I have not been keeping up on my weekly blog due to ongoing issues. My symptoms are relentless sometimes and can be from morning and continue throughout the night.
2 weeks today, I had a colonoscopy and I am waiting for the biopsy results. The bowel prep wasn’t wonderful but eating lighter meals for a few days before the procedure certainly helped. In Canada, you don’t remember the procedure that you had, which I thought was amazing. In the UK, even though the right drugs are given, you’re very much awake and you can feel some discomfort. I would love to be time machined back to Canada for this procedure. How can 2 country’s be so different. The GI Consultant knew I had a bad experience before in UK and he saw it, as a challenge to wipe away my bad experience. He was amazing and very compassionate.
The following morning I was seen by a Net Consultant not my usual Net Consultant and I will say he was greatly missed. Let’s just say fish & chips can work in harmony, where this one was more of a case of salad & chips, not so harmonious.
After digesting my salad & chips appointment, I did telephone the department and ask for a fish & chips in future. I don’t need to be considering side orders if it has no beneficial impact to my health or immediate care. You may think a side order of beetroot is good for me but it’s not advantaguous to me
I did walk away armed with medication and more investigations to be undertaken. I will start scans again next weekend, let’s hope there is a positive outcome
In the meantime, the Net Specialist Nurse arranged for a Macmillan Nurse to see me for symptom control. She was a breath of fresh air. More like caviar & chips lol. She has made further changes to my meds, including ones I already commenced last week.
She is arranging for a Specialist to see me at home to explore some more of my symptoms. The Macmillan Nurse is going to check in with me again early this week. I did thank the Net Specialist Nurse because local support is required when symptoms are ongoing.
My Family Physician has also referred me to be seen by a Gynaecologist on the request of the Net Team. I had a hysterectomy early 30’s but retained my ovaries. I’m having some pain in the pelvic area, we know I have disease in the pelvic area so we going to investigate carcinoid ovary or it could just be a case of cysts on the ovary’s. Let’s see what happens.
Overall there are lots going on, I definitely feel like I’m declining, however I look ok. Appearance is not everything. My medication represents a very sick person but it’s not out on show. Therefore there is no telltale signs. I like to think I just get on with it but having the Macmillan Nurse acknowledge your illness certainly makes you more aware that you really are ill and that is why these people are here. I will stress these visits are only for symptom support not end of life support.
Here’s a link to the Macmillan Nurse and the service they offer. They are the most compassionate caring people. My Macmillan nurse even hugged me goodbye on out first meeting. She wanted to keep Lottie too but that wasn’t going to happen. Lol
zebrakat 
Happy to hear you’re getting help from Macmillan, they’re a great bunch. I hope you get some positive news soon.
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Thank you. Wonderful Nurse she is. 😀
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Thank you so much Ronny. I seen to be falling behind on other people’s blogs at the minute, I will catch up at some point. 😀
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❤️ I so hope they can get you some substantial symptom relief soon Kat, I know that’s one of the most difficult parts. In the meantime, thank you for taking the time to share with us how you are feeling and giving us an update despite your current condition. I know how much it can take out of you having to relive everything through writing, so accept our gratitude for your willingness to share ☺️
XOX, always here
Miranda
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Kat–love the analogy of fish & chips! You made me laugh on that. Not on all the rest though. I hope you can get some relief soon and that they can figure it out for you. Thank you for taking the time to keep us posted on your health and what all else is going on in your life! Also, here in the U.S. they put you out for colonoscopies! Can’t imagine not being “out” for one of those. I’m about due for mine and not looking forward to it at all. Prep is the worse part.
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Thanks Sharon. Im glad you got my analogy lol. I don’t envy your bowel prep or colonscopy. I wish you good luck with all your test. Let me know how it goes. 😀
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Thanks for keeping us posted, Kat! I hope you find the solution to keeping your symptoms under control soon. So far, monthly injections of Sandostatin have been doing that for me. The nurse who comes to the house to give them is definitely caviar and chips!
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Thank you for reading. 😀 I was on Sandostatin until May 2015 and then changed to Lanreotide, I’m sure I would 10 times without it. 😀 I’m glad you have a caviar & chips nurse. It makes all the difference.
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This might help you .Very Best Wishes. Andy
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The below story is my ten years in full. This should hopefully explain the highs and lows during this time. This has been used by my local MP who has taken it forward to the health department to hopefully obtain a substantive response as to why the drug has been removed from the NICE list?
My story started approximately ten years ago, whereby I was diagnosed with a Neuroendocrine Tumour to the pancreas.
I was at my Doctors surgery and I noticed that they were providing well man checks for the over 40s Male. I decided to take these basic checks. After a couple of weeks the initial blood test that I had given came back with abnormalities.
After further checks I was sent to the local hospital for an ultrasound check. Not long after having this check within minutes I was given a CT scan that resulted in a large mass being located on my ride hand side of my upper body that was the size of a football. I had felt no pain.
It was diagnosed as a Neuroendocrine Tumour to my pancreas that must had been secreted there for years and years.
The surgeons moved quickly and remarkably it was supposedly all removed and I was given the all clear. I lost my spleen and tail end of my pancreas during surgery as well as the large tumour.
