2nd March–8th March
After a bit of an up and down week last week, my symptoms worsened significantly on Monday.
Week 9 in summary
This week was probably the most dramatic of my chemotherapy treatment.
It came on quickly and hit really hard, the cold symptoms turning into a barking cough and a tightening chest, which left me able to take only increasingly shallow breaths. It resulted in a trip to A&E and, as blood tests showed I was neutropenic, three days in isolation in hospital until my white blood cell count was up. I wasn’t aware that one in three people going through chemotherapy experience this! For this reason, I have tried to give you a detailed account. I was very resistant to the idea of going into hospital. But the medical staff were outstanding, and there are strict protocols for Chemotherapy patients. Even though A&E was jam packed with people, I was seen immediately and given a room to myself, before ending up in isolation.
But after all the hospital drama, there was some loveliness this week: after leaving hospital on Thursday, and a brief period of recovery at home, I JUST managed to be well enough for a trip to Cambridge and a Friday night away. It was a wonderful break from my sitting room four walls!
On a more personal note, and as I am reporting on all body changes, I have to divulge that my pubic hair has now gone! After my bath I looked down and noticed for the first time that it was very thin on the ground!! I have no idea if it was all at once or over time, I simply haven’t noticed that progression. I have a distinct feeling of loss; a reduction, as time goes on, to a bare minimum of femininity.
Happily, my eyebrows and eyelashes are still holding fast (phew!) although my upper lip hair and leg hair are still gripping on too (I was hoping that at least a tiny upside of all this hair loss would he fuzz free legs but alas, not to be!).
To make female matters worse, my menopausal night sweats are really full on. The oncologist said that the chemotherapy would speed up the menopause. I notice that another side effect (lifted straight from google) is ’detrimental pelvic floor health’! This is not a good combination with a bad chesty cough! In mid stride and pre cough I have to clamp my legs together in a leg twist manoeuvre to stop peeing myself!
However I have countered my feelings of loss this week with a passion for sowing and growing in my garden!
I am planning what to sow in the allotment and I now have raised beds in the garden which Mark built last year; salads and spinach throughout the year and I have visions of picking my own brussel sprouts on Christmas day! It feels like progress and is a ‘pottering’ project that is giving me so much pleasure. I just do little bits at a time when the sun is shining; a wonderful distraction!
All in all a very up and down week. Much like this cancer treatment generally, really: the lows are very low but at the same time there have been some incredible highs that I’m very grateful for!
Monday 2nd March
Week 9, Cycle 3
I spend the morning really looking after myself. I wake up drenched in sweat at 4.30am, but feel good for an early start to the day and prepare for a coffee enema. I have a delicious gift of a bath soak (Ceridwen’s Cauldron from lush) from Sophie and have a luxurious bathing morning.
My tongue is too sore to chew, so a banana and raw cacao smoothie, with all sorts of nutritions flourishes, sets me up for the day.
I have a breathing session for two and a half hours. I feel compelled to go deeper into my breathwork. It feels so very nourishing. I go into a dream state about my breath. As my chest is feeling so tight and vulnerable, it is easier to breathe in and out though my nose, rather than mouth. It really makes a difference to have a relaxed jaw and open mouth. I experiment, noting changes in volume and ease of breath.
At 12.30pm I ring the chemotherapy department for advice about my cold having turned into a cough. They suggest I go straight to my doctor for a blood test and check up, but since the clinic is closed and the emergency number tells me that there is no facility for testing blood today, I realise that A&E is the best way forward. I have a big plate of scrambled eggs and avocado to power me up for a trip to the hospital.
…I’m now writing this from a bed in a little room in A&E.
As promised, I’m giving you all the detail, of what turned out to be much more than just nipping in for a blood test.
Mark dropped me off at about 1.45pm. The waiting room was full, but I was told to sit in the empty reception area and, before my seat was warm, I was whisked into a special room and seen to immediately. I was told there is a particular protocol for chemotherapy patients and that they take a compromised immune system very seriously. I have already had my blood test taken and have a cannula in my lower arm, anticipating antibiotics.
Their concern was that I might be neutropenic, which is where you have an abnormally low count of neutrophils, a type of white blood cell that helps fight off infections. Thus it becomes very hard for your body to fight off an infection in the normal way.
2.30pm I am wheeled into my own little room. Now I have a drip in my arm and it is difficult to type! The nurse has just been in and was preparing to give me broad spectrum antibiotics. I asked if we could wait to see what the blood results were, and examine my chest to be more specific with any antibiotics because I’m really not keen on taking antibiotics. She said that if I was neutropenic we didn’t want to lose any time as even one hour (the time it takes to process the blood tests) can make a difference with a dangerously low white blood cell count. She looks right at me with beautiful big eyes and such concern and it is impossible to say no to the injection.
