Blog No 172 – Cancer Update.

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Hello everyone, 

Wow it’s been a while, My life seems to be consumed with medical issues and I didn’t want to bore you all with the in and outs.  It’s been over a year since my last PRRT treatment, which was executed in London   Therefore it’s time for a little update. 

I can’t believe I’ve reached yet another birthday in January. Something I certainly didn’t believe I would achieve, following my cancer diagnosis. Life has unquestionably changed dramatically since that very day I was informed that I had a rare cancer. There’s an undeniably truth in the saying, your life can change in an instance. No-one prepares you for the enormous life change that’s about to happen. Notwithstanding this, there’s no better feeling, than to wake up in the morning for another day of life. 

I’ve learned to be exquisite, to challenge, and to do my own research. Everyday is a school day and i continue to deal with ongoing symptoms. I do feel that following my treatment there has been some improvement in my symptoms but others have just escalated. 

Hearing loss, I can hear you say hearing loss, excuse the pun. I’m that 1% who lost my hearing through treatment. I should stress that it’s not complete hearing loss but considerable enough to warrant two hearing aids. I saw an Audiologist about 4 months after completion of treatment as I felt my hearing was deteriorating. My useful skill of listening to two conversations had gone. I got retested a couple of months ago and it was confirmed that my hearing had deteriorated further. According to the Audiologist, the treatment had killed the nerve endings in my ears. I have to say it’s good to be able to hear but I’m now very noise sensitive when I have the hearing aids in.

Flushing has beyond any doubt increased. looking like a strawberry at times can be quiet embarrassing. Let me stop you just there, this not menopause but a cancer symptom. The tumours in your body secrete serotonin causing your body to flush. I can glow with various symptoms and one of them is the feeling of pain. Someone said the other day, my body looks like a bad case of sunburn, he’s right. Furthermore it glows from head to toe and can happen numerous times throughout an hour.

Lumps. After treatment, I developed a lump on my forearm. The lump appeared from nowhere, for this reason my GP and I decided to play a game of watch and see.  Obviously it wasn’t joint related as the lump was in the middle of my forearm, it was under the skin, hard to feel and pain-free. As the lump appeared to continue to grow, the next course of action was an appointment with a Dermatologist for a biopsy. The lump was biopsied and turned out to be benign tumour but was very rare. I appeared to be a woman of rare health issues.

At the time of the biopsy I was asked if I had any other lumps and my reply was no. As the lump was not bothering me, no further action was required at this time.  

Subsequently a couple of months later my GP had to request another biopsy on behalf of my Oncologist in London.  At the time of writing this, there is an additional 3 lumps, we are maybe up to 4 now. I see the Dermatologist mid March.  I believe it to be the same rare benign tumours but I will have to wait and see. Surely there is a reason for these little devils appearing, maybe it’s due to my recent cancer treatment.  

Pain. I have pain in a couple locations both the spine and chest area.  The spine, I have sciatica in both legs down to my toes.  The Spine Specialist was meant to do spine injections a few months ago but I haven’t called him to arrange a treatment day.  He’s clearly chasing me, as I have a telephone consultation in the next couple of weeks.  

I will give you my reasons, I’ve have a lot going on and I’m trying to resolve those issues before going forward with another treatment. Besides, it doesn’t necessarily work, therefore I endured pain to have more pain. I don’t see the point of going again and again for something that doesn’t necessarily work and my GP agrees. This is a discussion I need to have with my Spine Consultant. I will get a second opinion by getting a private scan and have a discussion with my GP to take the appropriate action.

Additional pain is in the tumours in peritoneal membrane near the liver.  This is on another level of the Richter scale.  The Chronic Pain Consultant discussed the injections on the request of Oncology Consultant & my GP.  The approach was injections but when discussing it with the Consultant on my birthday if all days. I would  try the increase in morphine first and if I have issues, we would do the injections into the peritoneal immediately. I did inform her that it’s worth giving it a try but previously I haven’t tolerated too much morphine. I’m able to tolerate my usual morphine when sleeping and top ups of liquid when required, however increasing the tablets cause’s me too many problems to name. How do you find the balance?, it’s either suffering pain and have some normality to my day or for taking the edge of pain and zero quality of life. I had the injections yesterday and I will have my lower pelvic area done in April when the consultant returns after a month leave  

Endocrinologist. I have a lovely Consultant who monitors my thyroid, this is another issue brought on by the cancer. On the positive note my thyroid is managed well under his care. However he didn’t like some of my recent blood results and have requested I do further immediate blood tests, which I’ve done yesterday. Let’s see what happens there.

