It occurred to me listening to a discussion on LBC, about Danny Baker, that it seems like there is a real rise of extreme behaviours, almost as though we have forgotten how to treat people with respect. Not to say that Danny Baker’s comments were extreme, certainly stupid but extreme no and he paid the price. Then you have people like Lord Sugar who can get away with tweeting what is overtly racist and not sanctioned in any way. Politicians in recent local elections and per se are being verbally and physically abused, there’s a rise in anti-Semitic remarks, Nazi signs being painted, University students making rape threats, etc, etc…….. Not to mention protests over educating our next generations on LGBT rights. Then there’s a woman in the States who is having to pay for her own substitute at work whilst she goes through breast cancer and only recently Alabama has banned abortions!
I’m a bit concerned about the World I live in, especially having grown up with some form of prejudice. Up until recently I thought I lived in a progressive western society but now, not so much!
Is the World going backwards or what! History tells me that most Civil unrests in the World occurred as a result of inequality in society. If our governments and Judicial system continue to promote inequality, there will be a rise in extremism creating Civil unrest! But then what do I know!
I am now 10 weeks on from my DIEP surgery and I am doing well. I am officially in remission which is great. I have been swimming, cycling, Pilates, etc because I am on a mission to get fit and well, so that I can go travelling. It’s absolutely true that your perspective on life changes through this journey and for a little while I have decided to focus on my health and plan a journey of a different kind. I recently went to Venice and Croatia and realised my own limitations following all this treatment as well as how much I enjoyed travelling. Perhaps see for myself if the world really is doing a U turn. So, my next blog is about the limitations you face when traveling as a single woman whose body is weak from Chemo and having had major surgery some 12 weeks ago and what I have been doing to get fit. I have also signed up to do a 100km bike ride next year to raise money for Breast Cancer Care. Please sponsor me at https://www.justgiving.com/fundraising/harjit-gill
This is now the final leg of this long journey and all I can say, “We can rebuild her. We have the technology. We can make her better than she was before: better, stronger, faster.”
I’m not sure I’m stronger or faster but I have definitely been rebuilt in the words of the bionic woman!
On my way home, driving down a country lane, a warning light appeared on the car informing me that there was a malfunction with the steering wheel. I couldn’t believe it given the car had literally just come out of the garage after a MOT and service. It was also quite scary when the steering wheel refused to turn. So, I found the nearest layby and stopped the car, at which point everything died. I had 12% battery life on my telephone and could not remember for the life of me who I had recovery with. I knew I had renewed it whilst going through Chemo but could I remember the name, no. Not to mention the fact I was conscious not to drain the battery whilst searching for the details given I would have to call the company once I found their details! Fortunately, I found the details and called them but now I needed a toilet and you know how it is when you can’t distract yourself, well I had nothing to distract myself with. I even considered going in the layby but when I got out of the car it was too cold and exposed, that I couldn’t. Every car that went by me beeped because I had no hazards on as all of the electrics had died. So, I waited, and I waited, getting colder and colder. Recovery arrived at 11pm and it took the gentleman half an hour to load the car onto the truck. It was 1pm when I arrived home freezing cold. I then had to get myself down to the garage by 8am because I needed the car to collect the kids who were both travelling to me prior to the surgery. The car was fixed some £400 later, another expense I didn’t need especially with no income coming in. The day after I spent all day at the hospital undergoing various scans but whilst at hospital I was told I had to wait for a blood thinning injection prior to surgery which meant I overstayed the time on the pay and display ticket receiving a parking charge notice of £70. Again, would it not make more sense to pay on exit rather than a pay and display system in a hospital, granted most hospital appointments are rarely on time!
The surgery itself went well. I was closely monitored, every hour the first night and then every 2 hours the following night and then every 4 hours after that. I cannot praise the nursing staff on ward 11 at High Wycombe enough for their patience and support. The consultant and the nursing staff were all brilliant and I had all the dressings removed 2 days ago. I was now allowed to use stairs and have a bath. My daughter had come over for a week and helped with food and washing which was great but there’s nothing like being able to sit in a bath and washing yourself. There is also nothing like a good night’s sleep in a bed and not a sofa. So, the last 2 nights have been in bed and I have actually slept despite the fact I have to sleep on my back with my knees bent. I am a little more mobile but given my stomach has been cut from one end to the other it is going to take time before I can do anything normal given we use our core muscles for many things.
