Weekly Blog No 37 – Medical Week of Madness

 

The challenge this week was to continue smiling with my head held up high.

A  month ago I got a second opinion from experts in New Orléans, USA. A city steeped in history but a little scary at times, however renowned for carcinoid patients. I had a consultation with Dr Woltering and Dr Wang who are very well-known in the NET/Carcinoid Cancer Community for their expertise on my specific cancer. On arrival both Dr’s clarified my fears of what I had suspected for months and had previously questioned with Oncologist. Their recommendations where to have more surgery on the liver to remove tumours, review the bowel as its questionable and remove the ovaries for precaution. The outcome would be that my quality of life would improve and prolong my life. Now that’s a result.

My husband and I got some relief and renewed hope because my life is a constant struggle. Upon my return to Canada, I had an immediate appointment with my Oncologist, who was clearly eager to know the outcome of my recent appointment, it wasn’t how are you doing, it was more of a case what did New Orléans say. Upon telling my Oncologist he dismissed the extra tumours on the liver. He clearly got hung up on my ovaries, which to me was the least important feedback given. However he did accept the recommended medication proposals and he also acknowledged that my recent labs suggested more tumours. Now there’s a contradiction straightway you don’t have tumours but you do have tumours.

I have to be honest and say in the last 12 months, I have felt very frustrated with my Oncologist. I find that his actions are reactive rather than preventative. What I mean is, such as last May, I was rushed to hospital due to pain, which was dismissed by him and I ended in hospital. Having yet another emergency operation on my appendix and where neuroendocrine tumours were found. I have many examples but I think my post says it all.

Following my appointment with my Oncologist, he had arranged for a follow-up appointment with my NET Surgeon. She is an excellent NET Surgeon but her bed side manner has a lot to be desired. We have all dealt with doctors like that and we continue to allow it too happen, maybe because if you complain we all think it may affect our future health care. I did kinda of suspect how the appointment would have concurred as I had felt my Oncologist was singing off the same hymn sheet.  She is more senior and appears to be head of the Net Team so there is regular round table discussions. As predicted the appointment went terrible, there was 5 of us in the room , my husband and I, the surgeon and two resident doctors. To cut the story short she walked out the room leaving us all open mouthed wondering what just happened. Our appointment was meant to be 1pm but due a patient emergency we were waiting for over 2hrs and my personal nurse said I can rearrange your appointment to save you waiting as she was going into an operating room.  We agreed an appointment two weeks later given me to time recover from my future spine surgery, however on the way home we got a call asking could we please come back as she wanted to see us.  My cynical mind says she is clearly eager to know what her fellow professionals have recommended. We didn’t get back to the hospital until 4.45pm due to traffic, yet she was happy to leave us waiting for a further 30 – 45 mins before coming into the room. The appointment was horrendous and she came across both very patrorising and unprofessional. It was clear she had dismissed their opinions and I don’t know if it was just a case of professional rivalry or ego. 

I must say I do have the up most respect for her surgical abilities and everyone you talk too feels the same. I met another one of her patients in hospital this week, I didn’t mention my recent incident as I do believe in professional integrity, however the patient clearly said she was an amazing surgeon but her bedside manner has a lot to be desired. I don’t know if her manners have ever been questioned by the local health authority etc or is it just accepted/ignored because she’s an amazing surgeon, I think the latter.
I started to question things again, Why oh why, do we take what they say as literal, why do we never challenge them and why are they the only profession that we put on a pedestal. Any other professions we will challenge and seek alternative advice.  I have an amazing Family Physician who continues to deliver for me. My Spine Surgeon is amazing too and even said to me on Friday “let me worry about you and your spine issues not you” Lol. There are doctors and nurses who are very compassionate and treat you with respect. I like to be treated like I would treat you and that’s always with care and compassion. As an Engineer/Building Surveyor every client of mine was treated with the same level of service, my goal was for them to walk away with the results they required and to be satisfied. I believe that I did meet that as I had never received any complaints even whilst doing enforcement action of an unpleasant nature.

On Thursday I had my 4th lumbar spine surgery, I’m at home now resting and hopefully I will be pain free and have no more limping. My Spine Surgeon is going to check some other areas of concern through MRI’s and I will do my due diligence and keep a track on that too.

I will continue to fight for my life, what do I have to lose really.  We can’t prevent someone from getting cancer but we can put in place both reactive and preventive measures. I am here today with Stage 4 Cancer because doctors were diagnosing my symptoms to generic problems.  I have to take on some responsibility for not challenging them more over the years and allowing myself to be fogged off. I have an obligation now to fight for me, my family & my friends and I can’t/won’t allow doctors to continue to dismiss my concerns without justification. I have both visual/written evidence and I will use this to hold someone liable if I need to get the care that I require. I shouldn’t have to be fighting for my life and my care.

All I want is what I’m entitled too 🆗

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Weekly Blog No 29 – I’ve Reached Another Birthday. Whoop Whoop 😄

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When you have cancer you wonder if you will ever reach another birthday. This time last year I was about to have my liver resection and gall bladder operation. I didn’t know what to expect and it was about 6 months since my previous operation so I was sick of being a patient. Furthermore I was a little apprehensive as I didn’t know what to expect. I had 2 very experienced surgeons operating on me a neuroendocrine surgeon and liver surgeon. My birthday is on the 27th and last year it was nil by mouth in preparation for the operation, this year I do intend eating and drinking on my birthday.

I’m truly grateful that I’m here to celebrate another birthday so thank you to my care team. Do I feel better maybe not but I do have a life, yes I do. I know I don’t have a quality of life but it’s a life opposed to the other option. I really do try to ignore my disease and live life to the fullest without limitations.