Other symptoms – You don’t need to hear the in’s  and outs of everything, nevertheless it can be challenging at times 

Novembers Oncology Scans – Suggest that I’m stable but my body is suggesting otherwise. I have tumours in the peritoneal, lower pelvic area, liver and lungs and wherever else the sneaky devils have put their head down. I feel there is even some reoccurrence to previous organs.

Although I’m challenged on a daily basis, I’m on this earth living a life many others don’t. Sometimes we feel things are done due to fate, which are either a lesson or blessing This situation is maybe a lesson it’s definitely not a blessing.

On the good days I’m still making art with recycled postage stamps. Check out my Etsy shop, Facebook, Instagram, Pinterest and Twitter   “Postage Stamp Artistry”  

Love to you all. ❤️

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Blog No 166 – Overview of 2020

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Happy New Everyone

Family & Friends

Thank you to friends and family for your continuous support. I have a huge amount of respect for people that consistently care and support Mr Zebrakat and I. Honestly from the bottom of my heart, thank you so much for everything. Especially all the people who sent cards, flowers, plants, mags, chocs & sweets, biscuits and messages.

The year started with a trip to County Cork, Ireland to celebrate Aunt P, 80th birthday with family. It was was such a heartwarming celebration. Aunt P knows how to provide a party, we had it all, fabulous food, good company and magnificent entertainment. She’s a very courageous lady, she had literally just finished treatment for breast cancer and we were hopping on a plane. Thank you Aunt P for a wonderful time.

To my relatives in Ireland it was wonderful catching up with you all. We will be back when it’s safe to fly again.

Covid 19 played havoc with special birthdays, weddings and new baby’s this year. I’m sure these celebrations were as special as they could be.

Hamish & Lottie

Hamish has been part of the family now for 2 years. Lottie & Hamish are very much in a routine with toilet breaks, feeding and sleeping. Your more than likely to find Lottie at my side and Hamish sleeping on my bed blanket. I’m sure my neighbours must laugh at Lottie and Hamish when they are running into the house together from the garden. It’s quiet comical watching them following each other like sheep. They are known to kiss and lick each other first thing in the morning.

Hamish still looks like a lion and is slightly larger in stature to Lottie. Lottie can hold her own too, if Hamish tries to grab her. Pets are obviously very therapeutic.

Home

Copyright 2019 Zebrakat

We are still tweaking our current residence. It’s certainly changing in appearance and no longer represents a typical terraced house floor plan. We started in the roof space and now we are on the ground floor, working from the front of the property to the rear. I’m waiting for a replacement front door, which has been delayed due to covid 19. It’s been on the order since October.

I wanted to show you a cupboard that I’d designed earlier in the year and finally put into its place. I needed the unit to fit on a plinth in my guest bedroom. It’s made out of scaffolding boards. Anyone who knows me will appreciate I love a little timber in my decor.

The cupboard consists of doors, drawers and shelves. Behind the doors is some hanging space and some additional shelving. Its perfect for guests and now considered a new heirloom.

Health

I’ve already discussed my health in previous blogs. I’m glad treatment is over for now, I’m hoping my body gives me a little respite from medical appointments and health issues. I’m planning to continue as I do, live life and be happy.

Travel

Travel this year has been a bit of a washout, however I’ve still managed a few places. I was able to fly to Ireland earlier in the year, which was amazing. I’ve also visited Bath & York, both historical cities. Bath & York are full of beautiful architecture, fabulous restaurants and quaint shops. I would recommend both cities a visit, magnificent gems of the U.K.

Mr Zebrakat

Mr Zebrakat is working from home and on site as he works in the construction industry. It is nice having him around. On a positive note, covid had Mr Z at home when I was going through treatment. He unquestionably is happy he’s working and is one of the lucky ones still working.

Mr Z is undoubtedly been my tower of strength going through treatment and family hospitalisations etc. Thank you Mr Z for always being there as always as usual, what would I do without you.

Hobbies

Reading, I did about 66 books last year, so beat my previous years record. Watch out for my next blog for my annual list of books.

Covid has allowed me to frame up & hang some travel pictures etc. I’v also been filling up photo albums with old photos. I still have numerous to do but I’m getting there. I’ll then move on to filling up scrapbooks with memories and mementos.

