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 168 – UK Mother’s Day

Today is Mother’s Day in the UK, therefore Happy Mother’s Day to all mothers out there. I’m unfortunately not a mother but I’m a Godmother and Aunt so I’m as good as a mother on another level. I got a beautiful card from my Goddaughter H for Mothers Day. Thank you H 💕

Considering I was living in Canada for years, I’m still tuned in to Mother’s Day being in May, I guess its hard to switch off. This year all mothers are in lockdown so I hope all children have been very creative. I’m sure more thought has to go into gifts and trying to make their day as special due to covid restrictions.

I’ve already spoke to my mother today and she is lavished with cards & gifts. She said she was going to have a relaxing day and have some chocolate.

To all those children who have lost their mother’s, I’m sure it’s a very hard day for you. Nevertheless, I’m confident that all your mothers are smiling as they’ve never been forgotten by their loved ones.

Can I include pets as my children, I’m sure there is a lot of people who do. My pets Lottie (dog) & Hamish (cat) have selfishly absorbed all the love today with cuddles and belly rubs.

I hope all new & old mothers have a wonderful day. 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 164 – Churchill War Rooms, London

I made the trip to London for more scans back in Dec 19. Whilst we were there, we took a visit to Churchill’s War Rooms in Westminster, just around the corner from the Houses of Parliament. London is oozing so much history and the architecture is incredible.

There is a fee into this museum but it’s certainly worth a visit. The museum is open from 9 – 6pm daily. Check opening times before you travel just in case there’s lockdown restrictions.

Chiefs of Staff Meeting Room

The heads of army, airforce and navy would meet in this room to discuss the war efforts.

Winston Churchill

This was Winston Churchill radio address from the Cabinet War Rooms to the people of France on the 21st October 1940.

Switchboard Operator

Every call taken by a Switchboard Operator was deemed as urgent at the Cabinet War Rooms.

Ismay’s Quarters

Room 61 was Hastings Ismay’s. He was the Chief of Staff to Churchill. He was the link between Churchill and the heads of the three armed forces. A senior officer would have the luxury of carpet in their room.

Access Point

The Camp Commandant was responsible for the day to day maintenance of the Cabinet War Rooms. The key rack with all its keys and labels.

The Map Room

The beating heart of the Cabinet War Rooms. The room was used for gathering intelligence to fight the war. During a shift there would be 5 officers. A duty officer, 3 officers from the armed forces and official from the Ministry of Home Security.

Map Room Supplies

A box of map pins sorted by colour ready to use.

Mrs Churchill’s Room

A little more of a luxury room with a dressing table and comfy armchair.

I would recommend a visit to the museum especially if your at the Houses of Parliament.

Blog No 161 – Museum of London Docklands

This visit was a couple of years ago before a medical appointment. We went to the Museum of London Docklands.

The museum occupies three of the five bays of No 1 Warehouse, West India Quay. A Grade 1 Listed Building, built with stock brick with Portland stone architectural features. The northern elevations of the warehouse are in a cheaper plum brick. Five storeys and attic with a semi basement below quay level. Triple span hipped slate roof.

Here’s some of the Museum exhibits. I’ve provided photo’s and a little info.

No 1 Warehouse

Carts would of be used to move cheese, casks, boxes and bales of tobacco.

Trade Expansion 1600 1800

The stone fragment dated 1619 craved with the coat of arms of the East India Company.

London, Sugar and Slavery

Anti-apprenticeship banner dated 1813 produced by campaigners opposing to the imposition of compulsory apprenticeship on those liberated from slavery.

City and River

Painted wherry seat back dated 1824 middle right hand side. This is awarded to the winner of the 6th Queenhithe Waterman’s race and includes a painted view of Southwarks Bridge.

Sailortown

A pub in one of the streets and alley in the vicinity of the docks and river Thames.

Warehouse of the World

Wine labelling bench dated 1900 – 1939 on the right hand side. The Port of London Authority offered merchants a range of services including wine and sport bottling and labelling.

Docklands at War

Casing of an unexploded German bomb that fell on Millwall dated 1939 – 1945. In 1941 the basement of Bullivant Wharf, Millwall, was in use as an air raid shelter.

Sainsbury’s Study Centre

Sainsbury is one of the nation’s oldest food retailer’s. Sainsbury’s started in London in 1869 thats over a 150 yrs old. That’s enormous achievement and succeed through recessions and pandemics.

The museum offers free admission, however you can make a donation. I would thoroughly recommend this museum, it’s truly amazing.