Overall, I do feel like I have been rebuilt over the years, what with metal plates in my jaw from when I broke it in Thailand, metal screws in my knee from a football injury and now a new breast from my own fat and finally a flat stomach and new belly button. What more could a woman of my age want! Anyhow, the battle continues both physically and mentally to deal with the everyday challenges and consequences of being diagnosed with breast cancer.
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!
So for about 2 out of these 3 weeks I have felt like I have had the flu. My bones ached and every nerve has been hypersensitive, from my toe nails right to the tips of my finger nails. My toe nails and finger nails ached so much that I did not want to go out as that would mean having to put on shoes. The minute I put shoes on my toes and toe nails throbbed. Every time I washed up or cooked and especially trying to peel plastic film off containers my finger nails throbbed. To the extent that wringing a cloth to clean was painful. 3 weeks on my nerve endings are still sensitive but nothing like it has been. Lets turn to the hair, well I have dark hair and so my hair on my arms and legs was dark. I had some white on my head but now that my hair is starting to grow back I look like John Snow, seriously that is not a good luck. I have more white hair on my head than before and the hair on my arms and legs is also white. I didn’t realise that Chemo could affect the pigmentation of my hair. On the plus side you can’t see the hair as much as before and believe you me that will save a lot of hair removal time!
Oh and then there are the eyes, I no longer have any eye lashes and my eyes constantly water and then the water stings the skin around the eyes drying it out. To the point I nearly hit a cyclist whilst driving in Bristol or a dark rainy night.
Then there’s the issue of food and taste buds which are still off and the upset tummy on numerous occasions but I know the end is near and all this should return to normal soon.
Finally the Chemo brain and just not being with it. Well what can I say, I survived the last 5 months without doing anything stupid or forgetful albeit I have had several near misses and if I was at work I definitely would have been negligent. However, the last couple of days have been busy and I was in Devon picking up some stuff, whilst down there I thought I would return stuff that belonged to my ex that she had not been able to take. This communication led to her sending me an e-mail. Anyhow me and my son stopped off at the service on the M4 on our return and as we sat down I received a call from Barclaycard about some transactions on my card. Apparently, someone had spent over 200 pounds on the card online, so they had to cancel the card due to the compromise. I then saw the e-mail and started reading it, whilst reading this upsetting e-mail, phone in hand we left the service station. My son telling me to hurry up and to stop reading as he was eager to get home. We arrive home an hour later only to discover that I had left my handbag at the services. I was so annoyed with myself and the only thing that concerned me was my Chemo card and a pair of earrings my daughter had bought for me. My son immediately rang the service station, explained the situation only to be informed that they had not recovered a red handbag. He even insisted they look again at the table where we were seated. The purse contained my drivers license, which I needed to hire a van to move my son’s things at the weekend. Obviously when I told him that he was not best pleased and started on at me albeit he made me realise that I had to cancel my cards quickly as someone could spend quite a bit through the contactless facility. Anyhow, once he started I disappeared to the bath for some respite. At that point I saw a message pop up from my reflexologist on Facebook, informing me that someone had contacted her in an attempt to locate me and that was because I had her card in my purse. She sent me the gentleman’s name and contact number who lone behold lived 40 minutes away and attempted to contact me urgently so that I would not have to cancel any of my cards. I really could not believe that this person had picked up my handbag and then made all this effort to contact me to return it. I then met his wife today and she invited me in for a cuppa and I spent an hour chatting to this lovely lady. What a lovely couple and it is people like this who restore my faith in humanity.
You could reasonably assume that given I was ill, perhaps the year dragged a little, but it surprisingly didn’t and that’s probably because so much happened last year. Recap, I had a diagnosis of breast cancer, I had 2 operations, I underwent chemotherapy, as well as having my heart broken and treated badly by others. Work essentially has been the one stable and constant part of my life and all I wanted to do was go back to work and get my mind active as well as earn a living. The thing is you can’t make any plans or participate in social activities if you have no income. So, I am sure you can imagine that by Christmas I was feeling let down by numerous people who had led me to believe that I could rely on them. The whole rug had now been pulled out from underneath me and there was nothing I could do but topple over. As well as all this it’s only been 2 months since I finished Chemo. I am telling this story to whoever chooses to read this blog, not because I want anyone to feel sorry for me but a reminder to myself that it has been a challenging year to say the least, but it is history now and it’s time to take control and move forward.