Hopefully 2021 will no longer be a year of doom and gloom. We all need to be vaccinated and getting on with our lives. Love to you all 🤣

Blog No 165 – PRRT & Covid 19

What a year, with covid-19, I don’t think anyone is ever going to forget 2020 in a hurry. Did you achieve something positive through lockdown? I did, I hung up some pictures, sorted out my photo albums and filled them with lovely memories. If we hadn’t gone into lockdown those empty photo albums would still be there, looking empty.

I consider myself one of the lucky ones this year, as my cancer treatment continued in London throughout lockdown etc. The hospital had experienced numerous cases of covid-19 patients and precautions were put into place for the safety of staff and patients. I was required to have a covid-19 test locally prior to travelling to London. A negative result was vital in order for treatment to continue. I would like to thank all those individuals who were involved with my treatment at the Royal Free Hospital, London. Thank you so much.

My mother had a tough year after being diagnosed with a secondary cancer. Her cancer treatment continued locally throughout lockdown/covid 19 with a few hospital stays. We both had finished our treatments within 2 days of each other. She is doing much better now but she’s not still 100% as yet. She’s a tough cookie. X

PRRT treatment – everyone has a different experience but we all have similar symptoms. The treatment procedure is not that bad, the only symptom you may experience during treatment, is nausea. The medical team will give you anti nausea meds prior to treatment. They can also control the flow of treatment so you don’t experience nausea. The more treatments I had, the worse post treatment symptoms got for me. What’s funny is, I can’t face pasta since the last treatment. The thought of pasta in any form still makes me gag. I’m not sure I will ever tolerate spaghetti bolognese again.

I’m so relieved that we have finished treatment for now. We are 9 weeks post treatment and my bloods are still not to normal levels. They won’t exactly be perfect due to the cancer, nevertheless they still need some improvement. My Oncologist is keeping an eye on them for me, I’m in good hands. My hair has thinned a lot since treatment but it will grow back I’m sure. During my treatment my hearing was affected and it’s certainly not a known side effect. Yet it can’t be dismissed either. I’m also experiencing dizziness but we don’t know, if there’s a connection to the hearing or if it something else that is going on. I’m starting to get terrible migraines again so I’m monitoring that for the Neurologist. That’s the problem with an illness, it can lead to other problems.

My daily quality of life, I would consider has definitely improved. At the end of the day there is no cure for my cancer, therefore I wanted a quality life whilst I was living, that’s not too much to ask

The latest results following results following my recent CT & MRI scans was that I am stable. Stable means no new growth of cancer in other areas. This is a little questionable for me, because I only found out that I have tumours on my lungs whilst going through treatment. In my eyes that new growth but in their eyes it’s tumours over a certain dimension. I’ve obtained all of my records as I don’t like being kept in the dark. This latest scan gave me the dimensions of the new tumours in the lungs so I can monitor the growth. Even though I’m consider as stable surely the lungs is a new site of cancer, I have cancer in the peritoneal, pelvic area and liver and a couple of other questionable areas. My Oncologist is going to send me for cancer (Ga68) scan in April. This may give me a true reflection of what is really going on, although my scans don’t always reveal everything. I personally don’t think it will be long before I have another op on my bowel. You heard here first lol.

My ultimate goal with treatment was to improve my daily quality of life and I do feel we achieved this. I’m so grateful for my new found freedom in lockdown lol. Thank you to my friends & family who have always supported me through my treatment.

Just one more thing, I was giving support to another patient going through the same treatment. I will call her SC, she was a wonderful lady and I had found another loyal friend experiencing this same cancer. I have a few more cancer friends and ladies, you know who you all are. X SC was suffering from a lot of pain and I personally don’t feel she was getting the support she needed. Clearly there was more going on, therefore I was devastated to learn from her husband that she had passed away. I do believe that I’m still here because I do my diligence and I’m very persistent. I would say to any patient of any illness, go with your gut, and fight for you health. Rest in peace SC you will certainly be missed by me. X

Blog No 160 – Bath, Somerset

Last February, we went to Bath, Somerset for a weekend away prior to my cancer treatment. I’m truly embarrassed to say that I’ve never been to Bath. Although it has always been on my wish list of places to visit in the U.K.