3pm I am told that my white blood cell count is very low. I am neutropenic and I will be in overnight. I am gutted. It is a sunny day I will be in a building till the sun goes down, and my sister is coming from the Isle of wight to stay tonight. I was anticipating being in for a couple of hours tops, then be back home.
I have not brought a book, I wanted to keep up with my blog so I pull out my lap-top again to keep my spirits up! I am getting good at typing with a drip now 🙂 I have something which I feel is important to share, around the idea of ‘needs and wants’ and I have a sense of urgency – the need to capture it before it evaporates. And although there are constant interruptions … I now have plenty of time!
3.10pm I am wheeled in to have a chest X-ray, past a whole group of ambulance paramedics with their stretchered cargo waiting to be allocated a place. It is very congested. I am feeling very blessed to be seen so quickly and have my own room (although as my daughter points out, a medical necessity rather than a frivolity, it does feel like a little piece of luxury!).
3.35 I have an ECG.
I am given a phone to call Mark. He is going to have to get an over night bag together for me too. He is in a tail spin at the thought.
My cough is starting to sound like a fog horn. Beautiful Big Eyes Nurse has brought me in 2 polystyrene cups of fresh water.
4.15 the tea trolly comes round. No herbal Tea 🙁
Now to my big share. I noticed yesterday morning a subtle but very definite shift in my spirit. I was in my bath and asking for guidance. I got an instant response in the form of the words ‘you take care of your needs’. It came with a frisson of relief and a realisation that it is true: I can and am taking care of my own needs. Even in the most dire circumstances, I feel that I am listening and understanding what I need. With that came a chink of light which promised an ‘aha moment’. I have time and a keen motivation to listen to exactly what it is that I need for myself: sunshine, good nourishing food that my stomach feels like at that moment, moving to my favourite music, (a quick hit, Green Onions!), cuddles with Mark and time with family and friends. All these needs are being met in spades (the sunshine is the most difficult need to be met right now!). And as a result I have found a level of peace and joy that I have rarely known. Even though I am going through one of the toughest challenges of my life, physically and emotionally, I am experiencing periods of deep joy.
This then leads me to mulling over the balance of ‘needs’ and ‘wants’ and how one affects the other. If I listen deeply to myself and the needs that I have, my wants don’t seem so important, OR have a hold over me. I feel a radiating joy from within. Life seems simpler. If I just focus on my wants I am found ‘literally’ wanting and it is uncomfortable.
4.40 The lights have just gone out. The drilling sound below my room that has been on / off probably the cause! I type by the light of the lap top!
My needs are very basic now: some light, a pee, some more water. Big Beautiful Eyes nurse, who I now learn is called Denise, has just popped in finding me in the dark. The door is now wedged open with the bin. I am supposed to be isolated but she doesn’t want me sitting in the dark. I am not allowed out of the room to the loo. The commode is coming! My needs are being met (joy!), though I have to pee in the semi dark with the door closed!!
I am finding my experience priceless!! I can see the whole A&E area from my bed, including the X-ray screen, and manage to see my full chest X-ray.
I suspect that if I manage to meet my own needs, then my wants are less important. They don’t have a grip on me. I have been sitting with this concept and mulling it over for a day now.
Ideas are bubbling to the surface. I ‘want’ our kitchen to be built and be ready soon but I don’t actually need that to happen and I am quite happy for the pace of construction to be in harmony and to unfold easily for Mark. No pressure!
Interestingly, reflecting on when my needs were not met, the walk in the sunshine, emotionally I had a huge outburst of anger!
I get given a phone and call mark with a list of basic needs! NOTE to anyone heading to A&E thinking they will be back out on the day. Pack an over night bag just in case! My wants are rather complex, though I really just need my coconut oil and a toothbrush!
Lactate measures the amount of suffering that my body is in. My Lactate score is 3.7 which is high. It measures the acid in the blood, which tells the story about the way my body is dealing with cell death, and the fall out from the chemotherapy and the suspected virus that is now causing a problem in my chest. I am so in the right place now!
10pm – Mark came in and brought some food. I am still in my little room with no assigned bed on a ward and not a sausage of a food trolly.
I am very ready to have a leg and arm stretch but rather constrained with tubes and a drip. I am tired having started the day at 4.30am, but bleeping monitors and the open door is not conducive to sleep.
I arrived in a fabulous room on the Cardiology ward just before midnight. The porters who trollyed me there were a great laugh. On the way I said, jokingly, that it just had to be a sea view room … and it was! In isolation, all to myself 🙂
My sister Lulu and Mark managed to bring in a last thermos of comforting hot chicory drink and some more supplies just after I arrived. They went above and beyond, so very caring. Despite being wired up to a drip I slept well!
Tuesday 3rd March Week 9
Week 9, Cycle 3
A day of bed rest and I decide today is a reading retreat. Laptop closed all day. Still connected to a drip, I can’t move around easily. I was given broad spectrum antibiotics and monitored hourly. The staff were lovely. In visiting hours, my sister Lulu brought homemade soup and lots of delicious nibbles. The hospital food is in an aluminium foil container and looks very unhappy and lifeless.