The reality is this is an illness I had no control over and the whole purpose of our Equality Act is to ensure that people like me are treated fairly. A friend of mine reminded me of how many minority groups I represent which made me really giggle. I practically tick every box going, so now I’m disabled as well!
The hair has been growing back slowly however nobody warned me of the risk of going grey and I am now 70 % grey and this whole process is transforming who I physically used to look like. I am embracing the short grey hair and you know if I’d not had cancer I would not have realised how much short hair suits me. Silver linings hey! My muscles still hurt some days if I have walked and my toes still hurt but the fog in my brain is clearing and I can see things more clearly now.
The next stage of treatment involves further surgery. I met with the consultant who would potentially perform my DIEP surgery, another lovely man, kind and calm. Listened to my concerns and was honest with me about the whole process. So what is a DIEP?
A DIEP flap is a type of breast reconstruction in which blood vessels called deep inferior epigastric perforators (DIEP), as well as the skin and fat connected to them, are removed from the lower abdomen and transferred to the chest to reconstruct a breast after mastectomy without the sacrifice of any of the abdominal muscles.
Thanks to Wikipedia.
I opted for a Diep flap because I felt it was the right option for me and I really didn’t want an implant. Had I had a double mastectomy, I may have gone for implants for the sake of symmetry which I can only achieve with my own tissue in my case. I felt quite anxious that the surgeon who operated on me last year did not perform Diep surgery.
So I was relieved, that I liked this consultant and felt relatively safe. He explained the procedure and made notes to ensure I remembered the important factors and here is one of those.
The consultant informs me that I will have a completely flat stomach, I couldn’t believe it! Of course, he does also tell me that it’s a big operation, 5-6 hours long, I will struggle to walk for 2 weeks and that I will be hospital for at least 5 days and that the first 48 hours is critical and I will be in a lot of discomfort. Recovery time is at least 3-4 months before I feel like myself. But all I can remember when I get in to my car is I’m going to have a flat stomach. Another silver lining!
I laugh and focus on the positives whilst I pack boxes and begin another part of this journey and hope that it won’t be as bumpy as the last. A friend of mine reminded me that last year was about survival whereas this year is about thriving. My landlords is being extremely supportive and I will be moving in, shortly with my best friend. He has been a true friend. Be kind to one another.
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.
Today I had my last Chemo. I really can’t believe it! I’m absolutely ecstatic! I’ve been on such a high this week that I thought I would reach out to a friend and say hey life is too short for grudges and move on pleasantly. Can you believe she fixated on something that happened 4 weeks ago when we parted company than the simple fact that its my last Chemo tomorrow and this is someone who supposed to care about me! Seriously is that too much to expect from a friend! I don’t know, but please do tell me. Not to mention the fact the 2 people I have given more too than anyone else did not even acknowledge today. It still surprises me at how some people in this world are so self-absorbed that they cannot see beyond themselves. My daughter says that there are 2 types of people in this world, drains and radiators and I have decided that I no longer wish to be around people who drain me because they are thoughtless individuals. Disappointed is the word, to say the least! Don’t get me wrong, albeit I feel let down, I am also thankful to all my friends, family, BMI staff and all the other individuals I have met throughout this journey and especially to both my son and daughter and work. I received some beautiful messages and flowers from people who genuinely care. Its so true, you do find out who your true friends are when the going gets tough.
Anyhow I’m in such a good mood and have been all week that nothing can affect it. Having said that physically this week has been the worse. I felt extremely poorly physically last week, like I had the flu. Every little part of me aches, right down to my fingertips. I don’t want to go out because I don’t want to put shoes on as they hurt my toes. I have a red lump on my back that hurts and is possibly infected, so must remember to mention it tomorrow. One of my toe nails is coming off and the other just throbs all the time if any pressure is applied.
