I think it is safe to say that the last month or so have been one of the toughest for me so far. I have rrqlised hiw lucky i have been not to have much ‘cancer related pain’ so far.
Yes the cancer seems to have gone to other places. But at the same time something tells me that my bidy is in a better place now to recieve and accept the chemo treatment. (Started again after 2 months off).
My mental and spiritual strength wavered. It is back though. We take one step towards God and surely he takes a thousand towards us. (That one step is often soooooo hard though!)
So i got jaundice a few weeks ago. The affected cancer lymph nodes pressed on the bile ducts and blocked the liver. I can only express the pain as childbirthh contractions but worse. At keast during contractions there are intervals. This was excruciating constant pain! I got admitted to hospital and the drugs helped a little. The morphine has been good too lol!! Anyway..liver unblocked and now onwards and upwards Inshallah (god willing).
I have been totally out of it. Asleep most of the time. Today is a good day! I have another day and then chemo again. But i’ve got this. We’ve got this!!
So they have spotted some new areas in the lungs this time which they think are most likely cancer. Having more tests to confirm this before we plan the next steps of treatment. I have a lung biopsy next week which is obviously something completely new to me. I am anxious. Apparently it is not a big procedure but just the idea of something going down my throat into the lungs and then they take a sample. Doesn’t really sound very inviting to me! They said i will be slightly sedated but not put to sleep. Really want it to be over with.
It makes me realise again that life has to be about enjoying the ride as opposed to waiting for this or that to happen first before we can enjoy it!
My colon is also not happy at all over the last month. Constant pain plus a very uncomfortable feeling after eating anything! I have been eating really healthy as well. Seeing my colon surgeon in a few weeks ( who removed the original tumour in 2019) to have a little moan. I didn’t want to contact him because i know he will probably ask to do more tests. But i have to be a big girl and know it is the right thing to do.
My energy levels are still quite low so i make sure i use it very wisely whenever i do get any outbursts of it! I have downloaded a Meditation app which has made it easier for me. I have also started doing fitness to strengthen my body. In preparation for whatever the future holds.
The colours; 🏳️🌈 the beautiful sun 🌞 🏳️🌈 my daughter is home for the summer now💕 🏳️🌈 at least another week without treatment 🏳️🌈 the selfless people in my life who do whatever they can to make my life easier without me even asking!
So people often ask me what they can do for their loved one who has been diagnosed with cancer. This question comes up a lot because everyone wants to help. My advice is that if they are open to talking, then just ask them what they need. If they are too busy or not comfortable with that then think of things that you may be doing anyway and can do for them as well to ease their everyday stress. If they do not respond to that then give them the space they probably need. Reassuring them that you will be there for them whenever they need you.
Some suggestions of what you can do:
💝 tell her what days you are free and can maybe drive her (or accompany her) to hospital appointments or can go to her place and make her breakfast.
💝 if she would like it, be available to go to her place and take her for a walk or just a chat (maybe in the garden as she may feel uneasy about meeting indoors, especially if her immunity is low).
💝 if your child is in the same school or same age, offer to take their child for a playdate, park or help out with the school run. Maybe offer to do a regular day a week.
💝 ask her what school uniform her child needs and order for her. Even regular clothes. Shoes. With september coming up, everyone will need something.
💝 Send packed lunch for her little one after asking exactly what they like.
💝 find out what foods the family like and send. Don’t just send it…tell her exactly what day and what food so she knows and can plan accordingly.
💝 grocery shop. Say you are going to pass her house anyway so what can you get for her.
💝 send a little gift to make her smile.
💝 regularly tell her that you are there to talk whatever time. And genuinely be there. Sometimes she may just need you to be there with her. Just to get her through the day. Some days can be really hard but seeing someone you love can make such a difference!
💝 if you feel that she just needs space then give her that. She is working on getting herself better and will let you know when she is ready. Do send her a message regularly to remind her that you are still there. If she doesn’t respond. Give her time. Tell her that you are sending positivity, prayers and love from afar.
But make sure whatever you do is actually helpful for her situation as everybody’s circumstances are different. Make it straight forward and not a big deal. Otherwise you may be adding to her stresses.
It is really difficult for anyone to accept help so don’t force it. If you do help out then make sure you are doing it whole heartedly because you want to and because they want you to. Not because you feel that you should.
Remember that they are still a regular person, just having to take a slightly different route through this part of life.
Obviously, the same applies to a male friend. I have just referred to them as ‘her’ because that’s what i am lol!!🤩 Thank you everyone vecause these ideas come from you! Each one of you has helped me get through those good and bad days. Love you lots.
I hope this helps and thanks for being patient as i know i said i would share ideas quite a while ago.