I love reading my book all day, great story, and I am nearly finished. I hardly make it to the window to see the sea!
Wednesday 4th March
Week 9, Cycle 3
I had a bad night. I was wiped for the morning. I couldn’t even read. I felt like I was really going down hill. My drip was taken out so at least I was free of that. I talked to the nurse and said I was concerned that the antibiotics has not made me better. My cough was getting worse. A coughing fit would leave me exhausted. The nurse told me that there was going to be no change in my medication until I saw a doctor which was not till the early afternoon.
Left to my own devices and in desperation I decided to try a urine pack. Thank goodness I had my flannel, which I peed on, and using one of the spare plastic bin bags over the top, I put it in place over my kidneys and flopped back into bed for a couple of hours of rest. I couldn’t do my breathwork as I could hardly breathe in, my inhale had to be really shallow otherwise it aggravated my chest.
After a couple of hours of feeling rather lifeless I removed the urine pack and made it to my bathroom to shower. I had the energy from somewhere, either the antibiotics eventually kicking in or the ‘biofeedback’ that, I am told, is the reason the urine therapy works. (I really need to research this therapy more!) I was very grateful to have both bases covered in my dire circumstances, the comfort of mainstream medicine and also what at first seemed to me to be a really crazy, wild and whacky alternative, but from experience, actually seemed to work too. Within an hour I was sitting up in bed and for the first time got the lap top out and started writing my blog. I was marvelling at how well I was feeling when the doctor and nurse came in to tell me my blood results were good and that I could go home! The nurse looked at me in disbelief, having seen me earlier, she was concerned that I had been so unwell in the morning, and had told the doctor I was not well enough to go. Here I was, bright and cheery saying ‘yes I feel well enough to go home’!
It took 2 hours to get my letter of discharge and everything lined up to leave.
A nurse helped me with all my bags to a pick up point and Mark whisked me back home 🙂 to more bed rest.
Thursday 5th March
Week 9, Cycle 3
I bobbed up (at home hurrah) early this morning with no clue what day of the week it was. Looking in the diary, a full day was planned! I cancelled everything and rested for the day, finished my book and started another.
Friday 6th March
Week 9, Cycle 3
I went to outpatients at the hospital at 10.30am for a blood test. As a chemotherapy patient I was whisked though the packed waiting room in 5 minutes. I had a meeting with an Oncologist at 11.30am, who had the white blood cell count results ready. It was a great service! When I was admitted to hospital on Monday my count was 0.6 and now it was up to 6 (7 being the top count). I had a very good reason for getting clear about my ability to fight infection:. I was due to go to a big family reunion in Cambridge today, where my mother was reading her poetry at an event. It was going to be a peach of a trip and one that I didn’t want to miss, but I didn’t want to risk my health for it either. The Oncologist said that the biggest challenge is the possible infection from bugs already inside the body, not from other people, and said it was safe to go.
We packed our bags and drove to Cambridge!
My mother got the only encore for her poetry at the Creative Cabaret at the Grad Pad. It was a highly stimulating evening especially after the isolation and 4 walls of a hospital room! My spirit was soaring and soul nourished by an epic family time.
Saturday 7th March
Week 9, Cycle 3
Breakfast with my 4 siblings and a reminiscing walk along the river Cam. We spent the afternoon at one of my favourite places: Kettles Yard, a house packed full of art treasures. There is a great case for the oasis of special time away from the ’surviving the cycle’ in the thick of the chemotherapy. I left Cambridge feeling lighter and brighter. I met a couple in chemotherapy who said they went away for a weekend to a different seaside town before each cycle started again. YES, it is good to escape the four walls!!
Sunday 8th March
Week9, Cycle 3
My day started at 4.30am with a change of clothes again! A last note about the menopause – My peri-menopause has been going strong for about 4 years. It started with 3 day headaches and hot flushes with the occasional night sweats. The herbalist tincture from Neals Yard stopped the headaches. SO for the last 4 years I have been used to my temperature fluctuations. But these recent night sweats have been in a different league! At nights I wear pyjama’s from wrists to ankles to soak up the sweat and last night I had to change my clothes twice. I go to bed with spare clean pyjamas at arms length from the bed for the night time ‘all change’! But last night, second time around, the bed was so damp I didn’t want to get back in it, hence the early morning start! REALLY, it is bad enough with the side effects of Chemotherapy. It is hard core to throw in the full menopause too!!
SO we have a quiet day taking it REALLY easy after our week of ups and downs and The Big Excursion to Cambridge.
We walked down to the beach and I picked up 3 bagfuls of seaweed to nourish my garden and allotment compost. Quite enough activity for the day.
Next week’s blog
I have a reprieve and put back the clearing date to have another week of recovery after the A&E experience. Much needed and big chunks of joy making the most of it!