The nerves in the right foot are still not normal after the episode with my back, so that foot feels strange all the time anyway. I know this week will be taxing and I will be having the port removed next week so just a little bit longer and I will start to mend physically.
The end is near, and I am hoping to go away in November for a few days and I really can’t wait to be free from these chains and live.
The journey is not over though, I will be having another operation in 3 month’s time but nothing compares to Chemo so that should be manageable.
It has been a long journey and a useful and enlightening interlude to life.
Number 9 done today. 3 more weeks and no more Chemo. God this has been one hell of a journey, a rollercoaster of emotions at both extremes. I have felt both sorrow and love like never before and those are good things because at least I can feel these emotions, so I tell myself. Hey I have to make myself feel better!
So, my acupuncture and the needles going in to the port really hurt last week, to the point that my eyes welled up and the nurse commented on it being the first time she had seen me cry. That’s how painful it was! When the acupuncture needles went in, oh boy 2 of them really hurt and then this morning. It was an extreme f…ing moment where the needle reverberated one of my nerves and the therapist had to take the needle out. This means the anxiety kicks in because now you expect one of the next needles, she inserts, to set off another nerve. I wait in anticipation as the anxiety begins to build. Now then, I say to myself, where is that rational side, rational, pational, I say just deal with the emotions, she is telling you that it is unlikely to happen so trust the professional. In the meantime my son is trying to distract me by playing the trailer to the latest season of dare devil. It’s a marvel series on Netflix and yes I am sad but it keeps me entertained. In fact I have learned more about the marvel universe this year than anything else, thanks son!
Yesterday when I went in for my bloods. The nurse, who has now taken my bloods for the last 3 weeks and has been great. Alison, cleans the inside of my elbow, places the rubber band around my arm as I make a fist, sitting in a blue chair, in a clinical room with a desk on the right. We talk about giving up smoking, she’s been vaping. I tell I have one and will get it out. She inserts the needle into my arm, just after she tells there is going to be a sharp scratch. No blood comes, oh not again, I think, please don’t let that happen again. She jiggles the needle a little bit but nothing happens. Then she pushes on the needle and all of a sudden I hear a pop, sorry guys if that is too much detail, but something popped and blood came rushing out.
I could tell she wasn’t comfortable doing that and later said she felt the vain was pushing against the needle and albeit not experienced this with me, she had experienced it with other patients undergoing Chemo. She informed me that one of the side effects of Chemo can be the veins become thicker and that would also explain why I had felt in a lot more pain last week also.
Who knows! Was it because of the Chemo or was it because I had a particularly stressful week and the hot flushes had returned to normal and were coming thick and fast night, so I had been sleep deprived. The acupuncturist believed my nerves were extra sensitive because of the additional stress in life.
So I decided to look in to what happens when your body is under considerable stress, like mine. Well our brain releases a chemical called cortisol and by the way this is only own interpretation of the chemical reactions that go on in the body, and even that derived itself from google. Sometimes I think our younger generations will be clones of google. Anyhow the body goes into a fight or flight response when the brain perceives danger, during this time the brain releases a chemical called cortisol and one of the side effects of having huge amounts of cortisol in your body is that your body starts to fight itself and you develop auto immune responses. So I developed these little lumps over my fingers which became quite inflamed last week. Another thing I learned was that cortisol can have deleterious effects on the immune system and thus delays the body healing itself. All of this is interesting and it sort of explains why we as humans develop individual responses to coping with stress.
That is in no way to say that I’m not feeling sorry for myself, I feel incredibly let down by some people, yet others have extended warmth during this particularly difficult period. One of my friends described it as being a mole burrowing in a dark tunnel and not being able to see any light but eventually the burrowing becomes tiresome and you just want to give up. Even returning to work is extremely appealing at this moment despite it being extremely stressful. So what does that say about me! Well I know it tells me that this journey was really long and there is nothing I want more than to return to my normal life. I have now seen the Oncologist for the last time, unless I develop any unusual symptoms in the last 3 weeks of Chemo and that is definitely something worth celebrating!
