had eaten in a long time. So just as things begin to pick up and I start feeling more like myself something happened to my back and my right leg. I went to bed Sunday night with an ache and by Monday morning I was crippled with pain in my back and leg. Most of the leg had gone numb and I was so worried due to the sudden onset. My friend drove over specially to take me to the doctors who wanted to speak to my oncologist and get me in for some scans. The reality being they were checking to see if the cancer had metastasised. I was then booked on for an MRI and xray and an appointment with the oncologist, who then arranged for me to be seen by the orthopaedic surgeon in the same day. Anyhow I have 2 protruding disks on the left and the right. The right one has hit the sciatic nerve which is affecting the sensation in my leg. So now I can’t sit or drive and I can’t get back to work. So the GP signs me off for another month. My Chemo was then delayed for a week because my white blood cells were low and I was given a ton more medication.
Then the weekly chemo’s continued, and I am due to have number 6 this week. So I now dislike coffee again and most food tastes off. I went to my favourite restaurant the other night feeling excited at the thought of eating this south Indian food I had not tasted for 4 years. Lone behold it all tasted bland and tasteless. I was so disappointed. My son told me though it was exactly as he had remembered so it was me. Great!!
Added to all of this mix has been the onset of menopause. I have had no periods since my third cycle of the EC and I have had to endure the onset of hot flushes for the past 4 weeks which means that I have been subjected to broken sleep every night since. Seriously! If you haven’t got enough to deal with lets add sleep deprivation to the list as well. My son said to me today that he did not think that I would respond to treatment as well as I have and funny enough my daughter told me the same thing last week. One of her friend’s mother is also going through a similar journey and her body has reacted negatively to the Chemo to the point she no longer wants to continue with the treatment. Despite having Chemo brain, being bald, hot flushes, lack of sleep, numb leg, I still feel fairly well mentally. Besides its not such a bad thing having to deal with everything in one go then hopefully there will be less to deal with at a later date or at least I hope there will be less. Just to clarify no one really prepares you for the menopause so at the for the last 4 weeks its been fleece on, fleece off all day long.
Let’s not forget the blood tests because for the past 3 weeks every time they go in to my vein no blood comes and the nurse jiggles the needle around a few times to hit the vein. Well last Thursday the nurse put the needle in, couldn’t find the vein so he jiggled it around a few times, eventually he hit the vein but the blood only filled one tub and then stopped flowing when he attached the second tube so then he takes the tube off and leaves the needle dangling while he gets another tube. Still no blood. So now he takes the needle out of my arm and puts a new one in. Again he does not hit a vein and has to jiggle the needle around again. Finally he hit the vein and the tube filled. Afterwards he says, are you ok’.
‘What do you think’, is what I wanted to say but there was no point because all I wanted to do was get out of the hospital. In case I haven’t explained previously they are not allowed to take blood from the right arm so they go in to the same vein in my left arm every week. Oh except for one week where she had to go in to my hand and made it ache the whole day. Sometimes I just want my body back and for everyone else to stop prodding it.
So my Friday started with acupuncture at 8.30, this is supposed to help with the hot flushes referred by the Oncologist before we try any other treatment. My insurance company have done nothing but argue with me about the fact they believe this to be a therapy and not a treatment and because I have used my therapies budget on physiotherapy they will not pay for more than 4 sessions. They are stipulating that acupuncture falls within the definition of therapy and not treatment. You see if it fell within the definition of treatment then I could have as many as I needed. The whole point of having private health insurance is to be able to access treatment for these issues that are occurring because of the cancer. So I need to look at the policy and challenge the definition. If acupuncture is a therapy then why is chemotherapy not a therapy. That’s because I believe it’s a treatment in the same way acupuncture for hot flushes is a treatment and if it works it avoids the need to take medication. If I can’t find a way to manage these symptoms I will not be able to function like a good capitalist citizen and earn a living.
I have more needles inserted in to my legs and feet this time. Ordinarily they are not supposed to hurt but a couple of them do hurt, and one hurt when she removed the needle. So it wouldn’t be surprising if I now developed a phobia of needles. I feel it though now, the anxiety build up every time I go for a blood test. After acupuncture I moved on to Chemo and then I left the hospital some 3 and half hours later to get to the Osteopath. Another therapy I have to pay for just so that I help my back get back to a healthy state.
Essentially, I am living in a state of limbo where I am completely powerless to all of these external forces that are impacting on my ability to have any control over my life what so ever. I tell myself most days all I can do is take control of the things I am able to, to try and help myself the best I can. 2 more months and this will be over!
When the chips are down
And Life knocks you to the ground
What do you do
Where do you turn.
When there is no more
No more to give
The body’s fucked off
And so is the head.
When the tubes have dried
And veins are empty
The muscles say no
They’ve given plenty.
When still you want more
And more you’ll take
Despite my tears,
Just give me a break.
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