Tag Archives: survival

A day spent in bed

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Tuesday 19th November

One week ago today I had a left groin dissection to remove all the lymph nodes and surrounding tissue as a preventative measure to stop the spread of melanoma.

So, today has been a ‘duvet’ day; warm and snuggly under the covers, whilst the wind and rain beat against the windows. I feel much more comfortable in a reclining position anyway ~ well that’s my excuse, and I’m sticking to it!

I have been thinking, and reading a lot about the trial I have been offered. I have so many questions/outcomes/what-ifs/then-what’s going through my head at the moment, as far as it is concerned.

I thought at first, when the Macmillan nurse told me about it, ‘Yes, I’ll do it’.

Then I started to read about the side effects, travelling for hospital visits, scans, and the fact that I might not even be taking the drugs, so I was like ‘No chance’.

Having read the comments from other people who are also on the trial (via the Facebook group), I now feel I may be swinging back to ‘Maybe I should give it a go’.

I really was rather worried about all the side effects, but it would make sense, that those listed apply to Stage 4 patients, as they haven’t tested ‘fitter’ Stage 3 ones yet!

I am beginning to feel more positive about putting myself forward for the trial now, even if you just get the increased monitoring, without the drugs, that must be a bonus.

I think I need to speak with my family doctor, Macmillan nurses and an oncologist as soon as I am able. But the more I think about it and read the information, I am tending towards saying ‘yes’ to the trial.

The Macmillan nurse did say not to make a decision straightaway, as I am still recovering from surgery, am perhaps a little emotional, wait until I have the results from the groin dissection, and talk to as many informed people as possible. She said ultimately the decision must be mine, I must be selfish, and to think purely about myself, my life and family, to do what is best for me.

Still doesn’t make it any easier!!

So, I go to sleep tonight knowing that I have support from so many people, and they will help me in the decision I must make.

Counselling session #2

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Monday 28th October

Well, here we are again, one week on, is there anything else to talk about?

Actually, yes. Having been given the date for my upcoming surgery, I am both relieved and yet apprehensive. Scared stiff more like. Two weeks today we shall be staying overnight in an hotel, ready to go to the hospital at 7:30am the next morning.

Two weeks of waiting, and then the operation. My head is filled with all sorts of “What ifs?” Hard to explain, but the dark thoughts are there, nonetheless.

So, what am I doing about this state of mind? Trying to stay positive as much as possible; getting lots of fresh air; eating fruit and vegetables; working through some breathing and meditation exercises; taking cinnamon, turmeric, resveratrol and lycopene supplements;  cooking with organic, virgin coconut oil; and a teaspoon of Manuka honey every morning.

I’m hoping all these little things add up to a lot; enough to make a significant difference. I don’t want to be classed as having mild to moderate depression and anxiety. I have to do something about it. I’m not going to get on that downward spiral. I want to live my life.

Stage 3a ~ B-raf positive

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Tuesday 15th October

Today I learn from the Macmillan nurse that my biopsy has returned from the Royal Marsden, showing my gene mutation to be B-raf positive. This means I will be eligible for a drug trial on Vemurafenib. Not necessary right now, but the information is there, ready to be acted upon quickly.

I also find out my cancer is now Stage 3a. Meaning??  Well, firstly, the melanoma cells have now spread to the lymph nodes in my groin ~ at the top of my left leg. Secondly, the survival statistics now become reduced ~ a 57% – 73% of surviving the next five years, and to be here in ten years time, 50% – 67% chance.

Not the best of news, but I have enormous faith and confidence with the healthcare professionals looking after me, and the advances being made with drug therapy to treat melanoma is truly outstanding.

Positive all the way.

Follow up appointment

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Friday 14th June

It is now exactly four weeks since I traveled to Plymouth for the second operation on my foot. Painkillers, dressings, infections, antibiotics, appointments, a scan, compression stockings, crutches, silly foam and Velcro shoe/boot have all been a part of my daily life!

Today I went to see my awesome plastic surgeon consultant at Treliske (he was running over an hour late!), but he still took a considerable amount of time talking to me.

He is really pleased with the way the skin graft is taking on the top of my foot. We discussed all the procedures he had undertaken, and being an 8mm tumour, that means I have Stage 2B melanoma, with a five year survival rate of 70% (good odds, or not?)

For now, I must focus on being as healthy and sunsafe as I can. The recouperation process from two lots of major surgery is still ongoing, taking in physical, mental and emotional recovery.

He is referring me on to his friend/colleague at Exeter for Sentinel lymph node biopsy. (“He’s a good bloke!”) and we talked about what might happen. I’ve a feeling the letter may come through pretty soon, as he dictated the request there and then. He really wants to push me to the front of the queue, bypassing time consuming paper-work.

Also during the consultation he spoke of my talking with an oncologist, but was wary of too many specialists each having their own take on the situation, and advising one course of action without communication with the rest of the team! He told me quite vehemently that I am his patient, and he makes the decisions! (I believe he was making reference to the original Macmillan nurse who gave me conflicting, confusing and wrong information: he seems very possessive about his patients.)

We also talked about our proposed summer holiday, and whether it was likely that we could actually go, bearing in mind his request for SLNB for me. He said if the appointment came through for late July/August then I would be a fool not to accept it. I can always book another holiday, but my health and enjoyment of my life comes first.

I left the hospital feeling quite upbeat; lots of information to take in and process, but I know I am being given the best possible care, and that I am truly being so well looked after.

Post-op #2 ~ Day Three ~ Some questions

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Monday 20th May

Been awake since half past three this morning. Thinking, pondering, wondering.

Trying to compose some questions for my next visit to the consultant:

Do I actually “have” cancer?

How do you know if I’ve “got” cancer?

Can it be “seen” via CT or MRI scans?

If the removed melanoma/tumour was 6mm, what stage would that indicate?

What is my survival rate? (37% – 50% for five years? Is this true?)

What happens next?

Should I go on holiday in the summer?

Will my travel insurance have to increase?

What else can I do to change my lifestyle for the better?

New drugs or clinical trials? Ipilimumab?  Vemurafenib?

What about cannabis oil?

Loads of orange and green fruit and veggies?