The last 3 weeks and weekend have been like this, despite trying to get clarification on things and trying to resolve issues, I realised that I can’t do this alone and if people are not willing to meet me half way, then what am I doing, just banging my head against a brick wall. So the definition of insanity comes to mind, ‘doing the same thing over and over again but expecting a different outcome’. This had to stop, I no longer want to do the same thing over and over so I took some control. There are some situations in life which you cannot change because others are unwilling to compromise and without compromise no 2 people can build a relationship of any sort. future.
One of the first steps of the 12 step program is admitting that we are powerless over alcohol and out lives had become unmanageable. I realised whilst attending Al Anon that you could apply this step to any situation in life and that is exactly what I did with the cancer and any other situation that has occurred since. The acceptance of being powerless allowed me to accept that I have no control over what is happening and therefore I am powerless. Being powerless, to me, meant that I am not in control of what is happening to me but what I can control is how I deal with the situation because I am in control of what I eat, what help I access and how I manage my own emotions and I am learning everyday about myself and who I have become during this journey.
Some of the things I have learned about myself through this journey is that I am actually important. As an Asian woman of my generation I was brought up to focus on everybody else except myself, to put my fathers and mothers needs first, to put my brothers needs first, to put the family first, to put my husband’s needs first and then as a mother to put my children’s needs before my own. Now I am putting my own needs first, not by being selfish but being assertive and looking after myself. So on that note I highly recommend acupuncture to anyone who is going through the menopause. I have now had 3 sessions where needles are inserted into pressure points on m y feet and legs and albeit I am still having hot flushes they are much calmer than they were originally and less frequent. The other therapy I would highly recommend is reflexology, not only is it extremely relaxing but it’s also extremely therapeutic. If you live in London or the surrounding counties and you have breast cancer you can access these therapies at the Breast Cancer Haven. The clinic is a charitable organisation and an excellent resource for anyone suffering with this condition and you can find more information about the clinic in the following article that was written by my friend who attended the induction with me and on their website. https://www.linkedin.com/pulse/breast-cancer-haven-all-helen-moss-black?lipi=urn%3Ali%3Apage%3Ad_flagship3_inshare%3BRNjOHqJkR%2Fip6jt%2BS1sVyQ%3D%3D
Yesterday I witnessed 2 young women having a disagreement over an issue. One of those was my daughter and I was so impressed how the 2 of them resolved the issue by talking about how each of them made one another feel. To communicate with another about how you feel, the other party (whoever they may be) should be receptive to listening to your feelings before they get angry at you for being upset. When someone gets angry at you because you have raised an issue that has upset you, it’s because you have challenged their decision-making process. Some of us can see the challenge, recognise it for what it is and respond accordingly there and then. That way issues are discussed instantly and resolved. Others get angry instantly as they feel threatened, powerless or frustrated, so they are less likely to hear what is being said, words are then misconstrued and issues escalate. The discussion between these 2 young women was normal and healthy, they both had a voice and a right to air their grievances.
I have spent a large part of my life not raising concerns with people because my norm was culturally different from what I deem as normal today. I grew up in a culture where I didn’t have a voice and wasn’t supposed to have a voice. I found that when I eventually developed the courage to raise something or do something that someone else did not like or want to hear the repercussions were quite severe. For example, if I stood up to my family they would stop talking to both me and my children and therefore I have not seen them in over 10 years. Today I try to air my concerns regardless of the repercussions and sometimes that means saying things that people may not want to hear because the one thing we all have is a voice and a right to exercise that voice. My only rule is that I try and do it in a calm and constructive manner even if I’m really upset and angry. It doesn’t always work with the children though but my son recently reminded me that having just had surgery and diagnosed with breast cancer I have an absolute right to get angry and if others don’t like it, it’s actually their problem.
In the last 5 week’s my friend raised several concerns with me about comments I had made or something I had said, I listened and took on board that she didn’t like what I was saying because of her own insecurities or because I made her feel a particular way. My part was to respect her feelings and listen to her because at that time is was about her and not me. To me that is normal especially when you are getting to know someone but I struggle to understand why she didn’t give me the same respect when I told her I felt let down. It was still not about me but about how I had made her feel by raising my concerns. I had insulted her!
