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

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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 111 – Post Op Update

I have just been discharged from hospital after being in for 17 days. Ive had major surgery, right hemi-colectomy, omentectomy and bilateral salpingo oophrectomy due to the pesky dandelions (tumours) again. I’m not cancer free, it’s not a cure, It was purely for quality of life.

On a good note, I’m no longer in the pain that i was experiencing prior to the op, however there is somewhat post op pain and uncomfortableness. There was a few tumours taken out, nevertheless the biggest tumour being 3lb in weight(size of a grapefruit), explaining all the excruciating pre op pain due to its size. I can’t say it’s been easy this time around, after this particular op, I had 2 days in ICU then onto the high dependency ward for 6 days followed by a general ward. I was plagued with pain, vomiting and other symptoms. I will pretty much hesitate to ever go for op no 11. I believe I just coped with all the previous ops so well so I thought I would just bounce back again. In some respects I have in a funny kind of way.

I’ve since had the pathology report as suspected it was tumour involvement in the right ovary, stomach membrane and bowels. I knew something was wrong for a while and have questioned the medical data that was put before me. I will continue to push when I need too. I know a cat has 9 lives but I’m pretty dam sure I’ve exhausted nearly all of mine.

I have a big birthday in a couple months and I will endeavour to celebrate in one way or another. When diagnosed nearly 5 years ago, I had secretly put out to the universe, please let me reach this special birthday and it seems my wish has been granted. Thank you universe.

I need now to rest my weary eyes and turn off the hospital alarm clock, of observations and medication etc. I will be having dIstrict nursing in daily to attend to my wound. Furthermore follow up appoints soon and oncology scans in about 3 months.

I know I’ve said this before, and you’re most probably bored of me expressing it again but I won’t ever apologise for my gratitude for my lovely husband. He has been an absolute diamond and there is no words for his ever ending qualities. Without him I’m sure that I couldn’t handle what is put before me with such strength and determination. Thank you J and I love you dearly.

I would like to personally thank people(mainly family) in the know for my cards, flowers, goodie bags, messages and for feeding my lovely husband. Your kindness and generosity will not be forgotten by us both. ❤️

Weekly Blog 74 – Medication

On Monday, I was given some additional  medication to help with my cancer symptoms. Since my diagnosis I have been an avid collector of chemicals it seems. I am collecting medication like I have found a brand new hobby. It’s not exactly coin collecting or postcards. Its pills, powders and injections. I have small pills, large pills, blue pills, white pills, two-tone pills, capsules, tablets and powders, the list is endless. I have a storage of  injections in my refrigerator, which clearly shows I have no storage for wine.

I counted the other day that I take a minimum of 17 pills a day plus I have a further 4 meds to be taken at my discretion. If I did take the supplementary medication, I would be taking nearly 30 pills a day . That’s just ridiculous, I would be taking approximately 210 pills a week and 10,920 a year. Thank you NHS for supporting my pill collection.

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Note to Cancer

Now cancer you have a lot of explaining to do, as a result of you I have a hobby I don’t want or even enjoy. The definition for hobby ‘ an activity done regularly in one’s leisure time for pleasure’. There you go, it’s certainly not leisure and those butt darts are far from pleasure. Isn’t it enough that you endure me with the disease notwithstanding chemical overload too. Yes you do provide me with different colours, sizes and shapes of medication, however I’m no longer interested in what they look like. Unless they taste of mint, toffee or are coated with trifle sprinklers for added interest. I would like to request a break from your ongoing torment inflicted on my poor body. Please consider my request.

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The bottom line is, medication is used to make people feel better, reduce fever, pain and combat disease. No one enjoys taking medication and I certainly don’t or equally its side effects. I do have a choice but I chose to take the medication in order to extend my life and to not inflict any further symptoms. I don’t enjoy exposing my body to all these chemicals, nevertheless I can’t boycott them either. Therefore I will have become accustomed to rainbow coloured medication and its supposedly benefits. 

 Are you taking medication? How many a day? 

 

 

 

 

Weekly Blog No 43 – The Differences Between UK & Canada

In this week’s challenge, I thought I would try to explain some of the differences between UK & Canada services, since my return to the UK. Please note this is only my opinion formed from personal experience to date.

Health System 

Just when you think it’s straightforward, you start to get frustrated with protocol.  I’m due my next cancer injection next week yet I’m no nearer to getting the treatment I need.  I know when I’m in the system, I will be ok and I will have access to all relevant parties. I don’t understand why I’m the person who’s doing all the chasing between various parties to do their job. My symptoms are terrible and I need their help to improve my quality of life. NHS you will be the death of me yet.

A further update since writing the above paragraph this morning.

I was in touch with a fellow UK patient this morning and she gave me some great advice. With her guidance,  I reacted and contacted a local Net Nurse via email. I honestly thought I wouldn’t hear from her until tomorrow morning, yet she responded today. She’s arranging my injection for this week and getting me in to see a Net Consultant ASAP.  Thank you L.

Library

Very helpful in the UK, like Canada., absolutely no complaints but just praise for the service.

Banks

I’m going to send the UK bank management team to Canada for work experience.  UK banking you believe you are super efficient and provide an excellent customer service, let me tell you, that you are rubbish at execution. We had to speak to 5 different people to open an extra bank account at our branch.

Canada you get the thumbs up. One person and bingo it’s done. Our branch contact in Canada was both super efficient and customer focused, we miss you KNC.

Post Office/Post Man 

My experience to date has been on par with Canada, however UK you get thumbs up for pricing and delivery.  It is wonderful getting my mail through the door before 10.30am in the morning.

Cinema 

Pretty much the same experience although the food variety is so much better in Canada.

Supermarkets

British supermarkets are amazing and the choice is incredible. I think Canada learns you to make quicker decisions because you have less choice options. I swear I stood for 15 mins trying to make a decision on coffee.

Watch Repair Man

One service we struggle to find in Canada yet in 10 mins I had two watches replaced with batteries for £8 ($16).

Phamarcy 

I had built a wonderful relationship with my pharmacy in Canada and had found them to be excellent to deal with. In the UK, I will have to make the same relationship, however my first visit to an UK pharmacy was interesting to say the least. A woman was verbally abusing the pharmacist and then she continued to abuse a customer waiting for her meds. I turned to my husband and said “welcome back to the UK”.

I’m really happy to be back, nevertheless clearly there is pros and cons to every country.