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A younger healthy me  

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The beginning of my cancer journey  

This birthday will be celebrated with friends as my family are in Europe. The celebrations include spa treatments, movie, a meal and coffee & birthday cake. I couldn’t wish for anymore to be honest. Thank you to my family & friends for helping me through this year and let’s reach another one together. 😄

Weekly Blog No 10 – Overcoming Reality.

True Quote

True Quote

This weeks challenge is overcoming reality of the situation and remaining focus.

A week today, I went to see my Oncologist to discuss the way forward. This was going to be a difficult meeting with my Dr due to my recent op and its findings. When I had my liver resection in January, I certainly didn’t expect to be back in hospital in May for an appendix op. I just wasn’t ready for further a operation, nevertheless I was truly sick of being a patient. 4 operations in 14 months, now I’m not looking for sympathy but the reality is when you have cancer you have to be prepared to accept the unexpected as you don’t have control over the situation.

This appointment was to discuss the facts of the current situation, the Oncologist informed me that my cancer had spread and net tumours were located in the mesoappendix. He informed me that the disease was progressing quiet rapidly, which I then asked “how long do I have”. He told me that I have years rather than months but it would be a good idea to start actioning my bucket list immediately as my health is deteriorating and I might be too sick to do activities in the not to distant future.

This was shocking news and no one ever wants to think they are dying especially so young. My immediate thoughts were, how do I tell the family and will I ever work again. My family are both in the UK & Ireland so not really on my doorstep and I do miss work terribly. It’s the 1st time, in 16 months I said “why me” and “how did this happen”. During this week I was experiencing the angry phase too ” why did doctors not detect my symptoms sooner” and ” why was I only diagnosed at Stage 4″ the final stage. I have since calmed down, nevertheless those feelings may come back again with many tears.

The bucket list, I gave it some thought previously and have considered things in the last week including taking ownership of some goldfish. My husband bought me the goldfish this week, which I will discuss further in next weeks challenge. I have came to the conclusion that a bucket list is so final and could be too much pressure. Why put pressure on myself when trying to deal with an illness just makes no sense to me. I will wing it, I will attempt to do things when I can and just make the most of life. This would not be everyone’s decision but Ive been very fortunate in life to have travelled and reach my own personal goals. I will continue to be the proactive person I am as long as my health allows me too. Live life to the fullest is my motto.

Weekly Blog No 5 – Medical Cabinet

 

 

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After been rushed into hospital for another op, it seems that I have accumulated another 3 meds to my stockpile from when I was discharged. I thought it would be a good idea to check my medical cabinet and its contents when I got home. The realization is that the medical cabinet is not deemed a priority or even a daily task in most households but should definitely be reviewed annually.

I do consider myself to be organized because all my meds are stored in one place and not peppered all over the house in various drawers/cabinets. I was shocked to discover that I had unused medications, I needed to throw away expired items, and I had to replenish items from the medical cabinet basic list.

I have supplied a medical cabinet basic list so that everyone can check his or her cabinets or drawers. I would check with the Pharmacist to see if anything should be added or deleted from the list.

Medical Cabinet Basic List

Pain, Headaches, and Fevers
Aspirin
Acetaminophen (such as Tylenol)
Ibuprofen (such as Advil and Motrin)
Thermometer

Congestion, Colds, and Coughs
Cough medicine
Decongestant (such as Sudafed or Dristan)
Throat lozenges

Allergies and Itching
Antihistamine (such as Benadryl)
Hydrocortisone cream (for persistent itching)
Calamine lotion
Eye drops

Digestive Issues
Antacids (in tablet or liquid form)
Anti diarrhea treatment
Laxatives

Cuts and Burns
Gauze, bandages, and medical tape
Antiseptic for wound cleaning (such as hydrogen peroxide)
Antibiotic ointment for preventing infections from wounds
Aloe vera gel

Good luck with your medical cabinet.

Weekly Blog No 4 – Monthly Planner.

 

Monthly Planner

Monthly Planner

 

As a cancer patient or even someone with chronic illness your life can be full of medical appointments, whether it is blood tests, seeing your family doctor, undergoing investigative tests or meeting your specialist for a treatment plan/results.

As I am old fashioned at heart, you can’t beat a hardcopy monthly planner. I use a monthly planner, which shows over 2 pages so that I can track all my appointments. I also highlight them in pretty pink to make them more prominent from my other entries, like birthdays, alternative appointments and bill payments etc. My monthly planner can look like a sea of pinkness at times.

Last week I was hoping to have a week free of medical appointments in an attempt to do things with my husband on his weeks vacation. We were going to the garden centre to look at shrubs & trees, have tradesman finish final bits of work, review basement plans for changes, start rear yard fencing and even if possible do some fun things as well.

As a cancer patient you can suffer pain or side effects. No day is the same, nevertheless your life is not what it was in so many ways. Like any other illness you have to learn to adapt. On Sunday 18th May, I was experiencing some pain, which led me to hold my right side and at times i would also feel some nausea. The pain was progressively getting worst over the next few days leading me to do less activities. I was constantly seen smooching the couch so it was time to make a pink entry in my dairy to see my family doctor appointment for the following day.

When the doctor seen me and then touched me he sent me straight to ER (A&E in the UK). I was told it was a suspected appendicitis and I would go for a CT scan. After the scan, it was confirmed that I had a perforated appendix I was to be operated either that very day or the following day “Saturday” because I was a complex case. I was actually operated on the Saturday through an open wound and left with a jp drain from my stomach. I’ve had some ops in my time and this one has been the hardest yet. Appendix ops are usually a 3 day stay but I was kept in for 5 days. Sent home with various meds etc. I’m still waiting on the pathology report to see if it is Carcinoid Cancer affecting another organ. Fingers crossed.

My weekly challenge was to have a week free of medical appointments but I was just unlucky I guess. Pink will continue to flow in my diary.