Today I reflect on what has happened and asked this person to meet before I go into surgery on Tuesday so we could may be talk about what had happened. Of course, this would make me feel better before surgery (but then it’s not about me) because the whole situation has upset me considerably and some closure would certainly make me feel better since it has been almost a week. However, she is spending her weekend with family and is not available. She recognised that I would be busy on Tuesday due to the surgery but suggested she come and see me on Wednesday. Given that I would be in hospital overnight and just having had surgery not ideal! So again, another issue in my life that will have to remain unresolved for at least a few weeks until I am able to drive and meet her.
It’s now been 2 days since I had my first session of Chemotherapy and it is 5.30 Sunday morning and I really want a glass of orange juice but I don’t buy juices so there is none, oh well. So, let’s talk about the procedure, my son and I turn up about 9.15 in the morning to the unit and it is very quiet except for the nurses on duty that morning. The lovely Charmaine explains what she is going to do and gives me an anti-sickness tablet to start with. She is from Trinidad and I tell her my best friend is from Trinidad also, who she hopes to meet at some point during this process. About 40 minutes later Charmaine returns with a bag of more anti-sickness drugs, she then inserts a needle into the port and attaches the bag to the drip. Once this has finished she returns and injects the port with 3 huge syringes of red liquid and then a saline solution to clean the port. Whilst she is doing this my body starts to feel cold and suddenly, I’m really hungry. Fortunately, there are biscuits and my son assists. I then send him off to get his hair cut as my treatment is finished and I feel very tired suddenly. I know I fell asleep for about 15-20 minutes as the lunch lady woke me up when she bought my soup. I was pleased to see food and ate everything because I was so ravenous. I then had a physio appointment which wasn’t the greatest idea because all I really wanted to do was go to sleep. After Physio, I didn’t feel too bad so my son and I went shopping, I was pre-empting feeling poorly and hadn’t been able to go shopping earlier in the week. By the time we got to the checkout I was getting techy with my son and he asked me to stop speaking to him like that. I realised that it wasn’t fair on him and I was embarrassing him in front of other people. I apologised to him in the car and got us home.
My friend came round with dinner, a beef stew made out of bone marrow, which took some preparation and patience because I watched her do it earlier in the week. Her aim was to get some real goodness into me even if I didn’t eat a great deal. I made some suet from the beef dripping that came off the bones and we put a suet crust on the stew. The dinner was delicious but by the time it came to eating, I was feeling really sick and only managed a small amount. I was feeling like I was pregnant again with my son, which I didn’t think would ever happen again, it was bad enough the first time. I couldn’t eat a great deal because I just wanted to throw up and then my body went into some sort of shock and I was really cold. All evening I felt very sick and very cold.
The following morning, I ate half a piece of toast with a cup of tea. I didn’t like the taste of the tea, I didn’t want coffee which is what I normally have because of the smell so it was water. I had a lovely morning in Windsor and we went on the rowing boats and got some fresh air even though I felt queasy most of the morning. The hospital had given me a choice of whether I wanted to come in the following day and they administer an injection or whether I wanted to do it myself. I opted for the second option so I gave myself the injection into my stomach. The injection would help my body produce white blood cells from my bone marrow which would subsequently make my bones ache.
So as well as feeling sick my legs ached most of Sunday and I was so frustrated with myself again for not being able to do the things I would ordinarily do without thinking. During these few days I noticed that when I slept I was sweating more and my clothes smelt, the sheets smelt, so clothes needed to be washed and the flat needed cleaning, but my legs ached so much that everything was done at a snail’s pace. As well as all this I have managed to mess up my medications by not taking them at the right time, but I know they are anti-sickness drugs so I’m hoping they haven’t caused me to much disruption. I will report it though to the oncologist in any event.
I have also discovered that 3 days on, I love the taste of salad cream and I don’t like anything sweet, any smells of any sort except fresh air and fortunately the weather is beautiful and I can thoroughly enjoy fresh air. Albeit, I am fed up of my body not feeling my own, not to mention the breast having strange sensations over the last few days as though something is moving around in it, I keep telling myself, one down and that’s it. I’m not going to count how many are left because there is no point in reminding myself of how long this journey really is. I’m doing today and today alone and even though I have had tearful moments over the last couple of days, I also have moments like now where the grass has been freshly cut and the smell of fresh air fills my lungs whilst I sit and look out on fields blooming with nature, reminding me that the cycle of life continues regardless.