I’m going to show you some photos in colour but the remaining photos in B & W as the weather was diabolical. The U.K. was experiencing Storm Ciara, so everywhere was very grey, windy and wet. Sorry about the rain droplets on the next photo but the weather was horrendous.

Royal Crescent

Bath is one of the UNESCO World Heritage Sites in the world. The Royal Crescent is one of the most desirable addresses in Bath. One of the greatest pieces of Georgian architecture in the U.K. 30 houses built between 1767 -1775. Designed by Architect, John Wood. The Royal Crescent is 538ft long and each building is approximately 50ft high.

The Royal Crescent has been a filming location for the following tv & film appearances. I have listed a few

  • Bridgerton (2020) Netflix
  • The Many Lovers of Miss Jane Austen (2011)
  • The Duchess (2008)
  • Persuasion (2007)
  • Joseph Andrews (1977)
  • The Girl with a Pistol (1968)
  • The Wrong Box (1966)
  • Having a Wild Weekend (1965)
  • The Count of Monte Cristo (1964)
  • The Fighting Pimpernel (1950)

It is believed to be the very first crescent built anywhere in the world. I’ve seen one in Leamington Spa, Warwickshire, which is also a spa town. The properties are believed to be regency style.

The Circus just around the corner from the Royal Crescent was also designed by Architect, John Wood. The Georgian Houses form a circle overlooking a green space and were built in 1754 – 1768.

We then went to 25 Gay Street, Bath, now known as The Jane Austen Centre. Jane born 1775 – 1817 was a UK Novelist, she was known more for the 6 novels as below:-

Sense and Sensibility – 1811 Pride and Prejudice – 1813 Mansfield Park – 1814 Emma – 1815 Northanger Abbey – 1818 Persuasion – 1818

Jane only lived at 25 Gay Street, Bath with her mother and sisters following her fathers death

Some of the exhibits at the The Jane Austen Centre.

The Ivy Restaurant is a popular and famous venue in London for celebrities and the media industry in London. The restaurant provides you with excellent food and 5 star service. Furthermore, we hadn’t ever been to The Ivy Collection Restaurants before, however Cambridge is on the radar for our next visit.

Pulinery Bridge

Bath Abbey

Bath Roman Baths

Put Bath are on your list of places to visit in the UK.

Blog No 159 – Final PRRT Treatment #4 in London, U.K

Near Holland Park, London

Travelled down to London ready for my PRRT Treatment No 4. Here are some of the views from the Embankment, just before Waterloo Bridge.

What a view from the Embankment just before 6pm. There is so may tall buildings in around the city of London now, it’s beginning to look like downtown city in USA & Canada.

We took a trip to Portobello Market, Notting Hill. The market wasn’t on nevertheless there was a selection of vintage & antique shops that were open. Notting Hill is such a hippy chic place with different colour residential and commercial properties. Cute little coffee shops and lots of art & jewellery stalls too.

Signage for Portobello Market

I understand that the movie ”Notting Hill” was made this side of town with Julia Roberts and Hugh Grant. I’ve not only never seen the movie but I also appeared to have missed the photo opportunities. I walked by the travel book shop twice and missed the blue door photo to Williams flat. Oh dear, I do have some nice photos of Portobello Road. It’s a beautiful area.

What can you see on the Building.

Some of the other glorious buildings.

Let’s see how this PRRT treatment goes. The last treatment, I had was gave me a bit of a rough time with bone & tumour pain etc. I’m very hopeful this treatment will be easier and I’m to expect a Ga68 scan in approximately 6 weeks. Let the results be good. X

Blog No 153 – PRRT During Covid -19

Hello Everyone

Sorry, it’s been some time since I last blogged. Life took over, covid -19 took over and PRRT symptoms took over. I don’t think anyone is going to forget 2020 in a hurry. I can’t wait to see what the history books say.

Let me start, by telling you I’ve had PRRT #3 last month and I will be having #4 is in October. My PRRT goal was to improve my daily symptoms and if it slowed down my progression that would be a bonus. I have been typical patient in respect of symptoms, hair thinning, pain, flushing and fatigue. It’s also true that your symptoms do indeed get worse as treatment goes up.

I was initially an in patient over 3 days but due covid -19 the hospital started to do the treatment as a day case. Personally, my preference is getting the treatment in a day but I don’t like the travelling home situation. On a good day it can take up 90 mins, nevertheless if traffic is bad it can take longer.