I have been having the best time over the last few weeks during my time off from chemo! Getting stronger by the day and trying not to think about doctors and treatment! Been driving as well which is just so liberating!! But the time has arrived. I have spent last week having scans and tests to see what has happened inside while i have been on this break. Possible outcomes could be no change, which would be good. Lymph nodes could have got bigger or maybe it’s all gone!! (Very unlikely but i believe in miracles!).
I am so grateful for these last few weeks. The sunshine has also really helped and made it even more perfect. Especially all the rainbows! I am sad that it is over and also anxious about the next steps.
Waiting for scan results…scanxiety alert!
I trust that God knows best. Will keep you posted.
It’s been 5 weeks since my last chemo and i am feeling stronger by the day Alhamdulillah! The heart tests came clear and nothing to worry about. Yesterday i had a pain free day (abdomen and back were hurting before) after a long time and it was fab! Went for a really good walk and felt the ‘normallest’ i have in a long time!
Looking forward to more days like this but am also keeping in mind that there will be news soon on the treatment plan and i could be starting it soon! No news yet but i just know from the past that it can start almost immediately. Therefore, i need to make the most of these good days!
🏳️🌈 Meehoo the kitten 🏳️🌈 the sun! 🏳️🌈 family and friends 🏳️🌈 being able to see God’s signs all around me.
I have not written for a while as i was trying to get my head around a lot of things. Chemo round 3 of the new medicine was initially postponed twice due to low immunity. Which was unusual as this never happened with the first round of chemo (called Folfox for those who know). During this delay i was sent to have scans to check that there was no other reasons for my breathing issues and left side pain/cramping.
Luckily during these scans they happened to check on the affected lymph nodes and noticed that they had actually got larger. So we have stopped the chemo for now as it is clearly not working. New bloods have been sent off to try and find a new treatment that would work for me.
I was disheartened. Yes. This chemo has been really tough for me and i kept saying that it must be working and killing off all the cancer cells as well as the good ones. I reassured myself with this when i was having really bad days. So to find out it hasn’t done anything. In fact, things have got worse, was a shock.
Good news is that there are no new growths Alhamdulillah (praise be to God). Oh and i get the Holy Month of Ramadhan without chemo so can hopefully partake more. Muslims fast (no food and drink) during daylight hours everyday for the month. We are to refrain from negative thoughts/actions. A time to reflect. Are we happy with ourselves? What can we change to become better human beings? Do good to others and get closer to the Almighty. As a muslim, this is a really special time for us to spiritually update ourselves!
As my health is compromised, i am not expected to fast. I miss it. I have always loved fasting as it gives the digestive system a break and most of the time i actually had more energy. Anyway, i look forward to spending more time speaking to God and starting new good habits. I have given up all unhealthy snacks! I love the atmosphere at home during this time as we spend much more time together as a family. I love our discussions at the dining table. My goal, starting from this month, is to meditate for 10 mins every day.
Got some more tests for the heart today. The Last 2 weeks i have been in so much pain around the abdomen and back. No idea why! Hoping that it subsides so that i can fully enjoy my time off until the next treatment. Hoping for some good news soon for treatment options🤲
The colours: 🏳️🌈 no chemo during Ramadhan! 🏳️🌈 time for my body to recuperate 🏳️🌈 the sun is shining. Warmer days are coming! 🏳️🌈 we are getting the garden done and it is looking more beautiful by the day!
The last week has been great! I have been able to breath properly again! (Almost) And the pain/cramping has gone completely! The sun has really helped with uplifting everything!
I have had lots of tests and scans in the last few days too (to eliminate any other causes of the fast heart palputations). In between these appointments, managed to soak in the sun and am finding a new love for nature. On Tuesday, i enticed Nicola into having our consultation outdoors lol. I was sitting outside on the steps and in my own world and she came and joined me. It was all so perfect! Well…i guess probably not the best things to be discussing but much better than the hospital room! Had planned to go to that field with the beautiful ‘gurukal/harry potter building’. But we got carried away with doing more tests on me instead! Went home and had dinner outside. The sun and we all played uno!! 🔆☀️☀️
Yesterday, i was fasting for my scan and after that me and DH went to Regents park and ate the best pizza! Sat on the grass in front of the lake. It was just so beautiful. The weather was perfect and the company of course😍.
Got a cardiologist appointment today as well.
I have been doing this walking challenge with @Stanmore jafferies throughout March and yesterday was the last day. What better place to do my 2k walk. The inner circle! I have spotted a meditation garden there. Got my eye on it for next time! And walking around that circle made want to ride a bike…i loved bike riding as a child and can’t resist grabbing the kids bikes and going around the block every now and then!