This remained the same for approximately seven years when I returned to the Doctors for an unrelated matter, Due to my mental state at that time the Doctor recommended me for another CT scan that picked up that tumours had returned to my Liver and pancreas that were in operable.
I was subsequently allocated a Specialist Professor. He took care of me for the next four years providing routine treatments in order to control the tumours. This worked for about five years whereby I was able to live a normal life with hospital visits whilst still living with my cancer.
Following this period I was allocated another Specialist Professor who continued the treatments He also used other treatments in order to control the tumours. Also during this time I was provided with a Nuclear scan that was supposed to light up the areas affected by the tumours. A number of limited areas showed up on the scan. I was provided with Everolimus, but due to my low immune system I contracted Encephalitis and nearly died as a result . I was seriously ill and at this time I had to retire from my job as a Detective Sergeant serving 26 years within the police.
During this time my family were very worried and struggled to cope and became increasingly worried and aware that my treatments were becoming limited and that my
options were running out as my calcium had also started to rise as the tumours sought more calcium from my body and my levels started to increase alarmingly.
This continued for approximately two years whereby I was in and out of hospital on a regular basis. Whilst in hospital I was provided with fluids and other medications that did
not succeed at lowering my calcium levels that continued to rise. The Doctors became worried because nothing would lower my calcium levels,
It was also starting to take its control over Myself.
I began to lose my speech and ability to hold a conversation. I also could hardly walk a few feet as my legs were becoming increasingly weak, I was more or less bed bound at this time. It also made me increasingly susceptible to loud noises and I became withdrawn in Myself.
It was also very hard for my family who had to increasingly get used to my regular mood swings. It was also impossible for me to button my shirt or my trousers due to my deteriorating health. During this time I also suffered heavy falls in hospital and at home leaving me Badly bruised and sore. The Specialist staff continued to give me treatments that did not work and allowed my calcium to become at dangerous levels threatening my bone marrow and other parts of the body.
By this time my normal treatment options for reducing calcium were ending and showed no signs of any improvement and I continued my very poor health remaining weak and withdrawn. About six months to nine months ago, I was being considered for palliative care at home such was my state of health.
The route of all my problems was my calcium levels being so high and were affecting my basic bodily functions.
At this point Professor X recommended me to Sheffield to speak with Doctor Y who was performing a relatively new treatment that involved nuclear medicine that was non evasive and injected into my arms. It was clear to the Professor that one of the tumours appeared to stand out and was requesting the extra calcium to enter the blood stream. An earlier nuclear scan was provided to Dr Y along with my medical records. The scan showed up limited areas where I had been effected.
Despite my very poor health I was accepted for the treatment by Dr Y for the Peptide receptor radiotherapy Lutetium -177
In October 2016, and had my first treatment staying overnight at the hospital before leaving the next day.
Nothing really happened for the next week apart from me being tired but I suffered no real side effects.
Within a week and without any warning I started to feel subtle changes and the benefits of the treatment.
It was life changing because all of a sudden I was able to join in conversations and my co ordination became back allowing me to eventually walk five miles. Walking my Golden Retriever dog. The change was unbelievable and people started to comment on how well and coordinated I had become. My memory is becoming sharper as I am able to recognize names and faces again. I also more tolerant with family and friends. I can now dress Myself and walk and run in a straight line. It’s incredible how this has become true after only one treatment. My family and Myself have recognized a massive change in my overall health and the fact that they are able to perform less tasks on my behalf. I am now also able to get up early in the morning and occupy Myself rather than staying
in bed to lunchtime or late afternoon. The health benefits have been terrific and unbelievable. I feel like person reborn and given another chance in life. Before I always used to think how long I have got and when am I going to die ? Now these thoughts have gone and I intend to live my life to the full with the help of Dr Y whom took that chance with me and that has handsomely paid off with added bonuses to my health. Only recently, I am able to compile this report to you as it was impossible previously.
I am now so enthusiastic about life and enjoying it with my family. Life is now a joy ass I communicate on face book with my many friends and tell my story to give help to others with the message never to give up. I am sure that this treatment will provide others with the unbelievable health benefits that I have achieved through the treatment.”
Yours Sincerely
Andy Norris
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Andy some story. The fact you were so ill, you also had to depend on others in order to function on a daily basis and that you lost your identity as a DS. I’m happy to see that PRRT worked for you and that you are regaining your life back again. That’s a success story. 😀
My biggest loss through this illness is my job that I loved and thoroughly enjoyed. My symptoms are a constant struggle but hopefully the Net Team will put me forward for PRRT sooner than later. I have a life but not a quality of life. Im sure you felt the same previous to your treatment.
I hope life continues to improve for you and I’m sure your family are enjoying results. Keep me updated 😀x
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I’m really sorry to read that you were ‘awake’ and aware of the procedure. I’m in Scotland in the UK and never remember anything of the procedures I get. And yes great news on the nurse front too. I’ve got nurses that come in and look in on me every few days. They do my dressings, administer my lanreotide and are in general ‘just there’ for me and the family. Couldn’t do without them. Take care Kat love Elizabeth xx
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