Once the treatment takes hold, I did endure tumour pain. As the tumours get inflamed, you know the treatment is on track. It can aggravate your carcinoid symptoms too, which intensifies your flushing or bowels. Lucky me, I was exposed to both. The next treatment had been delayed due to me sustaining bone pain. Therefore, we are allowing 12 weeks instead of 8 weeks I was doing, between treatments.

Covid -19, has been challenging for everyone and more so for many people. I personally think people has become complacent, ignoring the rules etc. I don’t understand people’s ignorance but I guess that will always happen through any situation. I would like to say thank you to all workers, key workers and the medical profession for working through a particularly hard situation.

During treatment and covid -19, my mother was diagnosed with a secondary cancer. She’s being tough, however she has suffered additional side effects and her chemo has been cancelled on a couple of occasions . She is fighting through the obstacles like a trooper. Mother & daughter going through treatment at the same time, just blows my mind. It certainly would make a great book.

I’m going to embark on my blogs again so please watch this space. Love to you all.



Blog No 152 – Peptide Receptor Radionuclide Therapy

I started this blog prior to commencing my first Peptide Receptor Radionuclide Therapy (PRRT) treatment.

Since my diagnosis I’ve changed in so many ways. I have learned from my disappointments and grasp the opportunities when they arise. The opportunities, allow me to be normal and not as patient like I do everyday.

I personally can see now that I look sick and I can’t say that I’m a lover of it but I’m accepting of the situation. In spite of that I’m normal with no visible illness. There’s no dramatic weight loss or evidence of me wearing a headscarf to cover hair loss.

Last weekend, we travelled to Bath to distract us both from the upcoming treatment. We were both grasping the opportunity of normality in a beautiful part of the UK. It rained buckets but we had a wonderful time before heading to London

The PRRT treatment will hopefully allow me to be more managed and not a case of the cancer managing me.

The proposed short term side effects are

  • Nausea
  • Vomiting
  • Abdominal Pain
  • Fatigue
  • Mild Hair Loss

The leas common side effects

  • Bone, Liver and Kidney Toxicity

I am experiencing some short term symptoms and it’s not easy. Who in their right mind says yes to radiation via an IV. The answer is any person who wants to extend their life and that’s me. My life is not over and I have more goals to achieve.

Weekly Blog No 127 – My Life Continues

Once upon a time, there was a girl called Kat who dreamed of travelling the world but she was stuck down with a disease called cancer. How her life changed……

No one can prepare you for life with cancer, it’s an ongoing assault course. I don’t want pity but everyday its a challenge. It’s wasted energy, which I would have preferred to use in my career. Cancer was not my chosen career, however it is a full time job of manoeuvring through symptoms, medication, side effects, appointments and procedures.

My last blog, I did mention there may be more tests between appointments. Subsequently there was, I even had some scans last Sunday, ready for my Oncologist next week. Hopefully he will have a treatment plan, which may involve a clinical trial with PRRT. As soon as I’ve been to the appointment, I will update you within a couple of days.

I’ve also been to see my Neurologist, who would still like to stick a needle in my head. I’ve chosen the less invasive action of increasing my medication for migraines. Sometimes the medication is not so effective that the only solution is a drink of Coke or Pepsi. Don’t ask me why it works but it does.

Let’s move on to more happier events in life. Mr Zebrakat has been awarded a Fellow in the construction industry. There was an award ceremony in London and I couldn’t be more prouder of him. He deserves the acknowledgement for his contribution to the construction industry

Whilst in London, we went to the London Docklands Museum. I will do a separate blog for that visit.

Although going out is a challenge, Mr Zebrakat & I have adapted to my needs. Only now, did I had realise what precautions we actually take to make travel more accessible for me. It’s become the norm for us but there is a degree of planning & organisation. You learn to adapt very quickly and I’m sure it’s the same for any illness.

The story continues……….

Weekly Blog No 58 – Life

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It’s been a while, so here’s what has been going on.

You can never predict life and sometimes you’re faced with situations that you don’t expect. I think we are never ready for the unexpected in life, however we always manage to jump into adrenaline mode and get on with it.

Family Emergency Update 

My family member was in hospital for a month, I’m glad to report she’s doing ok now. She has a little journey of her own to travel but she will get through it.  Thank you so much to all our family and friends for your continuous support. 💚

My Update 

I’ve struggled for sometime with one thing or another and my issue is I never seem to get conclusive answers. I feel like I’m in constant
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