Due to my moan on the last post, forgot to mention some important things. Yes, i was really struggling last week. I think probably more mentally and spiritually. This then heightened the physical side effects. I feel. I was not connecting very well. Those days where you just pray as a routine but without much feeling. I don’t know why this happens sometimes but it does. It is sad as it is these days where you need to hold on to faith the most. When you need to connect with the almight. Anyway, i couldnt see any positives at times. Thankfully, it didnt last that long but just something that i really didn’t like the feeling of. I love finding the colours! I love seeing the signs that the almighty always sends. This week it is just so much easier to see them 😍.
Oh also, while i was having the chemo infusion on Monday, i was feeling so exhausted and was trying to get myself out of the hospital.Treatment was done. The nurse had gone. I just didn’t have the energy to get up. (Can’t wait until i can have DH come in with me again). A familiar face who works at the hospital happened to be walking past my room. This cannot be cooncidence. This is the guidance and helps he sends us. Even at a time when i was ‘in a mood’ with him you could say. She just got me talking and out of there. God always sends help. I didn’t think anything of it at the time. I am only acknowledging it now. A week later when i have thought about that day.My Angel for that moment. 🤲
In the same way i have been sent so many angels to help me when i need it the most. You know who you are. I really couldn’t do this without that support. I have always heard that money can’t buy love. I now know the true meaning if that. It is that love from everyone that helps me through the more difficult days. That same love is what makes me absolutely love those better days!! 💕
The colours: 🏳️🌈 love💙 🏳️🌈 loved ones🌹 🏳️🌈 the sun🌞 🏳️🌈 fresh air!🙏
Sending lots of love to you all. Praying that chemo next week is easier for me and that i stay strong. Apologies in advance if i have another moan though. 🙈
So so hard. This time. New meds are causing severe cramping on my left side. It got worse after i finished my 3 day treatment on wednesday. Surprisingly i was actually able to go for a slow walk on wednesday after having the chemo bottle removed. Last few days have not been good. Shortness of breath is scary and heart palputations so so fast. I am exhausted even though i am just sitting! And when i try to take slow breaths in, it hurts because of the cramps. So i can’t take a full breath. I am really feeling for thosw who have suffered from breathing issues, thinking of my dad who really struggled to breath in his last days. Also, those who have suffered from such symptoms recently due to covid19. It really is something that you cannot understand until you experience it. That feeling of not being able to take air in. Oxygen. Appreciate it. We cannot see it, yet we cannot take a breath without it. Almost like love. Can’t see it. Can’t actually fully live without it.
I couldn’t swallow properly until today. Even just drinking water made me gag! Today is a bit better. (Day 6 or Day 3 of treatment? Depending on whether we count day one from when the treatment stops or starts. I am a little confused about this atm so if anyone can advise!)
Need to get myself rehydrated today. Alhamdulillah (praise be to God) that i am now able to swallow without gagging. Let’s not even go into the swallowing of tablets🙈
I have also had flu like symptoms since wednesday. Completely normal side effect for this new Folfri chemo. Fever, shivering, sweating, headache, bodyache, weakness, lightheaded….Repeat!
As i look around, i pray that we can focus on the bigger picture. Love what we have. The people close to us. The things we are given. Maybe those we have never acknowledged. Those that are always there for us. Often we overlook. This life is so temporary. I am glad that i have been given a chance to take a back seat and look from afar. I pray that i can get my health back soon and enjoy the bigger things in this world which i may have not have even acknowledged before.
The colours; 🏳️🌈 those who have stayed by my side every single day. Be it through a message or a prayer from far. 🏳️🌈 those who make me smile and laugh. Even just for that moment. When i know they are hiding so much from me, to protect me from any negativity. 🏳️🌈 the sound of the children playing downstairs and enjoying the sun outside!
I have stayed away from writing because i was enjoying my week off from chemo💃 I was prepared for it and then had a call to say my White blood cells and Neutrophils were both too low to go ahead with treatment. I have to say, i was secretly relieved and excited about the week ahead! I can’t believe it is over so quickly! I still have 2 things on my list i wanted to get done. Returning some uniform(had ordered different sizes for the kids to try). Re-framing some photos. Will do them over the week. Meehoo the cat accidentally ruined my ‘Dumbo’ puzzle . I was distraught. As was she. On the positive side, i will have more time to do some other things. I am traumatised by it being destroyed so will stay away for a while🙈
I should get to sleep. Hoping tomorrow goes well and doesn’t take too much longer. We are adding some new drugs as i had a slight reaction last time. They will also be redoing bloods so that will add time to the whole process. The pain in my neck has gone completely and i can’t feel the lump unless i press gently. Hopefully the chemo was just doing it’s job when it was swollen after the last session.