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.

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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.

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Magnificent Residential Properties

What can you see on the Building.

Some of the other glorious buildings.

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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 151 – Being Vegan

I became vegan at the end of October to see if my daily symptoms would improve. Im happy to report, there is definitely some improvement. Mr Zebrakat became vegan at the same time and had noticed, he’s never hungry now, his sleep has improved and he feels fitter whilst playing football/soccer.

As I said previously, I actually became vegan to improve my daily symptoms. Years ago, I was informed that I have an egg white & cows milk intolerance. Therefore I had always drank my coffee & tea black. If I was to have milk in cereal etc, I would have rice or soya milk. Subsequently, I wasn’t good at avoiding milk or eggs in products. I didn’t always read the labels to dodge the products that I was sensitive too.

Being vegan eliminates animal based foods, like milk, eggs, meat, fish and honey to name a few. I’m used to buying alternative milk products although I had never tried alternative cheese or cream. Essentially vegan makes it easier for me disregard those products, whereas being vegetarian I would still be eating products with ingredients including cows milk, cheese or eggs.

I have been reading social media, books and magazines to gain more knowledge about veganism. I’ve certainly learned some incredible facts, however I’m not going to quote them just in case they are totally incorrect.

Tell me …….Why does everyone have an opinion about someone being vegan. It does make me laugh the questions I’ve been asked by non vegans and vegans. Your either nuts or not vegan enough. I believe being vegan is making a small contribution to animals and the environment. Any contribution is surely better than no contribution at all.

Did you know there is accidentally vegan products too. These are products that are created without intentionally being vegan. (Free of animal products)

Here is a few products that are accidentally vegan.

• Walkers Prawn Cocktail Crisps
• Jelly Tots
• Fox’s Party Rings
• Ritz Crackers
• Peanut Butter
• Chinese Chow Mein Pot Noddle
• Bistro Gravy Granules (Original)

Hopefully I will continue to feel the benefits of being vegan. Roll on PRRT treatment (cancer treatment) this month.

Blog No 149 – Cancer Update

Just before Christmas I went to London for more scans etc. Although my symptoms had been a mixed bag since stopping treatment, I was carrying on regardless. Subsequently I also tried to improve my daily quality of life. I went vegan at the end of October and Mr Zebrakat came along for the ride with no expectations. Believe me or not, we are both enjoying the change of diet. We are both benefiting from the change in one way or another, yet nothing can stop the pain but medication (Morphine). Fatigue and nausea etc can knock you for six too but that’s cancer for you.

On the 27th Dec, my Oncologist called me at home to inform me that my latest scans revealed more growth. Well that’s a surprise NOT. 😂 My Oncologist intends to commence PRRT in mid Feb. I’ve been chasing this treatment for over a year and now it’s finally happening.

How do I feel, well it validates my symptoms and concerns with my body. The specialised treatment has had some amazing results with Net patients. Remember this treatment is not a cure but can possibly extend your quality of life. This is my final trump card, hopefully it’s the best hand I have.

Addendum

I had a colonoscopy yesterday only for the Doctor to take 8 biopsies. I could see that I had additional growth in the colon. It was only 2 yrs since my last operation on the bowel.

Blog No 147 – Cancer Update

Cancer Update.

So I’ve been a bit quiet for a while, here’s why. I was having a hell of a time dealing with symptoms from my cancer treatment (butt dart). Back in end of April we decided to stop the cancer treatment to see if my symptoms would improve. Overall they have to be honest giving me a better daily quality of life. Nevertheless it’s not perfect, as my pain is now emphasised more. On top of that I’m dealing with spine pain and nerve pain. I have good and bad days. Not withstanding the above, there is more bad than good days. Thank god Mr Zebrakat, married me in sickness and health. 😅

Last Monday, I seen my Oncologist who informed me that although I’m stable. I have cancer in my stomach & pelvic areas, liver and peritoneal. Also my spine is lighting up on the scanner but my Spine Consultant already suggested he felt this was the case prior to any cancer scan.

The way forward is continue to stay off the cancer treatment. It was a decision that I tortured myself over before the appointments. A case of what ifs. More blood and urine tests and rescan end Feb beginning of March. In the meantime, I have my other Consultant appointments to attend. Since writing this update, I’ve received a sneaky scan to be done next month.

Life goes on, I’m not on social media as much, I’m trying to do bits around the house, still reading, resting more because of symptoms and I need to get back to my blog. X

Love to you all. ❤️