The colours: 🏳️🌈 had a great week with increasing energy by the day! 🏳️🌈 movie weekend was perfect!! 🏳️🌈 no tingling in my hands and feet (periphal neuropathy) with this new chemo combination so i can actually do things like make myself a cup of tea/cook/pick things up! I used to struggle with basic things like this in the previous chemos and needed to wear gloves 🏳️🌈 days getting longer next sunday woo hoo🎉🎉🎉
Day 9 and i am feeling o mich better now..even went with hubby to pick up the kids from school. Oddly, it felt so normal. Like before. And mum called to pick up food on the way home. Just like she used to! Before my diagnosis. And before lockdown. When i was living the chaos! Well i guess we all were. But i got a headstart with the whole staying away from people to avoid catching anything etc…
Now i think back to how i was shielding before we had even heard of Covid19. I never quite understood why i shouldn’t be seeing people unnecessarily and if i did i shouldn’t be hugging, in case i catch something. I remember explaining this to loved ones and how it felt and sounded so weird and rude. Now it has become the ‘norm’ for the world. Is God doing this all just to help me fit in? That sounds really big headed lol!
Mother’s day is coming up…my mum has been my everything. My energy. My role model. She keeps me going each and every day and if i fall she gets me up. A mother”s love; unconditional. Limitless. I could go on and on.
I am lucky to have so many additional mother figures that God has given to me. Imagine the love and prayers that one gets. A mother’s prayers are so special. Sometimes we don’t see the love he gives us through others. Especially those who are always there. We get used to it and feel entitled. Let’s appreciate those beings that God has presented to us. They are not just there coincidently. They have been sent to us. It is upto us to notice (not just see) them and be thankful.
I always jump at the chance of having more people to call mum, dad, grandma and granddad. There is no limit! More parent figures… means more love and prayers. More people to serve. After all isn’t that what we are here to do? In this world. To serve? To love? To be kind?
Thinking back to when we used to have gatherings, i am that person who you will find hanging out with those quite a lot older than me or with the children! I have always felt that these are the two groups of people i benefit the most from and enjoy the company of. So much to learn from the experiences of the elders and so much to learn from the unbiased, fresh minds of children!
I just finished Jay Shetty’s book ‘Think like a monk’ In which he ended by disclosing our main pirpose in this world. To serve. When we serve others we are happy and fulfilled. In the natural world, everything has a purpose to serve. Trees protect fron the wind, keep the ground intact and provide shelter. We too are nature. We too are here to serve others. He questions: rich is the person who has money or the one who serves others?
It made me really think. How happy do we feel when we do something for someone else? Such a good feeling! Are we giving them something of ours? No. We are taking from nature and giving to nature. When we come across someone who we have the means to help, it is God presenting an opportunity for us to serve others with what he has given us. Will we take the opportunity and help that person or will we walk away. Are we entitled because we have and the other doesn’t? Are we morre deserving? Are we thinking that God will give it to him if he deserves it. It never belonged to us. Everything in this world is temporary. We come and leave with no material posessions. This house, family, car is all just borrowed while we are here.
The book goes on to explain how we can look for opportunities to help others in every part of our day. Whether it be through providing something physical that they need or even a smile or a kind message. He goes on to say something on the lines of.. Plant seeds for trees where you never intend to take shelter. I really haven’t done justice to summarising the book but i definitelt recommend it! It is really just a reminder of everything i knew. Things i have been brought up being taught by my parents and through talks at the mosque and sunday school. I hope to implement more!
Colours: 🏳️🌈 these 4/5 good days i have before the next chemo cycle. Feels so good to have energy! 🏳️🌈 family (i feel like i put this a lot…but it is such a big part of what gets me through each day!) 🏳️🌈 sunshine 🌞
My new moto for life: Love, serve and lift those around you💕
Reallystruggling with this new chemo. I dont know uf it isalso my mindset not being as strong recently. I havent managed to keep up with my yoga or read my book. Well at least i am able to sleep like a log. Thats why i am not writing much i guess. Dont feel fresh when i wake up and takes ages to gear myself to get outof bed! Predominant New side effects is a constant lump in my throat, gagging feeling for forst few days and stiff body especiallyneck and shoulders. Fatigue! Confusion started today..day 6. I had forgotten this feeling. Maybe i am just being a drama queen. I don’t know.
Sorry i may be exxagerating some of these but its hiw i feel right now. Hoping for a mentally, spiritually and physically stronger day. Going to miss the kids so much as they return to school. Managed to get myself out for a walk.yay!
The colours : 🏳️🌈 our new kitten ‘Meehoo’ 🏳️🌈 children’s school stories to look forward to 🏳️🌈 spring…i can see dafffodils!